I find it hard to express just how much this video resonates with me, because I literally feel everything written on those tiny slips of paper, and often struggle to put into words the things which this video says. I'm so grateful to Daisy for all the great work she does raising awareness, because she often says exactly the things I want to but in a way I never could! This part especially -
M.E makes you feel like the world wasn't designed for you
This is so true, and is something I've been thinking about a lot recently. Last week I was at the hospital and as usual, I stopped by the shop there to pick up a few magazines. One of them is a well-known women's mag which I read regularly, usually when I need change and have to break into a fiver/tenner to get it! But I enjoy reading it each time. Only this time, I was reading this magazine and it really struck me just how irrelevant to my life it is. I'll explain.
Most women read these sorts of magazines because you can relate to them, and I have been able relate to them in the past. But when you don't live the life of an average woman because illness is holding you back, you suddenly realise just how different your life is. Let's take a look at the average topics covered in a women's magazine -
Career- well I can't work, as is the reality for many other sick and disabled people. Tips on how to boost your career or make the most of your office hours really don't apply to me. I would love to work, but it's just not possible with my health problems, and so reading about where I should be in my life or how empowering a job can be is only going to get me down.
Fashion and beauty - I like buying clothes, don't get me wrong. But right now my outfit choices are 99% based on what will be comfortable for whatever task I'm doing that day, or more frequently what is the warmest outfit I own so that I don't freeze and end up in even more pain with my joints? Add to the fact that I'm living on pretty much no money at the moment because the benefits system is a joke, then it is very rare I get to spend money on pretty lovely clothes. As for beauty, I barely have the energy to bathe and brush my teeth as it is. I can't spent hours primping and preening and wasting valuable energy on the many stages I should be going through to maintain perfect skin.
Relationships - M.E is a very isolating illness, meaning meeting new people can become difficult, and most of your time is spent alone or with family. I know plenty of people with M.E who are in relationships and so this isn't a blanket thing, more a personal one. But relationships for me have to come pretty low down the list of daily worries.
Fitness and exercise - I've actually become a lot more body conscious since getting ill, but there is really very little I can do about it. I cannot exercise, I can't join a gym or go jogging or swimming or whatever else they're advising. I really wish I could.
So I sit there thinking to myself, when did women's magazines become escapism? Surely they're designed to be the opposite; to be relevant to every day life.
This is just one example. Another thing I used to struggle with was listening to the radio. Especially stations aimed at a younger audience. I'd listen to shows where people were ringing in, worrying about exam results and uni, thinking "that should be me". People would talk about going out on the weekend, and again that's something I can't do.
Everywhere you hit brick walls where your life doesn't permit you to join in with the rest of the world. From not being in education, to not being able to get into your favourite shop because it doesn't have a disabled ramp and you can't face asking them to go and get the portable one. But we muddle on because we have no choice, this is our life and we're stuck with it.
This is probably a bit rambly and I'm not sure I've gotten across everything in the way I hoped, but I just wanted to get it out there.
Until next time,
Sarah x
