tag:blogger.com,1999:blog-37857274080434316702024-02-07T10:07:17.954+00:00FibroloveaffairAnonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-3785727408043431670.post-2464662818980182522016-10-18T21:15:00.000+01:002016-10-18T21:28:51.527+01:00We travel not to escape life, but for life not to escape us<div class="western" style="margin-bottom: 0cm;">
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<span style="color: purple;">This</span><span style="color: purple; font-family: "georgia" , "times new roman" , serif;"> blog post is a little different from the ones I usually write but, I wanted to talk about something positive which is unfortunately quite difficult when talking about chronic illness. Sometimes all you need is some fresh air, a change of scenery and some good laughs to make you feel better, even if only for a week :)</span><br />
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">On Saturday 24<sup>th</sup>
September, I went away for a much needed holiday to the Isle of Wight
with my family and boyfriend. I have loved family caravan holidays
since I was little and was excited about exploring a new place away
from London. What makes the Island different from London is that you
can take everything at your own pace which comes hand in hand with
the relaxed and homely vibe that it has to offer. I never felt like I
was falling behind others. Living in the hustle and bustle of London
can often make me feel like I am missing out as I can't always enjoy
the lifestyle that it has to offer. I just don't have the energy for
it.</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Saturday 24th - Our adventure awaits</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">We set off for
Portsmouth early Saturday morning as our ferry was leaving at 1. As
we got stuck in traffic due to an accident, we missed our ferry by a
few minutes. Luckily, we were able to get on the next ferry leaving
at 2. Nodes point, which was the caravan park we were staying in, was
only a short drive away from the port so we finally arrived at about 4. We
spent the evening in the clubhouse having dinner and then went to
pick my boyfriend up as he had travelled at a later time.
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Sunday 25<sup>th</sup> – Sandown Shanklin </span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">On our first full day,
we had planned to go to a car boot sale near by but, as the weather
was not on our side that morning, it had been cancelled. Instead we
decided to explore Sandown which was a little town sheltered in a
beautiful bay on the Southern coast. It is famed for its long stretch
of beach and its traditional British seafront and Pier. We went for a
stroll along the beach before heading to Shanklin to play some crazy
golf. We ended the day in a charming 16<sup>th</sup> century hotel
called The Bugle Inn, situated back in Sandown to have some dinner. From the moment we stepped in it was like
stepping back in time.</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Mondays 26<sup>th</sup>
– The needle Chairlift x</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">We went to visit the
iconic, world famous chairlift that takes you to see the needle rocks
and coloured sands. The views were stunning as it was a display of
nature at its best.
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Tuesday 27<sup>th</sup> – Godshill Village</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Godshill was a
delightful, picturesque English village filled with traditional tea
rooms and a wide range of shops offering local produce and crafts
that lined the winding main street.</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">We sat in one of the little tea rooms that led on from a beautiful garden to have some tea and cake.
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Wednesday 28<sup>th</sup> – Monkey Haven x</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">What a gem this place
was. We got to learn so much about the animals that had been saved so
you really got a sense of their story. The talks were so enjoyable to
listen to and the keepers seemed to have such a great relationship
with all of the animals. I finally got the opportunity to hold a
snake which is something I have always wanted to do and it was worth
the wait.
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">My Dads old work friend
moved over to the Isle of Wight a few years ago and we felt that this
would be the perfect opportunity to meet with him and his wife to go
for lunch and catch up. Since I met Pat, I have always seen him as a
Grandad. He is such a warm and caring character who makes you feel at
ease. We met at the Fleming inn which was only a short drive from
where we were staying. It was a lovely little pub with a cosy family
feel to it which was perfect for the occasion.
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgicwF9YyF9sUmi8SSXgaQj9xneUyw1farDoPLZyi4j5tJzs8gJMrGIb68y9YlRuE-JUCt20H5UOY8jNqjng3JqQrK6jILrpno98oWFFtCzIVkLH3S7Wq6w7Nwsbc5LfxmMAfxwuFZDwY4/s1600/Horse+riding.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgicwF9YyF9sUmi8SSXgaQj9xneUyw1farDoPLZyi4j5tJzs8gJMrGIb68y9YlRuE-JUCt20H5UOY8jNqjng3JqQrK6jILrpno98oWFFtCzIVkLH3S7Wq6w7Nwsbc5LfxmMAfxwuFZDwY4/s320/Horse+riding.jpg" width="320" /></span></a><span style="color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Friday 30<sup>th</sup>
– Horse Riding x</span></div>
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</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">On Friday morning my
mum, boyfriend and I got the opportunity to go horse riding along the
beach. The experience was wonderful. The weather brightened up as we
set off and the views were beautiful. Although this did wipe me out
for the remainder of the day, it was worth it. On our last night we
went for dinner at the Crab and Lobster Inn as my mum had wanted sea
food all week. It was a pleasant way to end our holiday.
</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Saturday 1<sup>st</sup>
October - Heading Home</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;"> The heavens had well and truly opened on the day that we
were leaving. As out ferry was not leaving until 4, we took this
opportunity to go and visit the Shanklin Olde village which was full
of little gift shops and tea rooms. We travelled up the side of the
cliff in a lift that would take us up to the old town. After out
little jaunt around the village, we headed to the port to catch our
ferry back.</span></div>
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</span><br />
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Going away for a week I
feel has done me the world of good and what better way to spend it
than with some of my favourite people. After the stress that has
accompanied me through out the majority of the year, a holiday could
not have come at a better time. I wanted to make sure that I made the
most out of my time away which meant that I probably pushed myself a
little too far but, I have been able to rest since coming home and overall feel like I have accomplished something. </span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-60781058635267885002016-09-02T21:39:00.000+01:002016-09-04T23:14:39.062+01:00Fibromyalgia, Its like having a hangover only without the party <div class="MsoNormal">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZm-m0NSrXMBeZFslM87P5D5brACzBHoV5M28BqANDl-LuWvf-BcEJP55yWmnri5gd9zWl1RRjoMGScYWO_AEheznYzLFR17yFcs83K9L8mvXAest2-odHjbFNWBbSBjE-W2v29zz4Kag/s1600/IMG_20160902_211810.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZm-m0NSrXMBeZFslM87P5D5brACzBHoV5M28BqANDl-LuWvf-BcEJP55yWmnri5gd9zWl1RRjoMGScYWO_AEheznYzLFR17yFcs83K9L8mvXAest2-odHjbFNWBbSBjE-W2v29zz4Kag/s640/IMG_20160902_211810.jpg" width="640" /></a></div>
<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">Over the last months I have found it difficult to sit and
think of something to write. I have found myself on countless occasions sitting
and staring blankly at the laptop, having forgot the idea that had popped into
my head only moments earlier. During the month of August I have found it hard to distinguish whether I am having a good day or bad day and my memory has dwindled from day to day.<o:p></o:p></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">On the 24<sup>th</sup> August my little brother turned 18.
For ages I had been looking forward to celebrating my brother’s birthday as he
was never old enough to come out with me when I was spending various nights
after work drinking until the early hours, not worrying about how I would feel
the next day. Unfortunately, now that things have changed, as much as I was
looking forward to going out on a Saturday night, I was also dreading it. The
weeks prior I had to try and save up as much energy as I could to at least
allow me to stay out for a few hours. I had to come off my medication for the
day so that I could at least have a few drinks without being riddled with
unwanted side effects. Coming off one of my tablets for as little as a day can
cause severe withdrawal, much like a drug addict going cold turkey but, I was
determined not to spend the evening drinking soft drinks surrounded by people
enjoying the effects of alcohol. We started off in Camden which was as far as I
had planned to go but, my brother had a VIP booth booked in a club in central London
and I didn’t want to give up just yet.<o:p></o:p></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;"> I was surprised at
how well I handled the evening as I managed to dance, sing, drink and feel like
a relatively normal 22 year old woman for the first time in ages.</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;"> However, the
next morning I paid the price for having a great night as I spent the following
day feeling exhausted, in pain and a far cry from what someone in their 20s
should feel. If I was to listen to my body and not push myself to much then I would
do even less than I am currently doing which, to be honest is not a lot. I am
turning 23 in a week’s time and I don’t know whether I have much to celebrate. I
hope that this time next year I will be in a better position, that by some miracle
I will be cured and my life can go back to normal but, honestly I am not very
optimistic. <o:p></o:p></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Birthdays when you are chronically Ill tend to highlight the
fact that you are still ill. This time last year I had just quit my job and was
enjoying a break that I was hoping would allow me to bounce back. Instead a
year on I am not in the best place physically or mentally and it is difficult
not to feel upset about it. However, I will save my spoons for my birthday
weekend and will enjoy celebrating with my loved ones :)</span><o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-76272848095976928962016-08-07T17:37:00.001+01:002016-09-05T22:13:44.686+01:00As mad as the hatter, as lost as Alice ⏳<div dir="ltr">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxv7EPg2Rwqc0JItLp04V_sT0oBIKaR0f_YlRVfhxvlVuxudbwz5rOFIxDR6In4DzS-mENIiqFlMndD2tO-ZW-ooDU-u4gft7zMXuD6wQIym2s6_GfKomU8gndGFTSTX4A9NOaxa5XJfY/s1600/20160521_235400.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxv7EPg2Rwqc0JItLp04V_sT0oBIKaR0f_YlRVfhxvlVuxudbwz5rOFIxDR6In4DzS-mENIiqFlMndD2tO-ZW-ooDU-u4gft7zMXuD6wQIym2s6_GfKomU8gndGFTSTX4A9NOaxa5XJfY/s320/20160521_235400.jpg" width="240" /></a></div>
<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">I have spent a lot of time recently feeling a bit lost... lost in my head... lost in my body... lost in life. Lost yet the clock is always ticking. There is so much going on around me that is just out of reach.</span><br />
<a name='more'></a><span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;"> My motivation dwindles from day to day and I use all of my strength to get through each day as it comes. No plans or goals, just living. My mind often races through my thoughts <u>too</u> quick for me to process, leaving me confused about how I feel. The months have passed so quickly yet I feel like I have been standing still, watching life go by. </span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">Although there are moments where I feel useless and defeated I refuse to give up. I try my best to keep smiling. It is so difficult to be positive when the pain runs through me and the fatigue leaves me unable to do anything. Both come hand in hand and it often feels like they are winning the battle that I never chose to fight. I have to dig deep in order to find the old me, now hiding from all of the chaos. The person that I used to be has been replaced by someone who has realised the true meaning of strength.</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">You often have to mourn the person you used to be before allowing yourself to grow and own who you are now. I know what it feels like to feel lost. To feel like no one understands, believing that you alone will have to fight but, when times get tough there will always people there to lend a helping hand. You are not alone even when you feel like you are the only one.</span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">Fibromyalgia amongst other conditions can leave you feeling isolated but, allows true relationships to blossom while the others get lost along the way. You are left with a strong group of few rather than a large weak group of many but, that is ok. Accept and express the painful feelings that you have. You've lost a part of you and that can't be ignored. It may feel like you have no control over your life which is something I have felt many times but, you have control over how you handle the situation. </span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">You are not defined by your illness, you have a story to tell, a history, a personality. <br />
Staying yourself is all part of the battle.<br />
Feeling lost and unsure is part of your path. </span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-62203615302758539652016-07-21T15:55:00.001+01:002016-09-06T13:08:43.734+01:00 Summer heat? What is this torture?<span style="color: purple;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNtJRvokSw4-RKmAlTj9ka41z0gK4fXL9l_7z_VOLsPzNESnCrjUIOWxhT7WItNhyphenhyphen1YnubQXa-cA9nxcUe_vvNpRY7n6mexAbjucS-so2qF3b8dFb0Iet3jpplUJUZUW8A6eR3kaHBoJ8/s1600/20160723_142816+%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNtJRvokSw4-RKmAlTj9ka41z0gK4fXL9l_7z_VOLsPzNESnCrjUIOWxhT7WItNhyphenhyphen1YnubQXa-cA9nxcUe_vvNpRY7n6mexAbjucS-so2qF3b8dFb0Iet3jpplUJUZUW8A6eR3kaHBoJ8/s640/20160723_142816+%25281%2529.jpg" width="360" /></a></div>
<span style="color: purple; font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span>
<span style="color: purple;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">In the UK we are currently in the middle of a surprisingly hot summer. I know i just said UK and hot in the same sentence. Usually by this time of the year we barely reach short wearing weather and we always need a umbrella handy for when the heavens open which we have all grown to expect.</span></span><br />
<span style="color: purple; font-family: Georgia, Times New Roman, serif; font-size: large;"></span><br />
<a name='more'></a><span style="color: purple; font-family: Georgia, Times New Roman, serif; font-size: large;">Unfortunately, i have found that suffering with Fibromyalgia can cause heat sensitivity and on the hottest day of the year so far I am suffering. It wasn't until a few days ago that i really learnt the meaning of a "flare-up" the hard way. After 3 weeks of clearly doing too much for my body to handle I have well and truly hit a wall and whilst my energy levels have hit a low point my pain levels have rocketed. For the last 3 days from the moment I get out of bed I am faced with pain all over my body that does not subside until I fall asleep and I have not had a seemly good nights rest in I don't know how long. I am embarrassed at how pathetic i look trying to get up the stairs, using what little strength I have to pull myself up. My walking stick has now become my best friend and is by my side more often than not.</span><br />
<span style="color: purple;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: white;"><br /></span>
</span><span style="color: white;"><span style="font-family: Georgia, Times New Roman, serif; font-size: large;">I would love to tell you t</span>hat I am enjoying the unexpected heat and that I am loving Summer this year but, I truthfully can not wait for it to end.</span></span><br />
<span style="color: purple;"><span style="color: white;"><br /></span>
<span style="color: white;">Rant over! I just can't sugar coat this shit :)</span></span><br />
<span style="color: white;"><br /></span>
<span style="color: white;">Thank you for having a read. Would love to know if any of you can relate.</span>Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-85691592000095492042016-07-02T12:38:00.000+01:002016-09-04T20:32:46.323+01:00"I lost myself somewhere in the darkness"<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;">“Life is funny, isn’t it? Just when you think you’ve got it
all figured out, just when you finally begin to plan something, get excited
about it and feel like you know what direction you’re heading in, the paths
change, the signs change, the wind blows the other way, North is suddenly south,
and east is west and you’re … Lost.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;">I miss the age when I believed that I would have my shit
together by the time I was the age I am now. I can’t say that I ever had major
future plans when I was in school because that would be far from the truth.
When I was trudging through my teenage years my only concerns would be passing
exams that now seemingly mean nothing and surviving double English without
having a breakdown (all you English A-level people know the struggle). School never really prepares you for real
life. The moment you walk out of school
for the final time and enjoy that one last summer holiday, reality hits and
shit gets real. I was one of the very few that didn’t follow the majority of my
year to university. Almost every morning in form our teacher would be banging
on about UCAS forms and university choices and as it was a waste of my time I often
chose to stay in bed a bit longer and go in just in time for my first lesson.
There was never really anything I was interested in enough to spend the next 3+
years learning about. I had always wanted to get straight into work and earn my
own money. I was never bothered about getting a degree and to this day still
feel the same. However, it has been almost 4 years since I left school and
although I do have 3 years of employment under my belt, I can’t help but feel
that I am back to square one. I have been unemployed for almost a year now and
it is driving me crazy. Recently I was
contacted about a senior supervisor job in a new designer outlet but, due to my
current situation, I couldn’t even bring myself to call them back. <o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><br /></span>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;">I’m going to be honest, I have found my emotions running
high the last few weeks. One minute I can feel fine and then I feel agitated,
upset and frustrated which hits me off guard. I find myself worrying about the
future. But then I stop and remind
myself that it will all take time to get used to. Re- building your life can be
hard but, it will not happen overnight. My Mum said to me a few weeks ago “If you want
to be sad, be sad. We will ride it out with you. We will be here for you when
you need picking back up as well as when you don’t. Sometimes you just need to cry and then pick
yourself up”. These were the words I needed to hear. I have a busy week ahead and I am just hoping
my body can handle it. Wish me luck x</span><o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-4462377193740182422016-06-24T18:50:00.001+01:002016-09-05T22:10:52.360+01:00I Believe You!<div class="MsoNormal">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
<tr><td style="text-align: center;"><span style="color: purple;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSGpEPca4WDJnX0kH0PKabvSVEQENCctbGGLQmT-bFLCYwS4p82kdA0pEMNrifFnmIBP77rSso4T4yAg4xzw0cHH6sdQV7i1IS8KSfbaFsTwb3XVkvy36WuwxTamEW7KxGjTVs7K1lJaE/s640/20160617_212942.jpg" style="margin-left: auto; margin-right: auto;" width="640" /></span><br />
<span style="color: purple;"><br /></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div class="MsoNormal">
<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: small;">(My Mum & I on our way back from one of my Fibro
Meetings last week. My legs had given up by this point and my brain had
switched off but, still smiling.)</span><o:p></o:p></div>
</td></tr>
</tbody></table>
<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">The worst thing you can do to someone with an invisible
illness is make them feel like they need to prove how sick they are. Nobody really
realises that some people have to use a tremendous amount of energy merely
to be normal. I am what a person with an invisible illness looks like. </span><br />
<a name='more'></a><span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">I
do not look visibly ill, in fact I probably look like any other person of my
age. Unfortunately, one of the worst things about having an invisible
illness is that many people do not understand as they cant see
anything visibly wrong therefore, leading to them sadly not believing. You
don't have to see to believe! Just because a illness is invisible does in no
way mean it does not exist. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;"></span><br /></span>
<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">
To be honest my illness isn't really invisible as if you look closely
enough, you can see how it has changed my life on both a small and large scale.
For example getting on a bus or train and realising there are no seats and the sinking
feeling you get knowing that you are going to have to stand for the duration of
your journey. A few times I have been left in the same situation even when I am
using my walking stick. Clearly I look too young to need a seat with or
without a walking aid which is ridiculous! <o:p></o:p></span></div>
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Most of the time we look "normal" and "healthy". Some
days are better than others but, does not mean that on the relatively
"good" days we are free of pain. I do things at pain levels others
wouldn't even consider moving at because if I don't, I wont have a life. This
does not mean I am having a good day, I just managed to power through
and managed to be stronger than it for part of a day. There is no
miracle cure, there is no quick fix and certainly in my case not a break
from the pain.<o:p></o:p></span></div>
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<span style="color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">You can hide a lot with a bit of make up and a smile on your
face. Sadly, this is how a lot of us prepare ourselves for the day
ahead as it is much easier than having to explain what is wrong. Many of us do
not make a fuss and we fight through the day despite the pain/fatigue and array
of other symptoms that either come with the illness or come hand in hand with
the numerous types of medication we are on. It only tends to be our nearest and
dearest that see the full extent of what we have as they see us first thing in
the morning when the pain can be at its worst and will see how the smile fades
and we crash as soon as we get home.<o:p></o:p></span></div>
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At the Fibromyalgia group I am surrounded mainly by people older than me, both
with new and old diagnosis'. Many of them cant image what it is like for
someone so young to deal with the condition. You haven't been able to see
the world yet, you often cant drink because of the medication and the pain
and fatigue pretty much wrecks any sort of social life you may have
once had. Being young and sick is a bit like being elderly, expect you lack the
ability to be able to reflect on all of the great times and experiences that
you once acknowledged. Instead we bitterly observe our peers make the
memories and strides that they will fondly look back on in the
future, wishing and hoping that we could have our chance once more to do
the same. <o:p></o:p></span></div>
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It isn't all doom and gloom though. When you battle a condition like mine, you
realise who the real people in your life are. Those who make the effort
to understand what you are going through and stick by you even when you have
cancelled for the forth time in a month, are the people worth being surrounded
by. You have enough to deal with so having a close circle of people, whether it
big or small, gives you less to worry about and lets you know who you can call
even on a bad day. <o:p></o:p></span></div>
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Just remember that people will always have their own thought and opinions on
the subject (which they are entitled to) but, it is in no way your problem
if they feel the need to be judgemental. Value the input you get from those who
love, support and most of all, believe you!</span><o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-11078045487333118332016-06-13T19:17:00.000+01:002016-09-05T22:09:33.748+01:00Life is tough my darling but so are you!<div align="LEFT" class="western" style="margin-bottom: 0cm;">
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Almost a year ago now I was working 40+ hours a week </span><span style="color: purple; line-height: 93%;">running here there and everywhere to get things done and </span><span style="color: purple; line-height: 93%;">spent my days off resting for the busy days ahead. Now my </span><span style="color: purple; line-height: 93%;">life consists of numerous doctors appointments, waiting for </span></span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">referrals, filling in benefit forms and remembering to take </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">tablets.</span><br />
<a name='more'></a><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;"> I must admit it has been difficult to adjust to as I </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">have spent the last 3 years constantly on the go with a </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">schedule to tell me where I need to be and what I need to do. </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">Time at home used to be a very rare gift and I would count </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">the days until I had a day off. Now however, I spend most if </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">not all of my week sat at home procrastinating. It is very </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">difficult to be productive when you are always in pain as the </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">line between being productive and over doing it is very thin. I </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">find that on days that I have a burst of energy and feel </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">motivated often leave me paying for it for the next few days.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Living with a chronic illness of any kind can be pretty </span><span style="color: purple; line-height: 93%;">challenging. It can be difficult to accomplish the tasks that </span><span style="color: purple; line-height: 93%;">you need do however, actually doing these tasks takes a toll </span></span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">on you mentally and emotionally and you often start </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">questioning your ability and worth. On many occasions I </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">have begun to question whether I will ever be able to go out </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">for a few hours without being left exhausted and in pain for </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">the days that follow. Battling with my condition has also had </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">a large impact on my social life. I am unable to plan in </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">advance as I may not feel up to venturing out when the day </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">arrives. I find myself often choosing to stay at home rather </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">than going out and meeting friends as I know what the </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">outcome will be and usually do not feel it is worth the </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">aftermath. I find it difficult to determine how much is too </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">much as on some days getting out of bed and having a shower </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">I could deem as too much.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;">Honestly, one of the things that has hit me hard is the </span><span style="color: purple; line-height: 93%;">amount of weight gain the lack of productivity and </span><span style="color: purple; line-height: 93%;">motivation has left me with. The tablets I am on also </span><span style="color: purple; line-height: 93%;">do not help as one of the common side effects is weight </span><span style="color: purple; line-height: 93%;">gain. This is one of the parts of chronic illness that I wanted </span><span style="color: purple; line-height: 93%;">to talk openly about as I am sure it is something that many </span><span style="color: purple; line-height: 93%;">people are going through, whether they are suffering with an </span><span style="color: purple; line-height: 93%;">illness or just struggle to find the motivation. Exercise has </span><span style="color: purple; line-height: 93%;">become really daunting and as much as I would love to get rid </span><span style="color: purple; line-height: 93%;">of the extra weight, the pain and fatigue holds me back and it </span><span style="color: purple; line-height: 93%;">is just easier to sit and eat that slice of cake. Don't get me </span><span style="color: purple; line-height: 93%;">wrong, it does not matter what size you are as long as you are </span><span style="color: purple; line-height: 93%;">comfortable with that size. Unfortunately, I am not </span><span style="color: purple; line-height: 93%;">comfortable and since becoming a size 16, I have become </span><span style="color: purple; line-height: 93%;">more aware that my weight continues to increase. Most of my </span></span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">clothes no longer fit and the thought of wearing anything </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">relatively tight makes me uncomfortable. However, in all of </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">this doom and gloom there is a light flickering at the end of </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">the tunnel. You have to think about why you want to lose </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">weight. Two of my main reasons would be to feel like myself </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">again and to feel healthier. Although I am unable to control </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">the medical side of things, I can try my best to take some </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">control of my body physically. There is exercise that you can </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">do but, you just have to make sure you pace yourself and </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">don't over exert. I am trying to jump on the exercise bike </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">when I can but, not for too long and go to aqua aerobics when </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">I feel up to it. I just have to listen to my body and not work </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">against it and hopefully I will start seeing the benefits :)</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: purple; line-height: 93%;">In relation to productivity, many people living with a
chronic </span><span style="color: purple; line-height: 93%;">illness are aware of Christine Miserandinos spoon theory </span><span style="color: purple; line-height: 93%;">which I have only recently learnt about myself. The general </span></span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">idea of this theory is that someone suffering with a chronic </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">illness or chronic pain would start there day with X amount </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">of 'spoons'. This person will then exchange a certain amount </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">of spoons for each task (this would vary based on the </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">intensity of the task and how long it would take amongst </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">other things). The point of this concept is that you only have </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">a certain number of spoons to use on each day so you must </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">use them wisely. You can hypothetically borrow spoons from </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">the following but, this will leave you with less to use on the </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">next day. I have found this concept useful when prioritising </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">tasks and to make sure I do not overwork even on days when </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">I have the energy to do more. I would recommend the spoon </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif; font-size: large; line-height: 93%;">theory as something to be mindful of and also as a good read.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;">http://www.butyoudontlooksick.com/articles/written-by-</span><span style="color: purple; line-height: 93%;">christine/the-spoon-theory/</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;">I didn't write this post to get any sympathy and I don't
claim </span><span style="color: purple; line-height: 93%;">to know the ins and outs of what is best for you but, even if </span><span style="color: purple; line-height: 93%;">one person finds comfort in knowing that they are not</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><span style="color: purple; font-family: "georgia" , "times new roman" , serif;">alone when it comes to feeling unproductive, then to me this </span><span style="color: purple; line-height: 93%;">blog is worth writing.</span></span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-35677228116942540762016-06-04T11:00:00.000+01:002016-09-04T20:48:24.924+01:00Laughter is, and will always be, the best form of therapy<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Sometimes the hardest part about having a chronic illness is
not knowing what is next. Will I ever feel better? Will the pain ever become
bearable? Will I be able to work again? Have all of my plans for the future
become dreams rather than achievable goals? It is hard to have a vision for the
future when you can barely plan from day to day. It feels pointless to dream,
to set goals, to desire more from life . I have watched people I know start their careers, begin
to build their future and as much as I am happy for them, I honestly envy what
they have. It does sometimes feel like time stood still since I was diagnosed. <o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">So, how do you move forward when you are diagnosed with a
chronic illness that will never go away? How can you even begin to plan for the
future when you can just about cope with the present? Right now I am still
asking myself these questions and am not entirely sure how to answer them but,
I have been looking for inspiration.<o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Since resigning from work last year, I felt like I had lost
my sense of purpose. Working full time can result in you getting stuck in an
infinite loop of too much work, not enough sleep and a non existent social life. When I left I found it
hard to adjust to life outside of that loop as people I had met along the way began to drift and I no longer had a routine or an income. As much as it may sound like a
dream come true, not having to set an alarm and being able to essentially do
what you want when you want, it is not. I miss work. Yes, these are words that I
never thought would come out of my mouth. I do not miss the constant stress and
pressure that came hand in hand with the job but, I miss the sense of belonging
and purpose. It is near impossible to
find a work from home jobs that is legitimate and I would know, I have spent many
hours scouring the internet looking for one without any luck.<o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">It is important to remember that your diagnosis is not the
be all and end all and it is important not to dwell on it. The same goes for
anyone and everyone that is going through a turbulent time and do not see a way
out. You can’t start the next chapter of your life if you keep re-reading the
last one. If there is no way out then create your own. Don’t compare yourself
to others. We all have our good times, our bad times, goals and dreams and each
one is different from the next. When you feel like you are falling at the first
hurdle whilst your friends are racing ahead, it is so easy to measure yourself
against them. Your experiences will make you stronger and will better prepare
you for obstacles in the future. <o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Sometimes it is hard to even believe that you have any
strengths when you spend a lot of time feeling weak and defeated. It is easy to
focus solely on our struggle and pain rather than look at the bigger picture.</span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white;">One thing that has begun to help me believe that I do still have a bright
future ahead of me is a Fibromyalgia support group. At these groups find myself
surrounded by people that I don’t ha</span><span style="background-color: white;">ve to explain myself to and have learnt how
to deal with problems that I am only just facing. Surrounding yourself with
people who understand your situation not only gives you people to talk to but,
also gives you a sense of belonging.<o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Right now, instead of focusing on what you don’t have,
instead of focusing on the pain and fatigue, just focus on the present and
belonging in the moment. You can lose yourself in all of the stresses and
worries of everyday life that sometimes you can forget to take time out to
appreciate the little things. There are
so many beautiful reasons to be happy and although being in these situations
can make you feel like you have reached a dead end, these is a way of building
yourself up to be bigger and better than ever.</span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">My journey has only just begun for me but, I am determined not to let my condition define who I am and my future. </span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple;"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple;"><br /></span></div>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-44467186465761743962016-05-30T22:39:00.000+01:002016-09-04T21:18:32.788+01:00Tough situations build strong people <div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Maintaining a good, healthy relationship when an invisible
illness becomes the unwanted third wheel. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Relationships intimate or otherwise are usually a private
things that you keep quite close to your heart, locked away in its own heart
shaped box. However, when it comes to having a chronic illness or knowing
someone that does, you are not prepared for the impact it will have on your
relationships. As much as it is no one’s business what happens behind closed
doors, I find that reading about others experiences can be quite reassuring
when I know that I am not the only one going through it.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Maintaining a good relationship when one of you is reliant
on the other can be quite difficult. During my many hours of scouring the
internet and reading articles and blogs about my condition and ones that are
similar, I have rarely found anything that truly expresses how Fibromyalgia can
effect someone’s close relationships. In
this blog I wanted to be quite frank and open about everything that I have been
going through and this post will be no different. One of the main things I have
learnt is chronic illness does affect your relationships and shows you how
strong those relationships may or may not be. Not only do you find out the real
strengths and bonds you have with others but, you also find out who is willing
to fight your corner no matter what the problem is. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Living with variable health can make it near impossible to
plan things in advance as you don’t know how you are going to feel from one day
to the next. But what I have found is that you both need to acknowledge the
fact that you will not always be able to do everything that you want to. There
are days where I can only muster the strength to sit and watch countless films
on Netflix, drink infinite cups of tea and just enjoy my partners company and
that is ok. Some days I feel like I can go out and explore and these are the
moments I feel lucky to have, even if it means numerous days of recovery are to
follow. Pushing through isn’t always the
answer and if plans need to be changed then your health and wellbeing should
come first. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Thankfully, in my situation my partner is very understanding
and supportive. When we first met I wasn’t in the condition that I am in now
but, thankfully in his eyes nothing had changed and he doesn’t see me as the
girl with Fibromyalgia but, still as me. When I have bad days and spend endless
hours in bed, he still tries his best to keep a smile on my face. On days were
the pain is somewhat manageable, he makes sure that I don’t over do it but, we do make the most of this time before the pain rears its head again. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"> As Fibromyalgia gives off a negative outlook,
sufferers can find it difficult to keep up appearances leaving their partner to
feel the need to keep everything quite upbeat and positive. Unfortunately, on
days were your having a flare, have only had a few hours of broken sleep and
you have had to cancel your plans it is very hard to not feel like the world is
against you and positive thinking is hard to come by. I find that communication
is the key when dealing with something like this together but, you do have to
find a balance. It is easy to overload your partner with details of every pain,
every worry and everything that is causing you to stress but, this will do more
damage than good. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><span style="background-color: white;">I have someone I can always rely on and who stops me from
feeling guilty when I am unable to do things I once could. I can’t thank him
enough for continuing to treat me like Jodie and not a chronic pain patient. We have our little disagreements and arguments but, as much as </span><span style="background-color: white;">the pain tries to reek havoc, we always come out the other end stronger than ever. Find someone that will love you in any
condition and under any circumstances. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><span style="background-color: #8e7cc3;">P.S Just in case no one told you today … You are good enough
and don’t let anyone tell you otherwise </span><span style="background-color: #674ea7;"><o:p></o:p></span></span></div>
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><span style="background-color: #674ea7; color: white;"><br /></span>
</span><br />
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-36098505317655805662016-05-28T15:28:00.000+01:002016-09-06T13:04:57.704+01:00I know it sucks and its scary but its time to be brave<div style="margin-bottom: .0001pt; margin: 0cm;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0SdtVTQlRmmCzCiiEpt-fchc1QtkE2fyH3EdTcRHkc2JpEM2Li_3t6Q2-Mtbo7mZtofS6vnOiwIxQlEVxgMIYQw5w3j4azrWH1bOdtgYKe6K73JOEwfOX_mFGY2qlp2SKgzs3zv-b1UA/s1600/20160729_181242.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0SdtVTQlRmmCzCiiEpt-fchc1QtkE2fyH3EdTcRHkc2JpEM2Li_3t6Q2-Mtbo7mZtofS6vnOiwIxQlEVxgMIYQw5w3j4azrWH1bOdtgYKe6K73JOEwfOX_mFGY2qlp2SKgzs3zv-b1UA/s400/20160729_181242.jpg" width="225" /></a></div>
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span>
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">It is a scary and isolating place to be in when your health starts
to decline, especially when your life has only just begun. Only last year I was
able to go out, work and live a relatively normal life without pain and
fatigue, simple thing I took for granted. Now I have an illness that makes
getting out of bed feel like an accomplishment (and sometimes the only one).
</span><br />
<a name='more'></a><span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">More often than not I find it quite painful to walk and even trips that are
relatively short I find quite strenuous and find myself crashing as soon as I
get home. And then there was the moment that I realised that the only thing
that would help me get around would be a ... walking stick. Yes, even the words
themselves scared me. My mind went into overload and I just didn't want to
acknowledge that this was how bad things had got. What would people think?
Would I be able to deal with all of the questions? I'm only 22 I don't need a
walking stick, Walking sticks are typically for the elderly. <o:p></o:p></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-size: large;"><br /></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">My main concern was that a condition
considered visible was about to become visible, the hope of a cure slowly
ebbing further away. Sadly, having a walking stick and letting it be a visible
representation of your condition is quite often the only way people take it
seriously. In my case I do not look like I am suffering with any condition and
regularly get told that I look well and that there can’t possibly be anything
wrong with me. Don't get me wrong, I don't want to look really ill but, it’s
upsetting that people regularly assume that you are the picture of health just
because you look ok on the outside. What they don't understand is the battle
you are furiously fighting on the inside. <o:p></o:p></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-size: large;"><br /></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">When purchasing the walking stick I wanted
to choose one that didn't look too olde worlde. I never knew that there were so
many different options now and reluctantly paid for a floral walking stick that
looked sturdy yet feminine. However, as my hands and wrists tend to hurt I
found the stick painful to use. Since then my Dad brought me one that was more
comfortable for my hand as the handle was shaped in a way that would make it
more comfortable to grasp. <o:p></o:p></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-size: large;"><br /></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">I do get a lot of looks and stares when I
am out but, I try my best to ignore them, I can see that they are automatically
judging me for having a walking stick and still being so young as if I am just
using it as a prop or making some sort of fashion statement. Thankfully my
family and friends have been very understanding and supportive throughout the
last few months and always make sure I am not over doing it. <o:p></o:p></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-size: large;"><br /></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif; font-size: large;">I have come to realise that the only
people I need in my life are the ones who need me in theirs even when I have
nothing else to offer them but myself. I wouldn't wish what I am going through
on anyone and if I could take away this horrible condition that I have I would
do it in a heartbeat. People who judge are not worth your time and your time
and effort is much better being used for something more beneficial for you!<o:p></o:p></span></div>
<div style="margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-size: large;"><br /></span></div>
<span style="background-color: white; color: purple; font-family: georgia, "times new roman", serif; font-size: large;">I have learnt that having to using a
walking aid isn't a sign of weakness but, shows that you are not letting the
condition get the better of you. It shows you are brave enough to take control
of your own situation and not suffering just because of what others might say.
Like me, you might not feel like you are in the place in your life you want to
be but, although this transformation is hard, you are not falling apart, you're
just falling into something different, with a new capacity to be beautiful!</span>Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0 Hullbridge, Hockley, Essex SS5 , UK51.6170449 0.6167030999999951731.229831900000004 -40.691890900000004 72.0042579 41.925297099999995tag:blogger.com,1999:blog-3785727408043431670.post-18134294065000281272016-05-25T13:50:00.000+01:002016-09-04T21:16:29.970+01:00My experience with Employment & Support Allowance <div class="western" style="margin-bottom: 0cm;">
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">In light of the governments recent plans to cut ESA, I felt
it would be important to tell me story that is the whirlwind experience of
being lost within the benefits cycle.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">Those with long term illnesses like myself are unable to
work at no fault of our own. However, when you cannot work you have no
earnings, you lose confidence and in some cases your condition can deteriorate.
Yet all of those factors considered you are forced to apply for benefits that
make your situation worse. When I applied for employment and support allowance
I had no idea what to expect yet didn't expect to be faced with such a horrible
experience. </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">I was in the mists of finally getting a diagnosis but, as I
am sure you all know, appointments for specialists are very hard to come by and
even if you are referred the waiting period is endless.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">I live at home with my family and as much as much as I may
be in a better living situation than others, at 22 I wanted to be able to pay
my own way and not have to rely on the generosity of my parents. </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">This is what drew me in to ESA as I felt me condition was
progressively getting worse and I needed some sort of financial support to get
me by.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">I phoned ESA and made my initial claim which consisted of a
series of somewhat unrelated question. However, in hindsight this was the
easiest step and did not prepare me for what was to come. </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">After completing the 50+ page booklet that I had been sent
detailing different aspects of my health and how they effect me from day to day
the waiting game began. Unfortunately, at this point I had no evidence in terms
of necessary documents so my decision was solely being made from the booklet I
had filled in. </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">Soon after this I had a medical assessment. Now at this
point I thought that I would actually seen by a qualified medical professional
but, oh was I wrong. I was sat opposite a young man who was quite clearly there
to just type and read questions that had been provided for him. It was so
reassuring to know that my benefit was going to be left in the hands of such a
“professional”. The medical assessment basically consisted of me re answering
the questions I had previously filled out and a test of simple movements such
as moving my arms, legs and bending down. I felt very intimidated by the whole
experience as I felt like I was being interviewed. They seemed to be trying to
catch me out as if I would pretend that I wasn't well enough to work.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">Weeks after this the dreaded letter arrived in the post
stating that I had been awarded no points and was therefore deemed fit for
work. In all honestly in the eyes of these people if you can talk, type and you
look well you are the picture of health. I was gutted as I knew this was only
going to be the beginning. The medical assessment does not cater for those with
an invisible illness which makes it near impossible to not be overlooked. </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">I had to then go through a mandatory reconsideration
detailing why I felt that those who made the initial decision were wrong and
hope that the original decision would be over turned. It was not.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">Now my final stage was to then apply for a tribunal hearing.
I don't know how anyone else has felt in this situation but, I felt like a
criminal. I had no idea it would be so hard to get even the smallest amount of
support. Long story short sitting in front or the judge and qualified doctor
was a seemingly horrible experience. Any answer I gave to their questions was
torn apart and I was left with no leg to stand on. As the condition affects me
from day to day and brain fog can leave me unable to think clearly the judges
only response was that I would be capable of working a part time job as a
cleaner or receptionist as these jobs do not take any real intelligence. I was
upset and insulted by her blunt remark and at this point words had escaped me. Their
decision was not changed and all I was left with was a piece of paper stating
that I was fit for work.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">Since then I have had to claim Universal Credit and look for
work even though I did not feel fit enough to do so. I managed to get to the
interview stage of a job funnily enough working at the job centre as a work
coach but, as the interview drew closer I was becoming more unwell and was
unable to attend. </span><span style="color: purple; font-family: Georgia, "Times New Roman", serif;">I am now in the process of applying for ESA again as I have
no other choice. I am in a slightly better position than I was the first time
around as I do have a diagnosis however, I still do not have enough evidence to
back up my case. I am hopeful that within the 13 week period I will be placed
in the support group and deemed unfit for work but, at this time I cannot
predict what the future will hold. I do also now have the support from a
Fibromyalgia group that I attend and the ladies that I have met have been so
helpful and supportive.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">I feel that doctors are not fully educated in Fibromyalgia
and do not understand how debilitating and exhausting it can be. As they are
the first point of call when battling for a diagnosis I feel that they have
essentially jeopardised my chances of being able to claim as the essential
tests have not been done and the referrals are not being correctly made.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">I never wanted to be on benefits. I would love to go back to
work and start building a career but, right now this is not within reach and I
am not well enough to do so.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: purple; font-family: Georgia, Times New Roman, serif;">I am happy to answer any questions that people may have and
I have added a list down below of some of the things online that I have found
so helpful during the early stages of reapplying for ESA.</span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.benefitsandwork.co.uk/">http://www.benefitsandwork.co.uk/</a><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Georgia, Times New Roman, serif;"><a href="http://www.fmauk.org/">http://www.fmauk.org/</a><o:p></o:p></span></div>
<br />
<div class="MsoNormal">
<a href="https://www.facebook.com/groups/Phoenixfibro/?fref=nf"><span style="font-family: Georgia, Times New Roman, serif;">https://www.facebook.com/fibroawarenessuk/?fref=ts</span></a><o:p></o:p></div>
</div>
<span style="background-color: #e06666;">
</span>
<div class="western" style="margin-bottom: 0cm;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-68483339956902203982016-05-21T23:24:00.000+01:002016-09-04T21:19:12.984+01:00Your speed dosent matter, forward is forward<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">Everyday is a fresh start and sometimes the
smallest step in the right direction ends up being the biggest step of your
life. Today i felt that i took another one of those steps. I went along to a
Fibromyalgia support event with my mum, dad and boyfriend which allowed me to
take one positive step in the right direction. The event was not only about
finding out ways of dealing with the condition through mindfulness and
physiotherapy but, also about meeting others who go through the same daily
experiences. These are people that have had it for a number of years and it was
really inspiring to find out how they have managed to cope and how many still
manage to stay smiling. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
</span><span style="font-size: 13.5pt;">It is very difficult not to
focus on the negative moments that you battle each day but, these negative
thoughts can then contribute to your overall emotional state and make the pain
even harder to work through which i can personally vouch for. One of the main
points i took away from listening to the speakers today were that little steps
are better than none. As im sure many have you have been told time and time
again, exercise can have a positive impact on your life, not just physically
but mentally. However, as chronic pain can make exercise difficult and limit
what you can do, today we were told to only do as much as you feel able to do
and that you don't have to do it all in one go. On a day were you have a flare
up or are having a rest day, few key movements such as moving your legs or
lifting your arms, depending on what you are comfortable with, can have more
benefits than downsides. Many people, myself included, are scared of exercise
as they worry that in our conditions, it can do more damage but, as much as we
cant gauge how our pain and fatigue will be effected, exercise is proven to
improve your mood and well being. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
After months of coming to terms with my condition, pushing myself to hard and
beating myself up over not feeling that im doing enough, today has taught me to
listen to my body and take one step at a time. My condition isn't going to go
away and working towards looking after my body better will be a lot easier than
trying to fight against it. It can be very isolating when your body wants to
work against you than with you but, knowing that there will always be people
there for me on my good days and there to pick me up on my bad puts me in a
better mindful position. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
The moment that warmed my heart the most was witnessing the support from my
loved ones. They all made the effort to travel out to the event with me,
brought merchandise to support the cause and looked after me every step of the
way. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: #e06666; color: purple;"><span style="background-color: white; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;"><br />
I would love to hear about other peoples experiences whether you are suffering
yourself or know someone that does. I would also love to hear from anyone who
lives in North West London who has also been diagnosed with Fibromyalgia as i
have only spoken to people further afield :)</span><span style="background-color: #e06666; font-family: georgia, "times new roman", serif; font-size: 13.5pt;"><o:p></o:p></span></span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-36243292720876285452016-05-17T18:07:00.000+01:002016-09-04T20:42:10.167+01:00Have run out of spoons so im forked!<div class="MsoNormal" style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; line-height: 12pt; margin-left: 36pt; text-align: justify;">
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">The worst part about chronic pain is the
complete unknown. It will always be lingering in the background no matter how
your feeling, waiting to turn a relatively good day into a painful one. Nothing
in your life is planned because you can feel good today, or maybe even for a
week but, then out of nowhere you are back to square one. It’s not just pain.
It’s a complete physical, mental and emotional assault on your body.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">There are 7 types of pain that are
wrapped in the Fibromyalgia box. I felt it was important to break these down
into bite sized pieces that people like me could understand as the internet can
be full of technical terms and overwhelming information.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"> Three of these have a medical
definition:</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">Hyperalgesia: in short
this type of pain is described as our brains sending pain signals but at a
higher frequency than those without the condition. This causes an abnormally
heightened sensitivity to pain.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">Allodynia: Allodynia means
“other pain”. Imagine the feeling you get when sunburnt. Your skin is painful
to even the lightest touch. Now imagine this all of the time.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">Painful Paraesthesia: also
known as pins and needles is a pricking, burning tingling or numbing sensation
which is usually felt in the arms legs, hands and feet. In my case I generally
feel this in my feet. Imagine walking over hot burning coals all of the time.
This is pretty much how it feels on a regular basis.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">The other four are not
medically defined but, are just as important:</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">The Knife in the
Voodoo Doll pain: This pain I can describe as an intense stabbing pain that
feels like it is going straight through you. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">The Randomly Roving pain:
this pain is evidence that the pain from Fibromyalgia is never really concentrated
in one place and is pretty random. It can migrate from one area of the body to
the other with seemingly no reason</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">The Sparkler Burns
pain: This one is pretty self-explanatory. In my </span></span><br />
<span style="background-color: white; color: purple; font-family: Georgia, "Times New Roman", serif; font-size: 13.5pt; line-height: 12pt;"><br /></span>
<span style="background-color: white; color: purple; font-family: Georgia, "Times New Roman", serif; font-size: 13.5pt; line-height: 12pt;">experience I get this pain
most frequently in my hands. It feels like a </span><br />
<span style="background-color: white; color: purple; font-family: Georgia, "Times New Roman", serif; font-size: 13.5pt; line-height: 12pt;"><br /></span>
<span style="background-color: white; color: purple; font-family: Georgia, "Times New Roman", serif; font-size: 13.5pt; line-height: 12pt;">throbbing piercing pain that only
seems to get worse if aggravated and can </span><br />
<span style="background-color: white; color: purple; font-family: Georgia, "Times New Roman", serif; font-size: 13.5pt; line-height: 12pt;"><br /></span>
<span style="background-color: white; color: purple; font-family: Georgia, "Times New Roman", serif; font-size: 13.5pt; line-height: 12pt;">then trigger pain in other parts of
the body.</span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">The Rattled Nerves
pain: this pain in my opinion is one of the worst. It is usually a very
uncomfortable body ache that can start up in all different places in the body,
mine being mostly in my legs and back. This can then be joined by dizziness,
nausea and anxiety. It is said to be caused by stressful situations and
can potentially be triggered by loud sounds, flashing lights and large crowds.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">I never realised how much I took for granted – working,
shopping, socialising – until chronic illness came into my life and these
various types of pain became "normal" to me. Nothing has been quite
the same since but, I am trying my best to put on a brave face and work with
the body I have. I know it’s not going to be an easy journey but, we have to
live through the bad days to get to the good ones.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">You just have to remember that you were given this life because
you are strong enough to live it :)</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-41404590604633835352016-05-15T20:00:00.000+01:002016-09-05T12:31:55.346+01:00The only way to get better is to surround yourself with people who believe in you <div style="text-align: center;">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Yesterday marked a year with my boyfriend and I felt that this would be an ample time to talk about support. This condition can be very isolating and whilst some people will be happy to support others will take it as just another word they don't understand and have no interest in doing so.</span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
<div style="text-align: center;">
<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Thankfully my family and boyfriend are part of my close knit support network. They have made an effort to find out more about Fibromyalgia and are trying their best to keep a smile on my face and make me laugh. Without their support I don't know what kind of state of mind I would be in.</span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">I have also started attending a Fibromyalgia support group in Ealing where I have met some lovely people who know exactly what I am going through. It is inspiring to hear how others are dealing with the condition and to get advice from those who have battled the system to get the support they need.</span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">Sometimes we need someone to simply be there, not to fix anything, or to do anything in particular, but to just let us feel that we are cared for and supported.</span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;"><br /></span></div>
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<span style="background-color: white; color: purple; font-family: "georgia" , "times new roman" , serif;">My little fibro team may not be big but, I couldn't ask for better people to hold my hand along the way</span></div>
Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com1tag:blogger.com,1999:blog-3785727408043431670.post-768808966837307002016-05-13T00:32:00.001+01:002016-09-04T20:38:54.732+01:00I called my pain meds to say that they were meant to be stopping my pain. They said they liked that joke to. <div dir="ltr">
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;">Tablets, tablets and more tablets<o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;">I have enough tablets to set up my own pharmacy.
Doctors seems to be handing them out like penny sweets (not that hey exist
anymore unfortunately). To be honest, the tablets probably do as much good as a
fizzy cola bottle.<o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;">Since being diagnosed with Fibromyalgia, I have
been on two different tablets; Pregabalin and Gabapentin. Both, tablets are
presumably used to treat nerve pain as they contain Neuropathic pain
agents. The first tablets I was put on from the beginning were as much help as
a chocolate teapot. The idea is there but, practicality isn't.<o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;">Due to this I was changed onto Gabapentin. These
tablets came with a list of side effects as long as an English Winter and
seemed to overcome the supposed benefits. From day one I suffered with hallucinations,
hot sweats as if I was going through very early menopause and terrifying
nightmares to only name a few.<o:p></o:p></span></div>
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;">I have unsurprisingly found no relief since taking
these tablets. Although the side effects have thankfully begun to subside,
there has been no decrease in the pain I have been in.<o:p></o:p></span></div>
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<span style="font-size: 13.5pt;"><span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;">I would love to tell you all that popping numerous
tablets with names I had never heard of has miraculously made daily living more
manageable but, I would be lying and it just isn't the case.</span><span style="color: white; font-family: "times new roman", serif;"><o:p></o:p></span></span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-61823483769643348232016-05-10T20:52:00.001+01:002016-09-04T20:38:34.506+01:00"Hello, i'de like a refund on my body. Its kinda defective and really expensive" <div class="MsoNormal" style="margin-bottom: 0.0001pt;">
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<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;">My experience with doctors is far from a short
story and not a straight forward one. I have been in and out of the doctors
since I was a little girl rarely, ever getting the answers that I wanted. But
it is safe to sat that the last few years have been the worst especially since
I have been trying to find out what I was suffering from.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;"><br />
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I went to see my GP so many time that I
should have just set up camp in the doctors. I had seen every doctor in the
practice, all of them saying the same things and doing little to help. I would
tell them of the pain I was in and how tired I was and without a shadow of a
doubt I would be sent on my way with the same advice; Get some more exercise,
sleep more and find a better work/life balance. After I had had my bought of
B12 injections since previously being diagnosed with Anemia, I was simply made
to feel like a lost cause. As if the injections were meant to have been some
miracle cure. </span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
After an unexpected trip to A&E due to really bad pains in my chest, my mum
and I got talking to the doctor that I was seen by. We spoke about the pain and
fatigue I had been suffering with and she was surprised to hear that I hadn't
been seen by a Rheumotoligist. She promised to send a letter to my GP to urge
them to refer. All done and dusted right? Of course not. I waited ages for any
sort of letter to be sent over, religiously calling the hospital and hoping
that the doctor would keep to her word. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
After what felt like a life time and another appointment with my GP I was
finally referred. Obviously, there was a long wait for an appointment but, I
didn't care. I was finally going to be seen by someone who knew what they were
talking about and wouldn't palm my pain off as if I just had a common
cold. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
So the day for my appointment came and I was more excited than I should have
been. I took my mum along with me as moral support and was hoping for some sort
of miracle. I had an examination and the doctor checked a number of points on
my body and asked me i</span><span style="font-size: 13.5pt;"> </span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;">My experience with doctors is far from a short
story and not a straight forward one. I have been in and out of the doctors
since I was a little girl rarely, ever getting the answers that I wanted. But
it is safe to sat that the last few years have been the worst especially since
I have been trying to find out what I was suffering from.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;"><br />
<span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial;">I went to see my GP so many time that I
should have just set up camp in the doctors. I had seen every doctor in the
practice, all of them saying the same things and doing little to help. I would
tell them of the pain I was in and how tired I was and without a shadow of a
doubt I would be sent on my way with the same advice; Get some more exercise,
sleep more and find a better work/life balance. After I had had my bought of
B12 injections since previously being diagnosed with Anemia, I was simply made
to feel like a lost cause. As if the injections were meant to have been some
miracle cure. </span><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
After an unexpected trip to A&E due to really bad pains in my chest, my mum
and I got talking to the doctor that I was seen by. We spoke about the pain and
fatigue I had been suffering with and she was surprised to hear that I hadn't
been seen by a Rheumotoligist. She promised to send a letter to my GP to urge
them to refer. All done and dusted right? Of course not. I waited ages for any
sort of letter to be sent over, religiously calling the hospital and hoping
that the doctor would keep to her word. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
After what felt like a life time and another appointment with my GP I was
finally referred. Obviously, there was a long wait for an appointment but, I
didn't care. I was finally going to be seen by someone who knew what they were
talking about and wouldn't palm my pain off as if I just had a common
cold. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
So the day for my appointment came and I was more excited than I should have
been. I took my mum along with me as moral support and was hoping for some sort
of miracle. I had an examination and the doctor checked a number of points on
my body and asked me if each was painful or uncomfortable. I found that most of
them were and at the time didn't know what this meant. She later explained that
there are 18 different points that they would check and if more than 12 were
painful, this would suggest that I had Fibromyalgia. Now at this point I had no
idea what this was and only had a leaflet to go by but, I was glad to have
finally been given some sort of diagnosis after such a long time. </span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
Unfortunately, it isn't a happy ending as I was immediately referred back to my
GP without a follow up appointment. This led to my decision to change my
medical practice as after 16 years I was tired of not being taken seriously. My
new doctor has promised to help and support me throughout my condition but, he
wants to do everything his own way. Over the last few months I have been able
to find out from others with the same condition about, what doctors I actually
need to see in order to help me cope better. Its sad to say but, the battle has
only just begun and it seems that I will have to push more than I should have
to in order to see a specialist or to get the support I need,</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
My story continues .....</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div class="MsoNormal">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><br /></span></div>
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Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-48843395364511781872016-05-10T02:23:00.002+01:002016-09-04T20:38:08.119+01:00The thing about pain is it demands to be felt <div style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;">I
wanted to start by telling you my story. Before the diagnosis. I wouldn't say
that I was particular happy as I was feeling pain and emotional distress that
there wasn't a reason for. I was feeling uncontrollable amounts of fatigue that
didn't ever seem to subside.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
Ever since I left school in 2012 I have worked. My most recent job was
working as a staffing and operations supervisor at Victoria's Secrets. This was
until last August as in the previous months i could feel that my body was
starting to struggle. I knew that it wasn't just because of the unsociable
hours I worked or my muddled body clock.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
I had previously suffered with Anemia during secondary school and after weekly
B12 vitamin injections I was able to bounce back and complete my GCSE'S.
However, this time the injections didn't work. I felt so exhausted all of
the time. Any common cold or cough going around I would catch almost as soon as
someone had so much as thought about coughing. I was gradually having to take
more and more days of work although I desperately tried to turn up for work everyday
and try and work through it.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
This eventually became too much for me and with little support from my
employers I felt that my only option was to hand in my resignation and leave.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif;"><span style="font-size: 13.5pt;"><br />
It's safe to say that in the period of time after that and up to the present
day I have felt my confidence has slowly been ebbing away and my sense of self
worth. I hate being unable to build a career, have a steady form of
income and have to realise that I may never be able to work full time again.
This is something I daily find quite daunting and quite frankly
incredibly overwhelming.</span><span style="font-size: 13.5pt;"><o:p></o:p></span></span></div>
<div style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; margin: 0cm 0cm 0.0001pt;">
<span style="background-color: white; color: purple; font-family: Georgia, Times New Roman, serif; font-size: 13.5pt;"><br />
I don't want to be unable to live my life the way I want to because of this
condition but, the reality is that I can only live day to day.</span></div>
Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0tag:blogger.com,1999:blog-3785727408043431670.post-31800028579890205072016-05-06T23:03:00.000+01:002016-09-04T20:37:18.646+01:00& So the adventure begins +<div class="western" style="margin-bottom: 0cm;">
<div style="text-align: center;">
<span style="color: purple; font-family: Georgia, Times New Roman, serif; font-size: 16pt;">Wearing
a smile, a face of make up and keeping up a sense of humour. A few of
the things I use as a facade to hide the pain that comes with my
newly diagnosed condition. With this diagnosis my life has been
turned into that of nightmares. A painful story of which I never
thought would be mine to tell. With Fibromyalgia awareness day in the
mists, I have plucked up the courage to share my story. That of a 22
year old who has had normal life pulled from under her feet. As
Fibromyalgia is a condition not yet recognised I felt it was even
more important to share my experiences and reach out to those who
have felt the sting of a system that does not offer support and does
not understand the daily struggle. I want to extend an olive branch
to anyone and everyone with an invisible illness, know someone who
does or wants an insight into the condition first hand. </span></div>
</div>
Anonymoushttp://www.blogger.com/profile/11405443572781413568noreply@blogger.com0