Hello lovely readers, I cannot believe that M.E. Awareness Week is drawing to a close as is the month of May; the awareness month for M.E./CFS. It’s been exhausting trying to raise awareness in any way I could but it’s worth the pain!
Following on from my previous article this week about the lonely battle of an M.E. sufferer, I would like to dedicate a post to my favourite fellow M.E. Bloggers to conclude this wonderful week of raising awareness.
Some years ago now, I became incredibly ill with an incurable chronic illness. I was paralysed for months and months and left bed bound for years. I couldn't walk, I could hardly talk and I even suffered memory loss too. It was during this time I was inspired to start this blog, from my sickbed in an attempt to help keep me sane. Here I share my story and my journey whilst meeting some lovely people along the way. It has become a lifeline to me and in many ways blogging has saved me. I'm still adapting to life with an incurable illness, but I hope to one day be well enough to start doing all the things I want to do, and follow all of my hopes and dreams. I won't let illness win!
In January 2009, at the age of 15, I was diagnosed with an incurable chronic illness known as Myalgic Encephalomyelitis. I meet, and often exceed, both the ICC (International Consensus Criteria) and CCC (Canadian Consensus Criteria) for M.E. I became ill after having several seemingly innocuous viral infections in September/October 2008. Prior to this I had always been very healthy, enjoying school, music and sport, so it was a bit of a shock to become so ill so suddenly.
At the start I was severely affected: unable to tolerate being upright; in constant, unbearable pain; noise, light, sound and touch intolerant; feeling horribly faint and dizzy; too weak to move my arms and legs; struggling to form coherent thoughts or sentences; and occasionally even struggling simply to breathe (possibly due to intermittent nerve and muscle paralysis). I remember very little of this time – I don’t even remember being diagnosed or, indeed, who diagnosed me! I was fortunate to find myself in the catchment area of the RNHRD paediatric ME/CFS team, who taught my parents the importance of rest and pacing, preventing further neurological damage. It felt like I was being tortured, but over the space of two years and with the limitless support of my wonderful family, I managed to increase what was a painfully low baseline to something starting to resemble normality. This involved increasing my time at school from nothing, to barely 10 minutes a day, until finally I was attending school almost full-time. I was told initially that even getting 2 GCSEs would be an achievement, but (much to my surprise!) managed to leave school with 3 A*s at A level and go to university.
I started at Durham in 2012 but not long after, in November 2012, developed new neurological complications when I started having seizures and episodes of intense muscle spasm (dystonic spasm). Then, in February 2013, I had my worst relapse (in terms of reduction to level of functioning) to date, and was brutally reminded of the cruel realities of this illness. After consultations with multiple neurologists, it would seem that I have various movement disorders which would appear to be secondary to my ME and the damage this has caused my brain and nervous system. One neurologist thought that I also have POTS (Postural Orthostatic Tachycardia Syndrome). I’m currently undergoing tests and hope to know a bit more about these complications soon – although I've learnt that with ME nothing is ever certain!
One of my favourite quotes is “you cannot find peace by avoiding life” (quoted from Virginia Woolf in The Hours). I started this blog in late 2013 as part of my wish to embrace my “life with limits”, accepting that which I cannot change and constantly seeking out the silver linings.
Here's a few random things you might want to know about me...
- I love to write, mostly fiction. When I'm not jotting down new ideas, I'm thinking about them, I can't help it, argh!
- I love change and new things, oh the excitement..
- I tell myself that my choice to not eat meat makes me a greater person than before but I can't say that I've proved much of a point to myself yet
- I was away from school and my age group for a long time, so I often disregard my age.. It doesn't mean much to me I just act the way I feel appropriate and use my common sense to help me sound intelligent in the process..
- I like deep conversation, do you want to delve into a deep conversation with me?
- I have a constant tendency to make farm animal noises but everyone hates it..
- I am a spoonie - the term used to describe a chronically ill person
I'm here mainly to write about and raise awareness of the illness, Myalgic Encephalopathy (M.E/CFS) with intentions of making other sufferers feel a little better and less alone along the way.
- If I had never gotten ill, I would probably be a flight attendant right now. Yeah.
After being diagnosed with an incurable and disabling illness in 2012 my life was totally flipped upside down, but starting Meg Says as a project that I could put my effort and heart into in March 2013 was the best decision I ever made. I'm still on medical leave from my university degree, 80% housebound and often unable to complete the smallest daily tasks, but I'll get there. Through starting my website I've landed a job in PR as a health & beauty writer and social media manager, learnt more about myself than I ever expected and made true, lifelong friends - which may be why I'm so passionate about blogging!
Despite having a chronic illness that makes all of this difficult, I put a lot of time into Meg Says and truly appreciate yours - I really hope that you enjoy reading what I've got to say.
It has been an incredible month raising awareness for an illness that has tried its hardest to dictate my life for the last four years. But the battle still goes on. To repeat something I said recently; It is one of the greatest hurdles in life to battle it alone. But what I have learnt in the last four years is that I’m not alone. There are so many people who suffer the same pain I do and that fact gives me the strength to carry on fighting. I know now that we all stand side-by-side in this war and one day, we shall reign victorious and the world will see the day when Myalgic Encephalomyelitis will be recognized by all as a disability.