30 Things About My Invisible Illness You May Not Know
I completed my Meme last year and wanted to do it again to see how things had changed and how I feel about my condition now, so here goes...
1. The illness I live with is: just Fibromyalgia, but honestly that is enough. I do have other things wrong with me: hypothyroidism; IBS; Endometriosis; and a recent CT scan has shown a small benign lump in the lining of my brain. However I am sick and tired of feeling like I have to justify my life by reeling off a list because people don't understand - that is there problem, not mine.
2. I was diagnosed with it in the year: formal diagnosis in 2008, but I've had Fibromyalgia, in a milder form, a lot longer than that
3. But I had symptoms since: My Mum, who also has Fibromyalgia, say she looks back and can see it in me from junior school. I just don't know anymore. My fibromyalgia is now like a big black, all encompassing blanket, making it hard for me to look back or forward; in fact hard just to deal with today.
4. The biggest adjustment I’ve had to make is: Last year it was stopping, because I had previously been such an active person. However now it's actually getting moving. I'm so tired all the time, but at the same time can't sleep properly, I just feel like a large slug. Life has gone into slow motion and my brain has decided it no longer wants to work. Combine that with the pain, constant headaches, dizziness, and much more, and basically life has come to a standstill where just keeping me and the house up to scratch is a constant nightmare. I hate being so slow, especially my mind. I am an intelligent person, but now come across as a slurring, stuttering fool - it's very embarrassing and has made me even more reclusive. So thankful for email and the internet, because I refuse to make phone calls anymore.
5. Most people assume: I'm just lazy. I have a high IQ, am articulate, and intelligent, so (when feeling up to it) can argue my own corner. This makes people think there is nothing wrong with me and I'm just a scammer.
6. The hardest part about mornings are: Mornings? What are they? I rarely get going until mid-afternoon and then hate myself for wasting yet another day.
7. My favorite medical TV show is: Casualty and Holby City (UK). Although I do love House when I am able to concentrate, and have found my medical knowledge has come to such a point I can often work things out before House does.
8. A gadget I couldn’t live without is: My computer. I have a lot of bit and bobs to help me round the home, but without my computer I have no life basically. It is my window on the world, it is my memory, it is my brain, it is my social life, it is entertainment, it is my world - well apart from my cat lol
9. The hardest part about nights are: Sleeping. Nights can be so long and depressing. I have moved now, so no longer have my horrible neighbour complaining at every move I make. Although it's taking a long time to get over what he put me through and I still creep about to a certain extent. Even though I am able to get up and do things now, I still feel tired so I can't do a lot.
10. Each day I take __ pills & vitamins. (No comments, please) 10 ish and a patch
11. Regarding alternative treatments I: I gave up with alternative treatment a long time back. I found there were things that helped a little, but needed to be continuous (ie aqua therapy at least once a week, myofascial massage weekly) and I just couldn't afford that kind out outlay. Besides being on benefits puts me in a catch-22 situation; a vicious circle. If I was to pay for alternative treatment myself and feel a bit better, the government would then taken my benefits away and I'd be back to square one. I would have to work, I would not have the time for treatments (or would just be off benefits and have no money for treatments), I'd get worse again, I'd lose my job, I'd have to claim benefits. Been there, done that, and NOT doing it again.
12. If I had to choose between an invisible illness or visible I would choose: Visible. Unless it was cancer. In a grim way I often have thought I'd rather have cancer because at least people have a sympathetic view/knowledge of it and it has a kill or cure ending - you know where you are more so than I do now.
13. Regarding working and career: None. All gone. In a past life I seem to remember being career oriented (hence no kids), but that's long gone. Work now scares the life out of me. It's hard enough to justify myself to friends and family, so how on earth would I do that with an employer. Stress levels would be sky high as I felt compelled to push myself to do things I cannot.
14. People would be surprised to know: I do miss life. I would like to be invited out, even if I can't always go.
15. The hardest thing to accept about my new reality has been: Other people. I think I am now finally in a stage of acceptance. However others never cease to amaze me with how they react.
16. Something I never thought I could do with my illness that I did was: Still haven't found anything :(
17. The commercials about my illness: Pass
18. Something I really miss doing since I was diagnosed is: Going out and enjoying myself. I rarely leave the house now, and if I do it's such an effort I just feel crabby.
19. It was really hard to have to give up: Life
20. A new hobby I have taken up since my diagnosis is: I have just taken up colouring (adult colouring books). I do find it relaxing, but can only do little bits at a time because of the pain and concentration required. All too often I will push myself to finish a bit and then regret it.
21. If I could have one day of feeling normal again I would: OMG! I don't know where I'd start. I used to have the occasional 'better' day, but at the moment I have been in the depth of a flare that started just after Christmas (2014), so can't remember what it's like to feel good. If it was just the one day and I knew when it was (so I could plan in advance) I'd make it special and go somewhere I'd remember for a good while after. I'm thinking the new Star Wars exhibition at Madame Tussauds or Port Lympne Wild Animal Park and Safari Park Experience.
22. My illness has taught me: Not to rely or trust others (apart from family), what a bunch of utterly incompetent liars the government is and that the NHS isn't as glorious as it is made out to be.
23. Want to know a secret? One thing people say that gets under my skin is: But you look fine.
24. But I love it when people: Help without having to ask.
25. My favorite motto, scripture, quote that gets me through tough times is: 'Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community' -Aneurin Bevan, Founder of the NHS. In other words, I deserve the benefits I get and people can keep their opinions about lazy scammer to themselves.
26. When someone is diagnosed I’d like to tell them: I'd rather not because it's a bleak world they are entering and I don't want to give them any false hope.
27. Something that has surprised me about living with an illness is: How horrible some people can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Recently my Dad has done so much for me I have been overwhelmed. He's in his 70s and doesn't find it easy either, but his help with moving, getting the new place sorted, making calls for me and so much more, has left me indebted. To think, 20 years ago we really didn't get one well, now I can't (don't want to) imagine a world without him.
29. I’m involved with Invisible Illness Week because: It's a time I feel I matter and am with other who are (so unfortunately) going through the same kind of experience as me. The great thing is it's not just a week now, because there are so many coming together on the FB group year round - somewhere I can always let of steam and there is always someone saying 'yes, that's me too'.
30. The fact that you read this list makes me feel: Less alone and thankful you have taken the time.
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