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

Tough situations build strong people

Maintaining a good, healthy relationship when an invisible illness becomes the unwanted third wheel.

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.

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.

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.

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. 

  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.

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 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.

P.S Just in case no one told you today … You are good enough and don’t let anyone tell you otherwise 

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