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

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.