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Wednesday, 10 September 2014

Invisible Illness Week 2014: Just One


Another year, another invisible illness week & another invisible illness week post. Invisible illness week is one of my favourite awareness weeks, probably because it is so inclusive. This year's theme is all about that. I may be only one invisibly ill person but I am one of millions, 10s of millions, hundreds of millions even.
It seems insane when you think about it in the abstract, but that's the problem with invisible illnesses; they are invisible. But when I think about the people who live in my house we basically all have invisible illnesses; my mum has migraines, my brother has asthma & dermographia & my foster brother has all kinds of psychological developmental issues & seems to be developing Anorexia athletica. And I have M.E. which would be invisible if I didn't have to use a wheelchair.

Anyway, I thought I'd do the invisible illness week tag '30 things about my invisible illness you may not know' this year as I'm not really sure I'm up to doing an emotional post that I would have to put a lot of work into. I'm still recovering from being out of commission, but if you're interested in seeing a post like that here is the link to last years post.

Anyway on with the tag......

1. The illness I live with is: Myalgic Encephalomyelitis

2. I was diagnosed with it in the year: 2011 (I think)

3. But I had symptoms since: 2010 as far as I can tell but it may have been 2009

4. The biggest adjustment I’ve had to make is: Everything.

I've had to give up on academics, walking, reading, going places by myself...normality.....

5. Most people assume: that M.E. is short term & if I tried harder I would have recovered

6. The hardest part about mornings: trying to sit up, trying to remember how to get out of bed & get dressed....

7. My favourite medical TV show is: Scrubs I guess, I like that they always diagnose people & take them seriously. I don't watch any others though :)

8. A gadget I couldn’t live without is: My electric wheelchair ^^

9. The hardest part about nights are: the pain, my pain gets a lot worse as the day goes on

10. Each day I take __ pills & vitamins. (No comments, please) probably 18-19 (+ upto 15 more) pills a day. They're largely vitamins but that's how many I take a day.

11. Regarding alternative treatments I have tried acupuncture  (which is awesome for pain) but other than that I know that as soon as I start some of my relatives will expect me to be recovered so I don't try. I can feel my body & I know that it's damaged enough that even if I 'recovered' right this second my body would still be damaged,

12. If I had to choose between an invisible illness or visible I would choose: I think my illness is both, it is invisible but I use a wheelchair which makes most people aware that I am ill. I wish doctors could see that I'm ill though ^^

13. Regarding working and career: I do this......I'm literally too ill to do any normal kind of work.

14. People would be surprised to know: how ill I am. People always seem to think that I'm more able than I am. I always seem to think I'm more able than I am but I am very ill. Not as ill as many M.E. sufferers become but I am degenerating so I know that is to come....

15. The hardest thing to accept about my new reality has been: the loss of independence, the loss of any capacity to help people, the loss of my ability to do anything meaningful

16. Something I never thought I could do with my illness that I did was: going to IMATs, I've been twice now & although it was exponentially more difficult this year it was still worth it & a huge achievement

17. The commercials about my illness: don't exist

18. Something I really miss doing since I was diagnosed is: walking, reading, studying, dancing, ice-skating & being helpful.

19. It was really hard to have to give up: my academic future

20. A new hobby I have taken up since my diagnosis is: blogging ^^

21. If I could have one day of feeling normal again I would: get on a train to Paris & spend the whole day wondering around with my camera, buying food & enjoying myself....or on a bus up to pickering & wander around the moors with my camera all day ^^
I'd have to have been given warning though, there is no way I would have trusted feeling 'normal' for a day, I'd just assume it was an incredibly good day....

22. My illness has taught me: things should be done whilst you can do them, not at some random point in the future

23. Want to know a secret? One thing people say that gets under my skin is: "well you're looking better"

24. But I love it when people: check up on me when they haven't heard from me in a while

25. My favourite motto, scripture, quote that gets me through tough times is: I like to play Pollyanna's 'Glad Game', there is something to be thankful for in any situation. Plus, I'm incapable of doing nothing. That helps a lot.

26. When someone is diagnosed I’d like to tell them: Research is your only defence, do not let the doctors bully you with lies & bull-shit.

27. Something that has surprised me about living with an illness is: how quickly the family & friends who aren't really interested in you get bored of your illness. People quickly get sick of dealing with an illness that is hard & painful & doesn't go away.

28. The nicest thing someone did for me when I wasn’t feeling well was: check up on me. It always makes me cry when people check up on me ^^

29. I’m involved with Invisible Illness Week because: it is incredibly important for people to be made aware of the illnesses we can't see & that aren't advertised on tv. These are the ones that often have a number of unhelpful & potentially dangerous misconceptions. Therefore they needed support & advocacy events like Invisible Illness Week

30. The fact that you read this list makes me feel: squishy inside & slightly embarrassed, why do you people read the gibberish I write? Seriously!

P.S. the second picture is from Friday's ootd post btw if you want to look out for it :)

8 comments:

  1. To start with, I can't believe the person above just commented on your hair... (It does look gorgeous but still...). People.

    I wholeheartedly believe you have not lost the ability to do something meaningful! That made me sad to read, but I get why you would feel that way, but I don't believe it at all.
    For one thing, I think you're a funny, beautiful and quite lovely lady that makes me smile and is a pleasure for me to get to know over this here internet.
    I think the people in your life will disagree with that, and just your presence in their life is meaningful.
    No life is without meaning, especially not the life of a wonderful person like yourself!

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    1. I think sometimes people really struggle with knowing what to say on posts like this & my hair is awesome lol ^^

      I'm really touched ^^ I guess I know objectively that that just being a part of so many people's lives is meaningful & does make a difference but I guess I've never gotten over the person I used to be & the life I used to think I'd have. I always had my mind set on all the big things I was going to so I guess all the smaller - but just as important - things I do now just don't seem to stack up in comparison...

      Sally xxx

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    2. I read this comment earlier and have come back!... It's always so easy to long for what could have been! You are one of the best M.E. bloggers I know and are quite popular now. I know that you are brining hope to a lot of people who are too ill eve to blog. You definitely inspire me to keep going and take better photos etc. I bet you have far more of an impact on others than you realise! x

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    3. I know what you mean... usually I sometimes say that I can't think of something and then make a nice comment. I didn't mean it in a harsh way.
      I can\t really imagine how that must feel. Having to constantly change where you want life to be, but as long as your have your happiness in the end, that's a good thing. Damn our brains, why can we not just turn of the desire to compare everything... stupid brains.

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  2. I also have M.E and I think it's great that you're creating so much awareness for it! x

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  3. Thank you for this honest life list, my dear friend!!! YES I DID READ ALL THE WAY THROUGH :) and I had two reasons for doing so: The first one, and the most important one, is - you are my dear online friend <3 The second is the thought I had this morning ... my beloved Dad used to say, "Ok ... let's get the show on the road!" and that old Broadway thing about how the show must go on ... and mornings like today when I'm feeling poorly, I sit here and I moan into my coffee, "The theater is dark today, Dad," and I go back to bed (so this is my second morning - at 3.30 in the afternoon, yes...) ... and even tho I have been dealing with such days for many, many, MANY years now - its when I have a huge list of things that MUST be done and I feel pressured (not that my Dad would pressure me! he would do it for me! but since he's gone, I do have people who help me here and there, surely - but not like Dad!) -- when I have a HUGE list and I say, "I can't. I'm ill. The theater is dark today!" and I go back to bed ... I really feel invisible. And so by reading your blog, and reading your list, my dear friend, I don't feel so alone now ... thank you, and bless you!

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