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[personal profile] phantoms_siren


Found this on Glass of Win, a quality blog, I heartily recommend it.

1. The illness I live with is: Lupus, Fibromyalgia, Reynauds, (possibly IBS)
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: going part-time at work, I only work 23 hours a week now, a big change from the 40 I was working before. It took a lot to admit that I weasn't able to manage what everyone else could do any more. I've yet to take the financial hit from the change but I think my health is worth more than the money.
5. Most people assume: I can do just one more thing. Sitting is just as tiring for me as standing, so sitting in a pub for another 6 hours is not necessarily an easier option.
6. The hardest part about mornings are: standing up and walking across the room for the first time. My joints are always out of position or stiff making coordination a struggle.
7. My favorite medical TV show is: House is my favorite by far, the work they've done to raise the profile of lupus is invaluable.
8. A gadget I couldn’t live without is: My BlackBerry, if I'm too tired to sit up I can still access the internet, I can keep all my medical appointments and info in one handy place and I can google medication info wherever I need it.
9. The hardest part about nights are: getting to sleep. I have the most energy late in the evening. My natural sleeping time is 4am to midday but I have to go to work at 6am so I try to force myself to go to sleep at 11pm. Laying down causes more pain so its hard to relax and let go of everything.
10. Each day I take 8 pills & vitamins.
11. Regarding alternative treatments I: adore yoga but I've never tried anything else. I keep an open mind but I'm wary of the obvious frauds and placebos.
12. If I had to choose between an invisible illness or visible I would choose: Neither. Visible illnesses have all their own problems, I'd prefer something treatable or understood in either camp over the wishywashy diagnosis I have right now.
13. Regarding working and career: I already mentioned going part-time. Ultimately I want to work for myself, creating art, preferably in a way that lets me stay in bed when I need it.
14. People would be surprised to know: that I still think the way I did before I got sick. I still want to do the things I've always wanted to do. I don't *want* to stay home and be boring.
15. The hardest thing to accept about my new reality has been: Planning for the future and knowing that there will never be a time when I feel any better.
16. Something I never thought I could do with my illness that I did was: be able and well enough to create art that could get into a gallery.
17. The commercials about my illness: don't exist.
18. Something I really miss doing since I was diagnosed is: Touring. I used to follow bands and enjoy concerts night after night despite traveling hundreds of miles during the daytime. Now I'm lucky to sit through a whole concert whilst feeling miserable, enjoyment and dancing and extremely rare.
19. It was really hard to have to give up: just getting up and going places. Everything needs weeks of planning now.
20. A new hobby I have taken up since my diagnosis is: Knitting and crochet. I adore knitting, its very relaxing and you get soft warm things out of it.
21. If I could have one day of feeling normal again I would: go to a theme park with my beloved and ride all the rides at least twice, then dance and booze the night away.
22. My illness has taught me: life sucks but there's no point moping cos being miserable doesn't make it any more bearable. You die when you die and there is nothing after, why waste the time inbetween.
23. Want to know a secret? One thing people say that gets under my skin is: "why don't you try random-over-the-counter-meds?" I've tried them all, the pain doesn't go away, the best I can do is make it bearable.
24. But I love it when people: Understand and just let me sit when I need to or meet me for coffee on the rare occasions when I can manage it.
25. My favorite motto, scripture, quote that gets me through tough times is: Build a man a fire, he'll be warm for a night. Set a man on fire and he'll be warm for the rest of his life. Wait... that's not right...
26. When someone is diagnosed I’d like to tell them: don't settle for the crap the doctors will tell you. Don't let them dismiss you. Ask the questions you need answered and if they refuse to answer ask again more louder.
27. Something that has surprised me about living with an illness is: the relentlessness of it all. There is rarely a moment not coloured by the pain.
28. The nicest thing someone did for me when I wasn’t feeling well was: Made rogan josh and chai, and tucked me up on the sofa with ice cream and Labyrinth.
29. I’m involved with Invisible Illness Week because: the more people know about invisible illnesses the better life will be for everyone affected and the fewer lonely people there will be in the world.
30. The fact that you read this list makes me feel: grateful. And hungry :p
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Phantoms Siren

January 2012

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