What Are The Best Gifts People With ME Can Give to Themselves? Part 1 — Material Stuff.
So as part of my fundraiser journey I asked people with ME: what is the best gift they have given themselves?
And boy, I got a lot of responses!
In fact, so many that this post is gonna have to be a two-parter.
Here’s part one: The Material Stuff.
For fun…
Making time for fun can be challenging for people with ME, especially when some of the things they love to do drain their energy. So here are a few ways that people balance fun with rest. (Not gonna lie — I’m very tempted to get myself some ‘lazy reading glasses’.)
Ilse — lazy reading glasses
Dwayne — a subscription to audible.com fills the hours with imaginative escape
Mitchell — a new motorbike when I got my pension. I’m not well enough to ride it often but on the days I do it’s wonderful therapy.
Lizzy — I subscribe to Amazon Books unlimited and to Ready the magazine subscription app. For less than £20 I have all the books and magazines that I could want to read.
For relaxation/homemaking…
Of course, many responses were all about relaxation — people with ME know how to make it a priority! I particularly like the way people make their bedrooms into little havens (I think many people could learn a trick or two from this list!)
Helen — A bungalow! With front and back garden and surrounded by fields and hills and trees and nature. Watching the deer from my bed.
Keith — A holiday on my own away from judging people… can please myself… rest when I need to, paint when I’m able to…
Linna — Jacuzzi!
Bill — blackout curtains
Marilyn — electric bed and recliner
Joy — a sleep number bed, and a thick terry cloth robe to wrap up in after showering. I’m going to ask for a dyson hair dryer for Christmas.
Laura — paints so I can change my surroundings. Decorating is my happy place.
Auressee — a new — very expensive bed. I used the very last of my savings.
Lynn — I had my whole bedroom redone. I was sick of staring at 4 blank walls. We had just moved in our new house when I got sick and every room we had decorated but our bedroom so I was stuck in that 4 walled bedroom for 2 years. Now it’s my dream bedroom. Very inviting.
Emily — Essential oils and massage
Marie — Having all of my bedroom walls painted orange (this was actually done as a gift to me) Orange is my favourite colour, and I spend so much time in my bed/bedroom, that having it painted in an enjoyable colour cheers things up for me a lot.
Gillian — I recently bought a new very comfy mattress. Wonderful. Next I’d like to get a nice comfy recliner chair. Still looking.
the_girlwithm.e When I was bed-bound I was in my pyjamas a lot and I really did like when I got a new pair of pyjamas it made me feel new and also cosy as my body temperature was terrible.
For outdoors…
The ‘Millions Missing’ campaign is named so for a reason. 25% of people with ME are home-bound or bed-bound. I know from outings with my sister in law that going outside usually means playing the game of ‘how can we get there in the fewest steps possible?’. These are the gifts people with ME have given themselves to retain their freedom outdoors.
Steph — an electric bike, it has given me back my independence.
Debbie — 2 sheets of plywood to build my microcamper so I can still go places without being afraid I crash somewhere where I can’t crash.
Lorenzo — Electric scooter and a crossover SUV for travel.
Jayne — my offroad mobility scooter.
Sallie — electric wheelchair.
Alicia — We just bought a newer vehicle with seats that don’t put pressure on my hips and also have adjustable back support. It makes the long drive to my Dr appointments much more tolerable.
Hattie — My mobility scooter and heated coat. Together, they have opened up the world to me again and meant I can stay toasty while I explore.
To make life that little bit easier…
If anyone knows about self care — it’s people with ME! ‘Treat yourself’ often takes on a whole new meaning. Here are the gifts that keep on giving:
thesaltpacket Toni Bernhardt’s books how to be sick and living well with chronic illness! Changed my whole frame on life.
Alison — an automatic tea maker.
Sarah — from a practical standpoint, I hired someone to do some of the basic house cleaning once a month (though I could use it more often) Enables me to put my precious energy into other things.
Tamesin — I have someone drive me to medical appointments. I couldn’t drive more than a mile anyway, so I wouldn’t have been able to drive myself to all my doctors without help anyway. But I’ve hired people to drive me there and back and stay with me. It makes so much difference.
Rebecca: All my disability aids. I love every one of them. I’d like a lot more people to feel comfortable about using a wheelchair if they need one, that would probably make the biggest difference in terms of quality of life for a lot of people. Also stuff like memory foam cushions, wearing sunglasses even when it’s cloudy, having a chair to sit on in the bathroom etc.
And… babies?
Ok — so realistically not everyone who has ME will benefit from having a baby. And maybe including babies on a list of ‘material items’ is a liiiiitle bit strange. But several respondents said a baby was the best gift they had given themselves, and Nicole explains why:
Nicole — I was so ill for years with ME stuck in the bed and then I got pregnant and it’s changed something… I can do things now energy wise that I couldn’t do this time last year. So the best gift and thing I’ve ever done is have the courage to try for a baby and then bring my baby boy into the world. I’ve never been so happy or fulfilled in my entire life. I still have to manage my energy and I can’t work (tried part time again and it was a disaster) but I can mind my baby boy and rest in between everything with great family support too I might add.
Watch this space for Part Two— The Emotional Stuff.
And if YOU want to give people with ME a gift this Christmas, please consider donating to my fundraiser. Thank you!
