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 :)