We travel not to escape life, but for life not to escape us

This blog post is a little different from the ones I usually write but, I wanted to talk about something positive which is unfortunately quite difficult when talking about chronic illness. Sometimes all you need is some fresh air, a change of scenery and some good laughs to make you feel better, even if only for a week :)

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

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 :)