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| Article written for the M.E. Association |
Before M.E. I had my whole career planned out but getting ill with M.E. changed those plans and I’m still trying to figure things out and I’m still unsure what I want to do with my life now career wise because of all the barriers I face because of my disability. One way M.E. has changed my life is in the way that it’s given me a voice to share my story and experiences to raise awareness. I’ve worked with M.E. and disability charities doing a variety of opportunities that I otherwise wouldn’t have done if I hadn’t of gotten ill with M.E. I also wouldn’t have started this blog or my YouTube channel too if I hadn’t of gotten ill either. As well as that I wouldn’t have started my fundraising project selling my handmade cards either.
Another thing M.E. has done is make me realise and work out who my true friends are as well as finding true friends. This has both been difficult and deeply painful but also wonderful making true connections when I realise who are the people that matter the most.
I’ve also come to realise that the chronic illness community isn’t for me. At first when I got ill I was really in with the chronic illness community and at the time in some ways it helped me adjust as my life changed into one with a chronic illness. However personally over time I started to see the community a different way and I found it a negative and competitive space at times. Yes I’ve met friends through the community but photos of a hand holding pills, a bag of saline hanging on an IV pole and posts where people were in competition to be ‘the most ill’ wasn't for me. Personally I prefer to raise awareness in a more positive way and in a way that encompasses my whole life; not just the medical me. However I do know that some people find comfort and their place in the chronic illness community so I respect that.
M.E. has also changed me to become a stronger person by challenging me. To handle the bad days, the pain, countless symptoms, extreme fatigue and everything else it’s thrown at me. M.E. has also taught me my limits. There’s this quote that I love:
“There are things that are possible; things that are impossible, but otherwise, I think that within my restrictions anything is possible.”
Getting ill has taken a lot away from me in lots of different ways and aspects but I try to focus now on what I can do each day and within what I can do there is still a lot and I’m thankful for that. I’ve also learnt gratitude since becoming ill and that’s changed me too. I’m grateful more for the small things, like a letter from a friend, my PA making me pancakes, going out to the postbox, time in my garden on my swing seat or enjoying a good book.
My M.E. has also changed my life in other ways too. I’ve grown in confidence; I’ve had to but it’s not always been easy. It’s been difficult at times to accept the deterioration with my health and thus the need for things like mobility aids and care but I’m now a happy ambulatory wheelchair user (with my jazzed up wheelchair) as well as having pretty crutches (who says mobility aids can’t be pretty?!) and care is just something I’ve just had to accept I need. I’m also more confident now to speak up for myself when needed, such as speaking up for my needs.
The ways M.E. has changed my life negatively is the deterioration in my illness over the years which has been hard. I go through big crashes and find a ‘new normal’ then other times I crash and return but there’s always the worry about crashing and having to get used to a ‘new normal’ in which my M.E. has slightly or significantly worsened each time. Other ways M.E. has changed my life is the increase in isolation because I’m not able to be in education or work and all my friends live in other parts of the UK or overseas, I don’t have any local friends and I’m not in a position to meet new people locally either.
So yes M.E. has changed me a lot; I don’t think I’d be the person I am today if I hadn’t of gotten ill. Both in a physical sense in terms of now living with a disability and my life mapping out differently but also what I’ve learnt over the years. The things I learnt about myself and about life, to be more resilient, grateful and stronger etc. as well as to be my own advocate. To work within my limits and remember that within my limits the possibilities of what I can do are endless. There are days when I hate my M.E. (and I have a lot of them) life is challenging; the world isn’t perfect for disabled people and services for M.E. are few and far between as is the knowledge about the M.E. make having this illness difficult to say the least. But in the other ways M.E. has changed my life I’m thankful for all it’s given me, for all the opportunities I’ve done and I’m yet to do and to be and advocate for others with this illness.