I have been ill for 4 years now and in the early years, I could hardly move, without feeling pain and complete and utter exhaustion, together with a whole host of other problems. This came shortly after a time in my life where I was blasting single tracks on my bike and walking with my kids most days!! I don't want to bore you with the details of my illness, but when I watched this video, I just felt that people need to see it. I am a text book M.E patient, therefore meaning that my illness started as a result of a virus. I contracted Viral Meningitis first, then Anterior Uveitis, then Shingles, then Labyrinthitis (the straw that broke the camels back). By the time I fell ill with M.E I had already had at least 20 or more episodes of shingles, something I still struggle with on a very regular basis, despite being on a suppressive treatment program. Surely with a viral history like this, one would think that the doctors would identify the problem and start looking at ways in which to improve immunity, no instead the doctors told me I had sever anxiety and depression and told me that anti-depressions and exercise will sort it all out. Being particularly stubborn in nature, I got on my bike and thought right, I will ride this 'mental problem' out of myself even though I knew something much bigger was going wrong! Well, what a big mistake that was, I didn't get up the next day and for many months after that. Exercise is the VERY LAST thing people need in the early stages of M.E, they need rest and good quality rest. The most infuriating thing I have experienced since being 'officially diagnosed', was sitting in front of a Doctor who told me that she didn't 'BUY' M.E, what a disgrace!!!
I know that I am really fortunate, and there isn't a day that goes by where I don't feel grateful that I am no longer in bed most of the time or moving around like a zombie for the rest. I have learnt many lessons through my journey with M.E, but one of them is to be grateful for the little things in life and fortunately for me I am a really positive person, which has been a blessing. I am lucky enough to be up and about for longer periods in the day now and I really enjoy spending more time with my family and seeing my children grow up and there is also the enormous pleasure I get from creating. This is all still only largely happening in the confines of my four walls, which can drive one a little doolally sometimes, but I have gotten much better at accepting this and being happy with it. Even though I can drive again, only for very short distances, I have to calculate everything, how many steps to the entrance of the shop, can I park right by the door as I still need the wheelchair for longer distances. If it is any further, I have a choice, do I go and pay the very HEFTY price tag that comes with it tomorrow and the next few weeks after that, or do I stay? I can't walk my kids to school even though we live a stone throw away from the school, I can't take them to a proper park and parts of my days and weekend are still spent lying in bed. Some days I feel like rebelling and I read blogs on my phone, but I know it is taking away from the rest my mind and body needs and it usually results in me not coping very well later that day, but sometimes we need to live a little on the wild side right?! I still need at least 2-3 hours in bed every day and on the weekend I don't get up till 1.30pm, unless it is the Treacle Market (once a month) where I have my little treat, but I know there is always a price to pay, but for me a price worth paying.
About a year ago, I started a blog about my journey with M.E, I managed all of two posts as I just couldn't do it. I just couldn't write about how I was feeling and for me it was simply just much more of what I was already experiencing every minute of the day, possibly a bit too negative for me, possibly a perspective problem on my part, but I decided against it. Instead I wanted to look at pretty flowers and lovely cakes and pretty crochet. There are some really amazing M.E blogs out there that offer so much support for people struggling with this. For the first two years I was completely unable to read blogs or go on the Internet, in fact I couldn't even read the most basic books to my kids. So in January I decided that I needed to do something about this dead brain of mine, so with a view to do some 'graded exercise' with my brain, not my body as prescribed, hopefully a chapter that will follow in the near future, I started Cosmos and Cotton. I am still really struggling with this and most days it really takes it out of me to read and write, so writing this blog is really hard work for me, but I have resigned myself from the fact that it is not going to be the most coherent blog in the world and I am most certainly not a gifted writer, but it is my little place where I can come and sit and hopefully start the engine for a little fun.
It wasn't my intention to write about M.E on this blog, but this is my journey and seeing it plays such a big part in my life, I need to make others aware that more needs to be done to get funds for the necessary research so that one day there will be some positive treatment that will help people. It kills me to know how many young children are missing out on a life because of their struggles with M.E, why oh why?!! I know they are doing studies with various different drugs, but we are still a long way away from having something out there to make 'professionals' respect and treat this condition in the same way that they deal with any other major illness.
Knowledge is power, so please watch this video and share it with your family and friends so that others can also get a better insight into this very debilitating condition.
Thank you for reading all this, I know it was a mouth full.