They have, however, given me some time to catch up with some blog-reading I have been neglecting.The first post is from the Invisible Illness Week Website which encouraged people with Invisible Illnesses to share the following thirty things about their invisible illness. It seemed easy enough - but some of my answers came a little easier than others.
Things About My Invisible Illness You May Not Know
1. The illness I live with is: Rheumatoid Arthritis, with added elements of PMR, migraines, atopy and Sjögrens.
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: 1996 (though it is only now with the benefit of hindsight that I can see that. The big warning signs with the flashing neon lights didn’t show up until about 3 months before I sought medical advice).
4. The biggest adjustment I’ve had to make is: Acknowledging that the girl who once burned the candle at both ends is now a woman who needs her rest!
5. Most people assume: That I am not in pain because I have got up, dressed up and showed up.
6. The hardest part about mornings is: The realisation that I have about 16 hours before I can rest again – and I probably haven’t got enough rest banked to cope.
7. My favourite medical TV show is: Grey’s Anatomy – mostly because it is so unlike the hospital where I work!
8. A gadget I couldn’t live without is: My Bic XXL pen. Despite the computerisation of our world,there are still an awful lot of times you need a pen! That and my OXO Good Grips stuff in the kitchen.
9. The hardest part about nights is: Finding the balance between minimising pain in order to sleep – but not taking so many meds that I am zonked out the next day. Assuming I’m not on prednisolone and therefore staying up all night anyway.
10. Each day I take: Many, many more tablets and vitamins than any of my patients.
11. Regarding alternative treatments I: am willing to give pretty much anything a go if it may give me some relief from pain, or improve my quality of life. I have regular massages and cupping to loosen off soft tissue to ease pressure on my joints, and often head to my physio for dry needling of more serious issues.
12. If I had to choose between an invisible illness or visible I would choose: Visible. I think the judgement would be less, and the understanding greater.
13. Regarding working and career: So far I have managed to maintain my planned career trajectory, with a few compromises along the way. At the moment I am studying on top of working in order to gain an extra qualification that will (hopefully) give me some career flexibility if my body puts a stop to my current plans.
14. People would be surprised to know: That my brave face is exactly that – a façade. I can count on one (crippled) hand the number of days I have been ‘comfortable’and ‘relatively pain free’ in the past 3 months.
15. The hardest thing to accept about my new reality has been: That pain is going to be a near-constant companion, irrespective of anything I may try to do.
16. Something I never thought I could do with my illness that I did was: Live on my own, and be mostly independent. Believe me – when you have days where you can’t dress yourself, let alone get yourself from your bed to the bathroom to the kitchen and back, being on your own is a big achievement!
17. The commercials about my illness: Do not exist.
18. Something I really miss doing since I was diagnosed is: Music. Where once I would give hour-long violin recitals and play whole concertos, I can now only reminisce. It breaks my heart whenever I think about it.
19. It was really hard to have to give up: Music. I may have moaned about the dedication it required at the time, but now it’s not a part of my life I miss it terribly.
20. A new hobby I have taken up since my diagnosis is: Writing. The first few times I was published I was so proud that I had taken my negatives and turned them into positives!
21. If I could have one day of feeling normal again I would: Climb the Sydney Harbour Bridge, then go on lots of roller coasters and rides, and finish the day dancing into the early hours of the morning at a great nightclub wearing towering heels! (I interpreted normal as normal with Energizer Bunny amounts of energy)
22. My illness has taught me: The way you cope will depend entirely on your attitude.
23. Want to know a secret? One thing people saythat gets under my skin is: The lack of understanding I sometimes get from people who should know better – my family, friends, and colleagues. I don’t cancel our plans because I change my mind, I cancel because my body has a mind of its own.
24. But I love it when people: Show they care by verbalising how they care, how they want to understand, and want to help me in any way they can.
25. My favourite motto, scripture, quote that gets me through tough times is: “A true optimist never lets life get in the way of living”. Yes, that was written by me,but I think it speaks volumes about both myself and my disease.
26. When someone is diagnosed I’d like to tell them: It won’t be fun, and it sure as hell won’t be pretty – but you are going to learn more about yourself and those around you than you ever dreamed you would.
27. Something that has surprised me about living with an illness is: How, even as a health professional and chronic disease sufferer, I can sometimes feel no empathy for other people with a chronic illness. The way some people – healthy or otherwise – treat their bodies astounds me daily. Frustrates me no end!
28. The nicest thing someone did for me when I wasn’t feeling well was: took the time to send me mail, to keep me feeling in the loop, to bring me my favourite take away and stay and chat for a while. It made me feel normal for a few moments and forget about how awful I felt.
29. I’m involved with Invisible Illness Week because: If everyone with an invisible illness spoke out, there would be no such thing as invisible people.
30. The fact that you read this list makes me feel: Honoured.
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