We travel not to escape life, but for life not to escape us

This 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 :)

Fibromyalgia, Its like having a hangover only without the party

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.

On the 24^th 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.

 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.

 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.

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 :)

"I lost myself somewhere in the darkness"

“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.”

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.

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

I Believe You!

(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.)

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. 

Laughter is, and will always be, the best form of therapy

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.

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.

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.

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.

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.

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 have 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.

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.

My journey has only just begun for me but, I am determined not to let my condition define who I am and my future. 

I know it sucks and its scary but its time to be brave

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).

Your speed dosent matter, forward is forward

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.  

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. 

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. 

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. 

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 :)

Have run out of spoons so im forked!

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.

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.

 Three of these have a medical definition:

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.

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.

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.

The other four are not medically defined but, are just as important:

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. 

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

The Sparkler Burns pain: This one is pretty self-explanatory. In my 

experience I get this pain most frequently in my hands. It feels like a 

throbbing piercing pain that only seems to get worse if aggravated and can 

then trigger pain in other parts of the body.

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.

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.

You just have to remember that you were given this life because you are strong enough to live it :)

The only way to get better is to surround yourself with people who believe in you

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.

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.

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.

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.

My little fibro team may not be big but, I couldn't ask for better people to hold my hand along the way

I called my pain meds to say that they were meant to be stopping my pain. They said they liked that joke to.

Tablets, tablets and more tablets

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.

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.

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.

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.

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.

"Hello, i'de like a refund on my body. Its kinda defective and really expensive"

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.

 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. 

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. 

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. 

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 

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.

 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. 

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. 

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. 

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. 

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,

My story continues .....

The thing about pain is it demands to be felt

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.

 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.

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.

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.

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.

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.

& So the adventure begins +

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.