I’m a little late with this list, as Invisible Illness Awareness Week ended on Sunday. But I thought I’d still go ahead and fill it out, just for the heck of it. Here goes:
1. The illnesses I live with are: High Blood Pressure, Fibromyalgia, Osteoarthritis, Endometriosis, Hemangioma Spinal Tumor, Thyroid Disease, Chronic Tendinitis & Plantar Fasciitis, Carpal Tunnel, Sleep Apnea, Eye & Vision Problems, Anxiety, Depression….ummm, sure there’s more but I haven’t slept all night, so I can’t remember anymore right now. So we’ll stop there.
2. I was diagnosed with it in the year: well everything began around 1980 or so.
3. But I had symptoms since: same, around 1980
4. The biggest adjustment I’ve had to make is: quenching my spontaneity, forcing myself to “rest”. Which is difficult for my Type A personality.
5. Most people assume: That I am exaggerating when I tell them I have chronic pain, because after 30 years I have learned how to tune out the pain and look completely normal…..not at all like a person unaccustomed to severe pain…..if they could feel what I feel for 5 minutes they would be writhing on the floor, screaming. I can carry on a conversation, completely devoid of any facial grimacing or screaming. They have no idea.
6. The hardest part about mornings are: when I open my eyes and realize I have to face another day feeling this way.
7. My favorite medical TV show is: I don’t watch much TV.
8. A gadget I couldn’t live without is: any device on which I can access the internet. I don’t care what it is. I have a desktop PC, a laptop, a tablet and a smartphone. Any of those will work.
9. The hardest part about nights are: trying to fall sleep, which often only happens every other night. Fibro (pain) & Menopause (hormonal changes) & a hypersensitive central nervous system are making my ability to sleep nearly impossible.
10. Each day I take _20_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments: You name it, I’ve tried it. Even once, I tried magnetic seat cushion and insoles. $200 down the drain. I do take Valerian for sleep, also Tart Cherry juice concentrate for sleep and inflammation. They only work intermittently.
12. If I had to choose between an invisible illness or visible I would choose: Oh by all means, VISIBLE. It would make life a lot easier if I didn’t have to constantly try to explain to people and educate people about all the reasons why I sometimes need a wheelchair and sometimes don’t. Or why sometimes I can go shopping, and sometimes I can’t walk from my bed to the bathroom. If I had some obvious handicap, no one would question or drill me on what I think I’m doing using the last available scooter at Walmart, when I am obviously so “healthy”.
13. Regarding working and career: I am passionate about my 17 year antique business and will not give it up until I am completely unable to drag myself out of bed….if I have to crawl on my hands and knees, I will not yet quit. But that day may not be far off.
14. People would be surprised to know: That I have very few close friends, outside of my online friends. I actually prefer it that way. I don’t have the energy to maintain face-to-face friendships, where with online friends, I can turn on my PC, chat for 5-10 minutes in my pajamas, then shut it off and go lay down.
15. The hardest thing to accept about my new reality has been: the constant irritibility and anger that churns below the surface, and the volatility of my moods. I can go from zero to bitch in 4.3 seconds.
17. The commercials about my illness: …are a joke. Especially the one about Lyrica. I tried Lyrica and was a drooling zombie who couldn’t carry on a telephone conversation, let alone attend an art class. LOL
18. Something I really miss doing since I was diagnosed is: exercising
19. It was really hard to have to give up: walking without worrying about how many minutes I’ll have before my feet start screaming.
20. A new hobby I have taken up since my diagnosis is: blogging. Just started.
21. If I could have one day of feeling normal again I would: go to a big antique market and walk around, shopping as long as I wanted.
22. My illness has taught me: how little control I have over my own body.
23. Want to know a secret? One thing people say that gets under my skin is: “You’re so lucky you have a supportive husband.” As if to say, since you HAVE a supportive husband, you don’t need any help from ME, thank god. In my opinion: Convenient COP OUT. People have rarely offered me any help with anything, EVER. So I either do what needs doing by myself or with the help of my 62 year old husband who works 10-12 hours a day at work, or we don’t get it done. If neither one of us is able to mop the floors or dust for 2 weeks or more, then we watch the dust bunnies roll across the floor…. we have no choice sometimes.
24. But I love it when people: …don’t make excuses and just say “I’m sorry for what you are going through. You are in my thoughts.”…..without trying to give advice or “tips” when they know nothing about me or what I deal with.
25. My favorite motto, scripture, quote that gets me through tough times is: Gotta keep laughing. If I hadn’t inherited my dad’s sense of humor, I would not be here right now. Unfortunately I also inherited his hot temper. So that makes life interesting. LOL
26. When someone is diagnosed I’d like to tell them: You are not alone. There are millions of people who struggle with chronic illness, invisible illness, pain, loneliness, isolation….. it’s hard but if we can support each other we’ll make it.
27. Something that has surprised me about living with an illness is: how strong I really am.
28. The nicest thing someone did for me when I wasn’t feeling well was: My hubby does nice things for me all the time, little things that mean so much. He’s the best thing that ever happened to me.
29. I’m involved with Invisible Illness Week because: Actually, I missed most of it, I hate that…..I just didn’t realize til it was too late.
30. The fact that you read this list makes me feel: That somebody gives a damn. And I appreciate it more than you know. Thanks xoxoxo