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 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. 

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