I missed ME Awareness day last week (12th May) but it’s still ME Awareness month. I’ve seen loads of amazing posts and fundraising schemes over the past couple of weeks and I feel a bit bad that I never really do anything so I thought I would chime in with my 2 pennies worth.
I’ve been sick with ME (Myalgic Encephalomyelitis) for just over 7 years now. The last 3 or 4 of which I have been mostly bedbound. What does mostly bedbound even mean? I hear you say. Well, for me, I have to spend most of my time lying down or propped up in bed. I can get to the bathroom by myself but I live in the upstairs of my house as I can’t handle the stairs. It’s different for everyone though as there is a severity scale and even people who are at about the same level on the severity scale have different symptoms/ ways the illness affects them.
I’m going to do two posts for this. Next week will be some of the things that I would do if I got well tomorrow but for now I want to share with you some of the things I struggle with not being able to do a bit more in the day to day of living with this illness. One for each full year I have lived with it.
7 Things That I Wish I Could Do:
- To be able to get dressed everyday, or even a once a week. I live in pyjamas most of the time and I need help when changing clothes. Most of the clothes that I have now are just loads of pyjamas. They’re comfortable but every now and then I would love to be able to wear normal clothes too.
- Being able to stand up when I have a shower. Lots of people with ME use aids such as shower chairs or stools to be able to use the shower. For me, we have a shower over bath and to have a shower I have to sit down in the bath, then lie down between things (shampoo, rinse, etc.) to rest.
- Being able to have long hair. This links to the previous point. I have had to chop most of my hair off as even with how short it is now (and I cut it very short) I don’t have the energy to wash it anywhere near as frequently as I would like. And that’s without the added energy sappers of having to dry or even brush your hair.
- The ability to go on the computer whenever I need to do something. This applies to most things as we have to plan for pretty much everything we do. But most people, when they think “oh, I need to do something on my computer” don’t have to add it to a list called; Laptop To Do and then wait for that one day a week where I have planned everything to have the energy to be able to go on and do it.
- Being able to get to the kitchen so I can get food or drink when I need it. As I mentioned briefly at the start, I’m stuck upstairs. My parents act as my carers, they have to cook and bring all my meals to me in bed. If I need anything during the day then I call them on the phone. On the odd days where no one is home (they both have full time jobs on top of caring duty) then I have a mini fridge upstairs on a desk (as I can’t bend down to get things too low) with something for lunch and any drinks I need (such as pre-opened bottles of water as I struggle opening them myself). Being able to just wander into the kitchen whenever I’m hungry would be pretty cool.
- Similar to getting to the kitchen, I would love to be able to get to the front door. On those days where no one is here and the door bell rings I just have to lie there. It’s very frustrating, especially on the occasions where I know its something that I have ordered online. It’s for me, it’s at the door but there isn’t anything I can do about it and I have to wait while they leave and bring the parcel to the post office so someone has to pick it up for me.
- Last but definitely not least, simply having something to say when old friends from school, or people you don’t talk to often, ask you what you’ve been up to. This normally comes up pretty soon in any conversation with someone you haven’t spoken to in a while (or even years) and you just don’t have anything to say. What have I been doing for the last few years? Oh, you know, lying here…. the conversation normally dies a quick death pretty soon after this, as you simply don’t have anything to say. It means that most of the people you end up talking to are sick too, as you don’t have this problem with them (which is great) but it also means you fall out of touch with family and friends a lot which makes the small world of living upstairs even smaller.
If you have any questions don’t hesitate to ask, it’s what awareness posts are for and feel free to share it as much as you like. Or if you have ME too, are there any things that you would add/change?