You know you’ve had M.E for too long when . . .

So it’s that time of year again, M.E Awareness Day. I don’t really like talking about my illness, but I want people to know that it is real, we do suffer from it and it does alter your life. This year though I’ve decided not to do something that is really depressing (but true) but not something that makes people think it’s not as bad as it is.

I was talking with my mum about what to say this year and we got thinking about things that happen when you’ve been ill for so long you don’t remember what it’s like to be “normal”. Here are a few things we thought of:

You know you’ve had M.E for too long when:

– You wonder how people eat their food without needing a tube/assistance/planning around tablets.
– You hear that one of your “normal” friends has done something like go out for a meal/a party or something and you wonder “Did they need to rest before or after it?”
– You think about a “normal” person getting up, showered dress, eaten breakfast and on the journey to work or school all in the morning.
– You wonder how people keep on top of their hygiene nearly every day without needing help or careful planning.
– You wonder how tired people get if they spend all day out somewhere, then do it all again the next day.
– Even the thought of what a “normal” person does in their day/week/month/year tires you out.
– What some people do in a day or week is what would happen to you over a few months or several years.

It’s hard to make an illness light-hearted while still trying to give information about it but this certainly happens to me. I can’t look on Facebook or Twitter and see what people are up to without thinking how wearing it must be on them. I don’t really remember what it’s like to not feel exhausted after a simple activity, I don’t think I ever have to be honest.

But as my mum said, M.E does not define who I am. It just stops me from what I love to do. Sure I probably won’t be able to be in a play or a musical or a dance recital or be in the orchestra but that won’t stop me from trying.

I have tickets to go to a big rock festival called Download next month. I think there are usually around 80,000 people there with very loud music, pyrotechnics and everything else that is associated with Iron Maiden and Rammstein. I’m not sure how I’m going to manage the journey there, but I do know I will enjoy it. I may have earplugs in, I may have sunglasses on, I may be on the disabled platform in a wheelchair but I wantย to enjoy something for once. I know that I will be extremely exhausted afterwards, maybe for the week, maybe for the months to come but at least I will have achieved a dream of going to a festival with my parents and seeing two bands I love the most. I am super worried about it all but I’ve just got to go with it. I don’t know how I’ll be next year, and I’m happy to take the risk of being poorly afterwards. Some people might disagree with that but how often do you have the chance of seeing Iron Maiden and Rammstein? These are only the headlining acts on Saturday on Sunday. These will be the two bands I see (well, maybe the people playing before them but I won’t pay attention to them) out of the many bands there. I’d love to see Black Stone Cherry, Heaven’sย Basement and others but I know that I’m lucky enough to see the two I am seeing. It will be worth whatever payback I get from it. ๐Ÿ™‚

I hope this was good enough for awareness day, I didn’t want it to be depressing but I wanted it to be informative. We have a daily struggle with the simplest of tasks but that sure as hell doesn’t stop us from being ourselves.

I leave you with a wonderful video from my friend Poppy.
Jess x

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11 thoughts on “You know you’ve had M.E for too long when . . .

  1. Hi Jess, I met your mum last month in Uttoxeter, and I saw her tweet about this. My ex-flatmate used to go to Download every year through the disabled access, and he said it gave you much better access to the bands than the regular access, plus the accommodation areas etc aren’t a million miles from the stages like everyone else’s is. Hope you have fun ๐Ÿ™‚

  2. Such a great post Jess, honest and informative. I know it will have cost you to go into the details. We are SO very proud of you, our beautiful, brave, feisty, empathetic, funny and totally loveable Granddaughter. God Bless you. Xxxxxxx

  3. Well done you – and I am completely jealous of your festival trip (I would pay lots of money to be sat on the platform!).
    Keep smiling, and keep your mum on her toes; could you distract her whilst I ‘borrow’ her new sewing machine? xxx

    • Hehe thank you! ๐Ÿ˜€ I will, I certainly have the past couple of days with a bug! I don’t think it’s the best thing that could have happened but ah well! Ooh I shall try ๐Ÿ™‚ xxx

  4. Pingback: That time of year | Rose Vampire

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