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. 

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 :)