I haven’t written anything in a little while, and with ME/ CFS awareness week being last week (I know… I’m a little late), this seemed like the perfect opportunity. So, grab a cuppa or a glass of wine and put your specs on… it’s going to be a long one!
For those of you who don’t know me, I suffered quite badly with ME/CFS through my teens and early adulthood. I guess I still do have the odd issue these days, but nothing compared to when I was younger. When I was 15, I went from being a normal active teenager going to the gym, meeting up with friends and taekwondo lessons twice a week to being bed bound and eventually becoming severely ill for a number of years.
It started for me with joint pain, some days I could hardly walk and it all escalated from there. Over a short period of time I then started having issues with my sight, I couldn’t eat or drink, I was severely exhausted all the time, my whole body hurt in ways I can’t describe, my joint pain was severe, I lost a lot of weight and at times I had to use a wheelchair. For someone who has never suffered from an illness like this, it is really difficult to make others understand that you’re not ‘just tired all the time’, and while I looked ‘fine’ some days I really wasn’t.
I remember the last day I spent in school… one of the boys in my maths class hit me across the knees with a metal ruler because he said I was ‘faking it’. At the time I could hardly walk as it was, and needless to say that this didn’t help! A few years later he apologised, but at the time this was just the final nail in the coffin. I never went back to school after that, and I was tutored from home from then on.
During that time I lost nearly all of my friends, which at any point in your life is difficult, but as a teenager your friends are such a large part of your life so I found this incredibly difficult. However, the remaining few I will always be eternally grateful to (you know who you are!). Those people in particular stuck by me at my worst times. They visited me at home, and would bring me things to help me feel better. The best part was that before I got ill I had a small group of friends and the ones that stuck by me weren’t the ones who I expected would. One of life’s many lessons I suppose.
My whole world felt like it had caved in, and the worst part was that in the beginning people just thought I was attention seeking, making it up. It took months to get a diagnosis, and then when I did I was just left. No guidance, no advice on how to manage my symptoms… nothing. For a few years I really thought that this was going to be my life forever.
It’s really important to remember that my mum had to care for me as well as my brother during this time. There was a lot I couldn’t do for myself, so my poor mum was run ragged between us to say the least. When I first fell ill to say me and mum didn’t see eye to eye would be an understatement. We made a pact a few months in when we realised that this was going to be a more permanent situation, that we would always be honest with each other, and learn to ignore the things about each other that pissed us off about ourselves. From then, my mum has been my very best friend and we are closer than ever these days. It’s actually funny to think back to how much we never used to get on because it’s such the polar opposite now!
But… with a lot of determination and support from my family (but mainly my mum) I slowly started to do very small things and built myself up very slowly over time. This was probably one of the most challenging things I have ever had to do. It was really tough both physically and mentally, and I would often get knocked back to the beginning from trying to do too much and end up laid in bed for days/ weeks. This was an ongoing cycle for quite some time, but each time I would manage to do something more no matter how small it was at the time.
I passed my GCSE’s with only 2 hours home tuition a week (as this was all I could physically manage), I did a select few A-levels (2 to be exact) and applied to go to university. Now, did I think I would actually manage to go to uni… no I didn’t. But I applied and I looked anyway… and then I DID end up going, much to mine and everyone else amazement. And not only did I go, but I moved 300 miles away from home… talk about a baptism of fire!! Crazy thing to do when I look back on it now. How I’m still not quite sure, but I did it. It was hard and I ended up back home really ill a couple of times but this was really the turning point in it all for me. I still have no idea what it was, or why but I got through my degree and still came out the other side alive and kicking. I think some of this was partly because I had to manage. I didn’t have a choice or anyone to look after me, I was on my own in a city I didn’t know with people I didn’t know.
I can honestly say that this was one of the most difficult times in my life, but I am so proud of myself for how much I have managed to achieve despite having lived with ME for 12 years now. This isn’t something I would usually say, but it does some good to recognise what you’ve been through and how far you have come. I have definitely come out the other side stronger and more determined than ever.
To this day still no-one knows what causes ME/CFS which is a really worry considering how much this affects your life, and can to such a severity. ME/CFS is slowly becoming more widely known, but it is still very much an ‘invisible illness’ and a one with a lot of stigma attached to it. I saw on the news last week that they are working towards being able to test blood for ME which would be such a huge breakthrough for it to be more easily detected, and possibly eventually curable.
I wanted to share my experience of ME (well in a brief way as I could go on forever!) so that hopefully others can see that there is light at the end of the tunnel no matter how much of a dark place it is right now. Celebrate your small successes such as brushing your hair yourself, or managing to have bath on your own, as much as your big one’s like walking to the bottom of the street and back. These may be small to other people, but they’re important to you and that is all that matters.
Remember it takes someone with incredible strength to battle through what you are right now so be proud of your successes no matter how big or small 🙂