Category Archives: Disability

Since this month is M.E. awareness month, I decided to write my column about how I turned my life around after becoming really sick, I thought you guys might like to read it too.

If you’re a regular reader of my column then you’ll know that I’ve mentioned before that I suffer with chronic illnesses. One of these illnesses is M.E. (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome. I mention this because May is M.E. Awareness month. The condition itself is wildly misunderstood by the general public and, in many cases, by the medical profession. The illness is mysterious and unpredictable, however, the M.E. Association estimates that there are over 250,000 people in the UK whose lives are effected by M.E.

I have had M.E for my entire life, although I was only diagnosed when I was 14. Throughout my life the symptoms have varied significantly. During my GCSE years I was largely unable to attend school. For most of my A levels the symptoms were relatively mild. For the past three years, however, I have spent month long periods in bed and have deteriorated to not being able to leave my house without a wheelchair or mobility scooter.  The condition affects every areas of my life now, everything from washing, to using a phone, to my sex life is impacted.

I would love to give you a M.E. master class right now, because I know that many of you might not have heard of it before, or don’t really understand what it means.  Frankly, I’d need a lot more than one page to do this, and my editor, for some obscure reason, wasn’t happy about making the whole paper devoted to my column.

I can, however, introduce you to spoon theory. Spoon theory is something developed by Christine Miserandino to explain to a friend what living with Lupus is like, but sufferers of various chronic illnesses have found the theory useful. Christine took five spoons, representing the amount of energy she has for each day.  Washing in the morning costs one spoon. Getting dressed might cost one spoon, making breakfast another. That’s three of the five spoons gone by breakfast. That means there’s only two left for my whole day. Spoons cannot be recovered, once they’re gone, there’s nothing I can do but sleep for the rest of my day. Chronic illness sufferers have found this analogy so useful that many of us have adopted the title ‘spoonie’. On Twitter, Tumblr and most other social media you can find a community of ‘spoonies’.

As you can imagine, I have felt like a prisoner in my own body. It’s a sensation which can be truly devastating. You can feel like you’ve lost everything. I learnt, however, that I had to grieve for what had gone. I had to learn to let go, otherwise I would spend the rest of my life bitter for what I should have. I wasn’t giving up, I was accepting that I would never be able to push my body in a way that healthy people do. I needed to accept the reality of my situation. You can’t manage M.E if you’re delusional, if you ever hope to regain control you need to be aware of what you can actually do. Accepting my physical limitations was very difficult for me, but it was clear that if I didn’t then I’d spend my in a pit of depression.

I have often comes face-to-face with stigma associated with my condition. I’ve experienced scepticism from strangers, doctors and even people who love me. I often get told that I would feel better if I had a bit more sunlight or ate more vegetables. Possibly the most infuriating is when people suggest that I just need to try walking. This never comes from a malicious place, people want to help, but they don’t know how to.

Over the last two years I have actively tried to raise awareness about my condition. One of the most important things that I have learnt is that by only talking about the ‘bad’ things, I’m only telling half of the story. M.E. has changed my life, but it hasn’t killed it. While I have had to let go of an old life, I’ve been fortunate enough to gain a new one. I’ve found a way to communicate the struggles whilst still focusing on the positives. I’m passionate about emphasising that it’s not all bad, but I also realise that no good can come from covering up the hardships. All it causes is ignorance in observers, and pain in sufferers.

Looking back I can see that there were three ‘stages’ of turning my life around, and to start living life, rather than just existing.

The first step for me was to change my perspective. My condition is bad, it’s debilitating, but I’m not dying, and I’m not even the worst M.E. sufferer.  This came to me as a bit of a revelation. I was being taken out of hospital, and on the way we passed the child cancer unit. It struck me that I could be so much worse off than I was. No matter how much pain I’m in, I know that I’m going to survive.

Secondly, I had to stop comparing myself to healthy people. I might not be able to go out, or take advantage of the opportunities that the average student might be able to take, but I have other things to be thankful. It is through my illness that I discovered my love of writing. Being stuck in bed all the time gave me a lot of time to work on this initially as a hobby, and now hopefully as a career.  If I wasn’t sick maybe I wouldn’t have this column or had a blog which, let alone be shortlisted for the Cosmopolitan Lifestyle Blog awards of 2012. There’s a verse from the Bible, which I always use to encourage myself in this respect. It says that God can use any bad situation for good. Whether you believe in God or not, I think that this is an idea which anyone can draw strength from.

Finally, I had to change the way I saw myself. Partly this is to do with body image- I can’t exercise, the medication causes me to gain weight, and sometimes the only activity I can manage in a day is to eat. I’ve had to learn not to be bound by what society might say is beautiful, and recognise the beauty that I have. I also had to stop seeing myself as a victim. I’m not a victim to my illness. I’m a woman who fights her illness every single day.

We can’t control what happens in our lives. I can’t control the fact that I have this chronic illness. What I can do, however, is control how I respond to it.

Posted by Katie Bennett-Davies in Depression, Disability, Fibromyalgia, M.E./CFS, ME awareness Tags: CFS, column, depression, fibro, fibromyalgia, Gair Rhydd, M.E. awareness month, May, ME, optimism, positivity, spoon theory, spoonie