A lot can change in 10 years. 10 years ago today I was preparing for a hospital appointment the next day. Little did I know that hospital appointment would mark the beginning of so many things; being believed by a doctor, being diagnosed with a life limiting illness, being disbelieved by people, being sofa bound, being housebound, being cared for and so much more.
I’ve spent a decade with M.E. now and slowly but surely things are changing. Word is getting out that it’s not just ‘all in the head’, that it is a physical illness. The support networks available now are truly amazing.
10 years ago we had only just got broadband, there was only one computer in the house for the whole family to use. I was too ill to go out, I couldn’t go to school so slowly friendships dropped away – lets face it at 12 if you weren’t at school for a few months you could be easily forgotten – I ended up isolated. It felt like I was the only person in the world going through what I was dealing with. But gradually the internet grew, I got my own PC I discovered charities for people with M.E., people going through the same thing. Nowadays the internet is my lifeline. I have a personal computer, smartphone and tablet. I’ve found communities of people suffering from the same illness, the same symptoms, people who I can talk to about living with a chronic illness. The support they offer is truly invaluable. Without them I would once again feel isolated. I can honestly say the internet has changed my life for the better.
The past 10 years have seen their highs and lows, there’s been improvements, relapses, little blips but I’ve come through stronger than ever. I’ll admit this time 10 years ago I really couldn’t see myself getting better, I couldn’t see a way through the pain, exhaustion and other symptoms I was experiencing especially when no one would believe I was ill. But slowly and surely, by taking one day at a time I’ve made it through. I’ve seen some highs – walking into the town centre, doing some shopping and walking back unaided in 2010 – and I’ve seen some lows – a massive relapse in 2013 sending me to the worst I’d suffered with M.E – but I’ve kept going.
I honestly don’t know how. Looking back at just the last 5 years I can’t fathom how much has changed and what I’ve achieved. Two courses at the local adult education centre, starting my degree, going from walking unaided to being sofa bound again, keeping going with my degree, improving from sofa bound to walking with crutches, getting two thirds of my way to a degree. I’m sure there’s a helluva lot more I could mention, but these are the things that stick out for me in those five years. Pure determination not to give up, plus some brilliant support from friends, family and the online community has got me through.
10 years ago I’d never heard of M.E. or CFS I got thrown in at the deep end and had to learn about it through having it, and my family had to learn about it through seeing me suffer and helping me. But things are changing, slowly articles are appearing in the media accurately describing what it’s like to have M.E., the symptoms and effects it has on peoples’ lives. Sadly there are still many inaccurate articles published but the tide is turning; people are beginning to have a rough idea of what M.E. is, no matter how sketchy that idea is it’s a start.
I don’t expect things to change overnight, heck if there’s one thing I’ve learned in the past 10 years it’s that you have to be patient to see improvements and changes, attitudes towards M.E. are slowly changing, research is being conducted and days like today are playing a big part; Today is M.E. Awareness Day. A day when people with M.E. spread their stories through social media, local media and any other way they possibly can. It takes a lot of courage and precious energy to do so but we do it because we need things to change. We don’t want any future sufferers to have to go through what we have been through and are going through. We want the diagnosis to be there for them, the support to be there for them and ultimately if not the cure than the treatment to be there for them. This is the day we spread awareness of our fight for that.
With this in mind I’d like to remind you that I’m spending today dressed as a Princess in order to raise money for Invest in ME who are a small charity doing a fantastic job at raising awareness and funding much needed research into M.E. If you can spare even a pound to sponsor me I would greatly appreciate it. You can do so by texting PCJW78 followed by your donation amount £1, £2, £3, £4, £5, or £10 to 70070 or by donating online at http://www.justgiving.com/PrincessClare I shall of course post all the photos on this blog in the coming days but in the meantime head over to the Facebook page or @ALifeWithinME on Twitter!