I honestly don’t want to scare anyone by writing this because people recover or experience M.E/CFS at their own pace. My story isn’t a tale of doom for you all but also there is a part of me that’s saying “YAY YOU DID IT!! How I don’t know but YOU DID IT” So many times I found the battle so difficult I didn’t know how I was going to keep going. My Ten Year Anniversary was actually in January and I just couldn’t talk about it in the post-Christmas slump.
Once I had been ill for a few years, I saw the future as one giant black hole. Whilst I don’t think of the future too much (Read -ever) I feel like I have a better grasp on life with M.E although ask me that in another ten years. I can’t say that its anniversary I’m happy about and of course the future still scares me enormously, hugely even. Who knows what will happen and I hope one day that life might be different but that’s not in my control.
I wanted to pass on my findings as a freebie for you, learn from my trial and error.
1. Life is short and it’s changing all the time even if you feel like you are on pause. We have to squeeze all we can out of the now and what we have. It goes by fast and a split second is all it takes for life to change forever.
2. Never stop being thankful. It’s really really hard to be thankful when you can’t sit up or move, I’ve been there and I don’t remember that much in all honesty but I remember being so thankful for my family, so thankful for the NHS and so grateful that smoothies existed. It is so easy to focus on what you don’t have or what you want or how much of a disappointment life can be that you become bitter. Never let that darkness linger and always remember what you are grateful for.
3. Asking for help is a sign of strength, not weakness. I was such an independent, stubborn, type A personality, when I got really sick it was so hard to say I can’t do that. Usually, it ended up with me in tears and people getting annoyed that I wouldn’t let them help and then I crashed and burned massively. I don’t relish being so reliant on people but I know when to say I can’t do that or I need some extra help with that.
4. You don’t ever get used to it, you never get used to the world of forms grab rails and trying to pretend you are ok when you aren’t. My brain still thinks I can do all these wonderful things and that is pretty far from the truth. I haven’t ever got used to the world I live in but I have got better at accepting it. M.E has been a gift and a curse and the balance is delicate to how I perceive it at any given time. M.E has
5. People may disappear and that’s okay because you wouldn’t have had a healthy relationship post-diagnosis. Some people I’ve spoken to have had great friends and have had loads of support. Some like me got ill young and freaked out the ‘invincible’ vibe of teens and tweens. I lost everyone who wasn’t related to me by blood and I did have some distancing of family. There are a few ways to look at this; we don’t teach in our schools about disability and how many people at some point in their lives deal with it. Whether it’s permanent or not. How can we expect people to process it? There is the “they weren’t good friends then and you can spend your energy elsewhere” or you can think “Boy this sucks, my life has already turned upside down and now I am even more lonely than before” All are valid and you might go through them all, you can find people with the same condition via charities or good old Instagram, find your people. Online friends can be easier depending on how much you can get out and spend energy on external things.
6. You aren’t the same. This one might be personal but I used to hanker for the Pre M.E Me the one who hated sports could do maths and absorbed books a few times a day sometimes. I miss her truly but I’m not the same, not only has ten years passed and a learning curve happened but I like to think I am a better person directly because of the battles and prejudice I have faced. A lot of my personality is dimmed because of brain fog and fatigue – you can be quite zombie-like. You are still you just a slower quieter, better version of you.
7. Even if you are entitled to something it doesn’t mean you get it or it’s easy to set up. That sounds almost ridiculous but a lot of schemes or help for people who are ill or living with disabilities are set up to put you off applying. There are many hoops to jump through and it won’t be easy. But don’t be put off because you are entitled to it and you should be able to access what is there to help make your life easier. You need to be your own advocate because not many people will stand up for you.
8. Try not to live in a bubble. When you are so ill you need a lot of help you can become the sun in the solar system. Everyone around you has to revolve around you. Ask the other planets about their day or what’s going on in their lives? Reach out and keep up with what is happening in the world and know not everything will revolve around you it’s not healthy. Plus everyone in the solar system is going through this with you. They might not feel the sensations but they have to watch and keep you alive and fighting.
9. Remember to look after yourself and not just medication and sleep. Treat yourself with kindness, know your boundaries and stick to them. Don’t say “yes” when you should say “no.” Find the joy in your life and try to relax and do the things that make you feel more human. Enjoy the little things. Work out what you want from life and what can be done with your limitations.
10. Your body changes and you might not like it. I am squidgier and softer than I was. On occasion, my hair has fallen out due to stress and medication. I have gained weight gone up a dress size and no have more spots and sensitive skin than I did as a teen. I hated my body for a long time for betraying me it felt like every time a doctor told me “Your joints are fine your body is making a pain signal that isn’t really there.” Or “the results came back clear – must be a new M.E/CFS symptom.” It is hard to love a body that is so broken sometimes. But it’s beautiful and it keeps you on this planet. It might not work as you like it to, but you’re breathing and living. That’s something not to be taken for granted.
11. I was about to publish this and wanted to add this last one in. Be unashamedly YOU. Don’t try to be someone else and don’t let others change you because you feel happy to have people around you. Be the person you want to be and work towards being the person you have to be for your future. If you can be yourself, your whole self then you are more than enough in anyone’s standards and if you aren’t then they aren’t the right people to leave a positive impact in your life. It’s also okay to be sad about the future you thought you’d have, or the person you thought you’d be. It is a form of grief in some way because life is so different.
I never thought I would end up here, a wheelchair user someone who can’t do what they want to do but I’m lucky in so many ways. Without M.E I think it’s unlikely I would’ve met Baloo. My family and I are so much closer and I am more of an open book than I used to be. Life goes on whether you like the direction it’s taken you or not. Try to make the best of what you have and savour the good in life.
Life goes on and you can decide to a certain extent how much you go along with it.
What have you learnt from illness or disability?