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 :)

As mad as the hatter, as lost as Alice ⏳

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.

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. 

Life is tough my darling but so are you!

Almost a year ago now I was working 40+ hours a week running here there and everywhere to get things done and spent my days off resting for the busy days ahead. Now my life consists of numerous doctors appointments, waiting for referrals, filling in benefit forms and remembering to take tablets.

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).

My experience with Employment & Support Allowance

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.

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. 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.

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. 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.

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. 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. 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.

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. 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.

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.

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. 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.

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.

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.

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.

http://www.benefitsandwork.co.uk/

http://www.fmauk.org/

https://www.facebook.com/fibroawarenessuk/?fref=ts

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 :)

& 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.