In honor of Invisible Illness Awareness Week, here’s my contribution to the “30 things” meme. Want to write your own? Copy and paste, then change my responses to yours!
2009 Invisible Illness Week
1. The illness I live with is: fibromyalgia (I’ll mainly focus on this one since I have a few others).
2. I was diagnosed with it in the year: 1994.
3. But I have had problems attributable to it since: I was about 9.
4. The biggest adjustment I’ve had to make is: managing my fatigue level.
5. Most people assume: I am fine because I don’t look as sick as I am.
6. The hardest part about mornings are: stiffness and pain (not only from the fibromyalgia, but from the Rheumatoid Arthritis that I also have), trying to wake up from the drugs I have to take to sleep, and getting the coffee made when I can’t pick up the milk.
7. My favorite medical TV show is: none – nothing is “real” enough.
8. A gadget I couldn’t live without is: my Dycem – a kind of “sticky” plastic sheeting that can be cut into pieces and used for all kinds of things – like holding jars, opening jars, turning door knobs, etc.
9. The hardest parts about nights are: going to bed so doggone early (8:30-9:00pm) (I need so much sleep it really eats into things I’d like / need to do); getting all my nightly preparations done – teeth brushed, bathroom, put on nightgown, put Ol’ Curmudgeon’s eye drops in his eyes (he just can’t do that), sleep mask on (I use a Hibermate from Australia – has “ear pillows” to help block out some sounds that might keep me awake, and is the most comfortable and effective sleep mask I’ve tried – and I’ve tried a bunch), and rearrange my “pillow piles” (I need to sleep with my feet and legs elevated, and my head and chest slightly elevated).
10. Each day I take: 31 pills (RX plus vitamins), plus I have a rescue inhaler which I use at the heights of the Spring and Autumn allergy seasons) and a Flonase nasal spray.
11. Regarding alternative treatments: I haven’t found them helpful at all, except for chiropractic, and that will only work under certain circumstances.
12. If I had to choose between an invisible illness or visible I would choose: visible – so people would not have so many unfulfillable expectations of me and I wouldn’t have to do quite so much explaining.
13. Regarding working and career: I managed to complete my PhD and start a “new” career in medical software, but within 2 1/2 years had to quit working outside the house. I am very fortunate that my disability occurred after computers, internet and UPS / FedX were all available and I could coordinate things. I changed careers and became a Legal Nurse Consultant. I keep my research skills honed with medical and legal research on the internet for my attorney clients.
14. People would be surprised to know: that I’m in pain nearly every moment of every single day. Although I try not to make a big deal out of it, unless I’m in severe pain or need accommodations to lessen my pain, I don’t always manage it. I have great difficulty managing the fatigue aspects of my fibro, too, often thinking I will be able to do more than I actually can.
15. The hardest thing to accept about my new reality has been: the physical limitations. I used to be a hiker and caver, and loved to go out dancing and for walks and bicycling – and I just can’t do those things at all any more. Rats! In addition, and even more importantly, I am unable to attend Church because of the pain and the fatigue and the stiffness.
16. Something I never thought I could do with my illness: stay at home so much and be content to do so!.
17. The commercials about my illness: are good to see, but they raise unrealistic expectations – “take a pill and all will be wonderful.” Doesn’t work that way. And a treatment / medication combination that was working well for several months or even years will suddenly stop working. Then my good rheumatologist and internist and I have to search for another treatment / medication combination that will work for a while longer. Also, not all people with fibro can take the medications.
18. Something I really miss doing since I was diagnosed is: attending Church and waltzing and doing the swing with my wonderful Ol’ Curmudgeon! Also, doing things with my 11 grandchildren.
19. It was really hard to have to give up: attending Church and going to work.
20. A new hobby I took up after my diagnosis was: woodturning, but now I can’t do that because of the pain and lack of coordination in my hands.
21. If I could have one day of feeling normal again I would: clean house and cook a really good dinner for my husband.
22. My illness has taught me: that I’m not as independent as I would like to be.
23. Want to know a secret? One thing people say that gets under my skin is: “But you don’t look sick / disabled!” This is so frustrating! If I say I am, then I am – don’t rub it in. Don’t set so many unrealistic expectations just because I don’t look the way you think I should.
24. But I love it when people: say “Wow, you seem to be doing pretty well in spite of it – you must work hard to do that. good for you!”
25. My favorite motto, scripture, quote that gets me through tough times is: “The body is a slave, the soul a sovereign, and therefore it is due to Divine mercy when the body is worn out by illness: for thereby the passions are weakened, and a man comes to himself; indeed, bodily illness itself is sometimes caused by the passions.”~*~ St. Seraphim of Sarov, Spiritual Instructions
26. When someone is diagnosed I’d like to tell them: to find others who’ve been through it so you have a support system that understands you on a deep level from the start, and add to that a network of friends, family, whoever to be your support team. and have patience – it will get easier.
27. Something that has surprised me about living with an illness is: how much I can still do if my attitude is right. And conversely, how little I can do if my attitude is not right.
28. The nicest thing someone did for me when I wasn’t feeling well was: (I can only pick one? I have to list a few): take me places when I’m too wiped out or my hands hurt too much to drive. Go to the grocery with me and help load and unload the cart and then stow the groceries in the car. And push me in my wheelchair when I cannot walk. I have to mention my Ol’ Curmudgeon who taught himself to bake bread and to cook all kinds of great dishes (Julia Child, Alton Brown, Emeril, etc) now that I’m unable to cook very often (other than to open and heat a can of soup). And I have to give a big load of thanks to Emmy, my black Lab service dog. Because of her, I’m able to do so much more than I could before she came prancing into my life!
Getting my cane
Getting my cellphone
Bringing me my keys
What can I do for you now, Mom?
29. I’m involved with Invisible Illness Week because: I KNOW the impact it has – and I know many people can do well in spite of illness if they get good information and advice, which Invisible Illness Week is all about!
30. The fact that you have read this list makes me feel: honored, humbled, thankful, lucky, thrilled. Thank you for taking the time!
