Symptoms of ME/CFS
The response I get when I tell someone I have ME is usually "what's that?" or "the one where you get a bit tired, right?" A specialist doctor told me to prepare for something to go wrong with pretty much every bodily system, and after living with moderately severe ME for quite some time, I can safely say she wasn't wrong. Granted, 'the basics of what ME is and does' isn't the most exciting or imaginative post, but getting all the necessary bits and bobs out of the way means everyone who has never heard of ME gets formally introduced.
Neurological and cognitive problems
I HAVE M.E., AND IT SUCKS. BUT HERE'S SOMETHING THAT YOU NEED TO KNOW...
'Jay' McCarthy writes:
Here is an open letter I wrote to my social media 'friends', in an attempt to break down some misconceptions about living with M.E and how their expectations of me might need to change. It's quite long (sorry!) But a few friends have asked me to share it as it was helpful for them to have to show their friends too. If you think it might be helpful for other page members or followers, please feel free to share it. If not, feel equally free to disregard!
Here is what I wrote to them...
I have M.E, and it sucks. But here's something you need to know:
I DON'T HAVE A BLOODY CHOICE!!...But YOU DO.
It won't go away just because you like [or need] to pretend it doesn't exist. My pain does not lessen just because you are able to ignore it.
When you see me out of the house, I am 'faking'. Infact, I probably lie to your face every single time I see you, particularly when I say things like 'I'm fine'. So in a way, you are right not to trust me, because the me you see is not real anymore. She is but a cheap hologram of what I was before. Cleverly compiled to fool you. The actual me is locked inside a broken body and a tired mind, using up every ounce of energy to keep you fooled...and sometimes me as well. But I am ok.
Having M.E does have a massive impact on my life, it does consistently - but unpredictably- ruin my plans, force me to adapt, messes up by thought processes, plays havoc with my memory, makes even basic communication a challenge at the best of times and impossible at the worst, changes my temperament, mucks up my hormones, my emotional stability and my physical strength, destroys my stamina and causes severe pain and physical malfunction in every system in my body. Because it is a complex, multi-system, neuro-immune illness that ultimately means my brain and central nervous system cannot properly communicate with or control my body. My muscles cannot process oxygen into power like yours do. My brain has a faulty thermostat. My immune system attacks itself from the inside because it has no 'off' switch.
It doesn't have a fancy name or a clinical test, and it doesn't yet have a cure or even an effective treatment.
And it might break my body, and fool my mind, but it won't break my heart, or my spirit.
What will break me, is how you choose to adapt to it. Or not. Because the thing is, it is really, REALLY hard work to live with.
Not just for me [and the c250,000 other sufferers in the UK and many more MILLIONS worldwide] but for you too. The people in my world. In my life. Because you have to learn how to live with it too.
Only you don't. You don't HAVE to do anything. At all. You can choose. You can leave. You can move on. I will not hold it against you. But if you choose to stay in my life, I ask just one thing of you. Please, please stop expecting me to be superhuman. I'm just one, slightly battered and broken human being, trying to survive in a world that very often feels like it doesn't care at all. And I can't do all the things I used to do anymore. And it is infuriating enough to constantly fall short and have to lower my own expectations of myself, without everyone else doing it too.
If you want to learn how to adapt with me and stay in my life, I am grateful for the true friendship you offer and I will do everything I can to learn and adapt with you. Because I value you and I love sharing life with you.
But if you are one of many people unable or unwilling to demonstrate a little compassion, patience and understanding, then back away. I promise you I will survive without you, and I still hope to see you succeed in your life, but I do not wish ever to hold you back. So be free. 'Unfriend' me. And live your life the way you know I'd be living mine too, if I had the choice.
I did not choose this. But I will do my broken best to make something better of it. And I hope you do the same for yourselves, whether that is with or without me. Never take your health, home, family, friends or lifestyle for granted. You never know when it could all be taken away in an instant. Like mine was.
I will build a new life and a new identity from these ashes. But if you find the new me is no longer the one you liked, I forgive you. Move forward and be happy in your lives. That is all I want, for all of you.