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.

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