That "30 Things" meme...
1. I live with: Rheumatoid syndrome, osteo-arthritis, diabetes, peripheral neuropathy, raynauld's phenomena, fibromyalgia, mild seasonal affective disorder, multiple chemical sensitivities, multiple food sensitivities.
2. I was diagnosed in the year: Multiple chemical sensitivities- originally 1982 with various additions to the list ever since, Multiple food sensitivities- ditto; Osteo arthritis- 1982; Diabetes- 1995; Rheumatoid syndrome- tentatively 1998, conclusively 2001; Fibromyalgia- 2001; Raynauld's phenomena- 2002
3. But I had symptoms since: Some chemical and food sensitivities since birth (both getting broader and worse as the rest of the litany has grown). Joint problems that were probably injury-related early osteo since I was 16. Reactive hypoglycemia since high school which slid back-and-forth into diabetes before I consistently hit the clinical diagnosis point. Mild issues that were probably rheumatoid-related started in 1988, a few months after the first round of treatment after my first lumpectomy. That, with other symptoms, hit high drive in 1998, probably due to the stress of dealing with a severely injured child, a marital explosion followed by a passive-aggressive divorce process, a messy legal case, losing the business I'd helped build, and my second round with breast cancer... pretty much all at the same time.
4. The biggest adjustment I’ve had to make is: Accepting not being able to do all the things I used to be able to do. I was proud of being as strong as the guys, and being able to keep up with just about anyone at almost anything. I was able to do whatever I wanted to do. And now... I can't even manage a trip to the grocery store on my own without strategic planning. I've had to give up a lot of the foods and activities I love.... and I still grump about it (and sometimes splurge anyways and just deal with the fallout).
5. Most people assume: I have had someone scold me for using a cane "just to get attention". And several someones get pissy at me for using "someone else's" handicapped parking tag on various days I wasn't using the cane or walker. I don't know what is going through people's heads - I just see the sometimes stupid and clueless things they do/say. And sometimes the wonderful, helpful, just plain *sweet* things they do or say.
6. The hardest parts about mornings are: Waking up and actually managing to get out of bed. I often have a hard time getting to sleep and depending on which combination of drugs I'm currently on, waking up can sometimes take serious effort. Getting out of bed is sometimes an accomplishment by itself - whichever joints are acting up are stiff and hard to move, whichever muscle set is currently being difficult is either insanely tight or twitching to its own rhythm... and my balance is worst first thing in the morning (and when I'm really tired).
7. My favorite medical TV show is: House. But it's for the eye candy, not for the (rather horrible) medical aspects of the show. I don't generally care for "medical shows" - even the supposed educational ones are more sensationalism than fact, and usually paint everything as a lot more black-and-white than anything medical is. Plus they usually fall into the "pathetic cripple", the "noble sufferer" or the "and they got cured and lived happily ever after" categories. Blech.
8. A gadget I couldn’t live without is: Probably the one gadget that makes the biggest difference for me is my glucometer. Using it to adjust my food day-to-day is the biggest reason my diabetes is drug-and-diet controlled instead of insulin dependent. We have a bunch of kitchen and household gadgets that make life a lot easier. I use a cane sometimes and a wheeled walker sometimes. As much as I dislike both of them, they enable me to do a lot that I couldn't do without them.
9. The hardest part about nights are: Getting comfortable enough / relaxed enough to be able to fall asleep. Getting back to sleep repeatedly after almost every time I move, or after some random muscle gets twitchy or some joint decides to lock up.
10. Each day I take __ pills & vitamins. Anywhere from 11 to 34, depending on what regimen I'm on and what's flaring at the time.
11. Regarding alternative treatments I: Use what works. For me, so far, that is a few targeted herbal supplements, a TENS unit (when I can afford the electrodes), massage (when I can afford it), energy-based bodywork and a yoga/PT stretching routine to keep as much range of motion as possible.
12. If I had to choose between an invisible illness or visible I would choose: NONE OF THE ABOVE. (I think this is a stupid question. Few people would *choose* to have any illness at all!)
13. Regarding working and career: I manage. Most days. It's especially difficult since the building I work in is not ADA compliant (and since it's on the national historical registry and has all sorts of federal wavers for various regulations and codes, it never will be). The field I work in - taxation and litigation accounting - has a tendency to high stress and sometimes aggravates whatever's flaring at the moment. My current boss isn't very understanding and doesn't make any accommodations, so it's harder than it really has to be... but in the current economy, most days I'm just glad to have a job. I'm hoping to change careers to one that will be a lot less stressing, and that will give me a more flexible schedule, but I don't learn as fast as I used to, and paying for the training has to come in bits and pieces as it can be wedged into the budget... so it's going to take longer than I'd like. *NOT* working isn't an option - there's just no way to live on what I'd get on disability.
14. People would be surprised to know: How hard I work to get through each day. How hard I push myself before I'll even consider asking for help or admitting I can't do something. How much I regret the things I miss because of energy or pain levels, stairs, or whatever. How much I just want to hermit away and not have to deal with what it takes to be functioning and "proper" and social.
15. The hardest thing to accept about my new reality has been: Limitations, and needing to ask for help. Using devices, tools, or accommodations that are so often interpreted by folks out there as indicating "less than" or "incapable". (Geesh, just because I'm using a cane or walker or wheelchair, or just because I need help balancing or reaching or whatever doesn't mean that I'm invisible, or incapable of speaking for myself or knowing my own wants and needs.)
16. Something I never thought I could do with my illness that I did was: Still enjoy life, still have a mate that loves me, still have friends that enjoy spending time with me - even when I'm drugged or grumpy.
17. The commercials about my illness: Are laughable.
18. Something I really miss doing since I was diagnosed is: Camping and hiking. Dancing. I miss dancing a LOT. Eating spicy ethnic foods. Not having to eat according to a clock or a machine. Being able to wear sexy, strappy sky-high-heeled shoes. Having pretty hands. Not having prednisone's classic effects on my face.
19. It was really hard to have to give up: The confidence that I could do *anything*. The luxury of not having to take accessibility, food, and other medical issues into account with almost every damn thing.
20. A new hobby I have taken up since my diagnosis is: Snarking at doctors. Threatening lab technicians who smirk when I tell them I'm a hard stick, and they'll have to do it *this* way if they want to ever see any blood. Ranting about insurance companies. Oh. You mean like *handcrafts* and such. Still sulking at having to give up several that I loved. Still refusing to give away several projects I *AM* going to finish one day damnit.
21. If I could have one day of feeling normal again I would: This *IS* normal for me. If I had one day with joints and muscles that worked and without having my skin falling off and without a constant background noise of "ouch"? I'd take my Honey up to a nice secluded holler in the mountains and take advantage of her. Repeatedly. (I miss outdoor sex. I miss sex that isn't significantly affected by what joints work, how much energy is left after breathing all day, and which meds I'm currently taking. (I have a special hell designed just for doctors who can't have an intelligent conversation about the effects of medications on libido and sexual response, and for pharma folks who don't think such considerations are important.))
22. My illness has taught me: Patience. Tolerance. Endurance. To accept help and love. New curse words. Resiliency. That joy is a choice. That life is a choice.
23. One thing people say that gets under my skin is: "You just need to try (whatever)." Odds are good that I've either tried it and it was useless, I can't afford it, the side effects are worse than the original problems, or it's not available in my area/country.
24. But I love it when people: Let me know that they enjoy our time together and what activities I can do with them, even if those activities are severely limited sometimes. Understand when I lose my nouns and help me communicate without reacting like I'm stupid or a freak. (Secondary aphasia isn't that unusual in folks with chronic pain issues, especially those with fibro. For me it shows up when I'm fighting off a flare, when I'm overtired, or when I've pushed myself too hard.) Make accommodations, let me know about adaptations, options, or whatever without making a fuss or a scene.
25. My favorite motto, scripture, quote that gets me through tough times is: "Right now is all that matters." Some days, just focusing on *this* day, *this* hour, or *this* task that I need/want to get done. Other days are more in Tank Girl's style: "Die die die die die!"
26. When someone is diagnosed I’d like to tell them: To be gentle with themselves. To learn to ask for help when they need it. (Yes, I know I'm still working on that one.... I tell myself a lot, too.) To get as educated as they possibly can about their condition(s). To remember to smell the flowers and enjoy life..
27. Something that has surprised me about living with an illness is: How stupid and thoughtless and just plain cruel some people are. How selfless and thoughtful and amazing some people are.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen to me while I raged, and then held me while I cried. Told me - and then showed me, over a lot of years - that I am more than my conditions, and that they love me and want to be with me, want to continue to make a life with me... no matter what gadgets, medications or accommodations are involved in that. (Thank you Honey.)
29. I’m involved with Invisible Illness Week because: Too many people don't know just how common invisible chronic conditions are and there are way too many (often incorrect) assumptions about even the conditions that folks think they know something about.
30. The fact that you read this list makes me feel: Surprised. (You read all this long-ass bitchy-whiny rambling? Wow.)
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
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