Guest Blog by Laura Brockway.
Here are some of my tips for coping with Severe M.E…
This year marks ten years of M.E for me. With six and a half of those being severe, I wanted to write a little something that might help others cope.
It took a long time and a lot of learning to know that just because I’m severely chronically ill, it doesn’t mean my world has to become clinical and without joy.
1. Experience the outside world from bed.
Ask family and friends to send you photos or little videos of places they’ve been so you get to see the outside world. It will help when you get that caged animal feeling.
2. Use your imagination: you can travel inside your own mind.
I’ve been to the beach, walked into my garden and ran by the river just by using my imagination. Go wherever makes you happiest.
3. Make your space your own.
It’s very easy for a room to start to feel sterile when you have to have a lot of disability aids and medication about, so I think it’s important to try to keep your space as “you” as possible, especially when it’s the only place you ever see.
Whether that’s pretty pictures on the walls, your favourite books lining your shelves or snazzy bedding it’s up to you but make it your own.
For me, this also means keeping as much of the medical stuff out of sight as I can. For example, my mum keeping my catheter supplies in her room, so it’s not piled on my dresser.
4. Audiobooks are a lifesaver for me.
I’ve always been so fascinated by the world and all its stories, so to be able to listen to my favourites quietly on my phone is a miracle.
5. If you can bear it, touch can be such a big comfort.
When you are in constant pain and surrounded by carers or nurses it can begin to feel as if the only human contact you receive is clinical. But we’re still human, and we still need comfort.
Sometimes my Mum holds my hand, or a friend gives me a very gentle squeeze after a visit. Do whatever you can manage or whatever you feel comfortable with.
It’s okay to mourn the life you lost and the life you dreamed of having. I had to grieve for my old life before I could accept and find peace in my new one – and I’m happier for it.
7. Find ways to keep enjoying your passions.
For me, this means Mum reading articles from my favourite vegan magazine, looking up new exciting recipes for Mum to try, watching YouTube videos about sustainability and the environment, and listening to Audiobooks about combating racism, about feminism and sociology.
8. Sing your favourite songs in your head.
Or, if you can manage it, you could make a playlist of your favourite songs that you can go to when you feel able to listen.
9. Find pen pals.
I have found such comfort in sending and receiving little cards in the post. I have so many friends with M.E that I’ve met through the internet and it makes me happy to know I might be making them smile on a bad day. My Mum writes the cards for me which means I’m able to keep in contact with friends.
10. Take photos of the good times.
If you do manage to do something, even if it’s a tiny something, take photos and keep them close by. I find it helps to know that there can be good times, even if I’m in the midst of a bad time.
11. Wear jewellery and/or makeup or put on nice pyjamas.
Who says we can’t wear nice things if we’re in bed? I’ve even known people to put on their fanciest clothes for a bit, just to make themselves feel special. Just because we’re ill, it doesn’t mean we can’t make ourselves feel nice if we want to.
12. Let people know how you’re feeling.
It’s up to you how you do this, some people just talk, others put it in a text, some use signs and others use coloured/symbol cards. Just don’t do it alone if you don’t have to.
13. Don’t compare yourself to others.
This is easier said than done when it feels like the world is spinning without you but know that everyone is on their own path and comparison really is the thief of joy. You do you.
14. If you’re able to, explore taste.
Try different foods or drinks. Find what flavours you enjoy and savour every second. Also, eat what you fancy. Sometimes you’re way too exhausted to get through a meal so make the most of any cravings you might get.
15. Weight it up.
If you’d rather spend time with the people you love instead of using every last drop of energy to have a shower, do it.
I have bed baths for this very reason, because at the moment a shower would take everything I have and leave nothing for something that might make me smile.
It might be a different scenario for you, but if you’re struggling with the energy balancing act of “do I do this or that?” my suggestion is to do what will make you happiest.
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.
ME Association Registered Charity Number 801279