Linds wrote a great blog post in honor of Invisible Awareness Week 2013 where she completed answers to “Thirty Things About My Illness” and encouraged others to do the same:
I want to do it, too! Please feel free to participate….you can post your answers in the comment section below, or feel free to write up a post on your blog.
1. The illness I live with is… I have postural orthostatic tachycardia syndrome, vasovagal syncope, panic disorder, and Lyme disease.
2. I was diagnosed in the year…. I was officially diagnosed with POTS, vasovagal syncope, and Lyme disease during 2013. Panic disorder during 2000.
3. I’ve had symptoms since…. I’ve had mild POTS and anxiety symptoms since childhood, as far back as around age 10, probably. But all of my symptoms went into overdrive during 2012, likely sparked by the Lyme infection.
4. The biggest adjustment I’ve had to make is…… Not being able to support my family financially. I still don’t cope with that well and am having a very difficult time coming to terms with it.
5. Most people assume…… That because I’ve been “going to the doctor for so long,” that I should be cured, and they’re surprise when I’m not.
6. The hardest part about mornings are….. Dealing with the dread and fear of getting out of bed. Will I be able to balance OK today? Will I have the strength to feed myself? Will I be in pain today? Some mornings, I cry before I get out of bed, because I’m so scared.
7. My favorite medical TV show is…. I don’t have one specific show that’s my favorite…unless Scrubs counts
8. A gadget I couldn’t live without is….. My iPod touch. When I’m too sick to sit up at my computer, it keeps me in touch with the world, and I feel less isolated.
9. The hardest part about nights is….. Insomnia. I’ve had some minor issues with it in the past, but nothing like this. The more I wake up during the night, the more upset I become, because lack of sleep makes my symptoms 100 times worse than they already are.
10. Each day I take ____ pills/vitamins/supplements…. It’s easier for me to tell you the number of different pills/supplements/vitamins I take per day, instead of an actual pill count (or, tincture count!). I take four prescription medications daily, and everything else is herbal/supplements…the total count? EIGHTEEN! Yikes. And, I have other medications I take periodically for head pain.
11. Regarding alternative treatments, I…. see a naturopath, and am very open to these treatments. I don’t know how much they’re helping, but it seems as if they keep me from getting worse!
12. If I had to chose between a visible illness or an invisible illness, I’d chose…. It doesn’t matter to me, because illness just sucks.
13. Regarding my work and career…. I have’t been able to work at all during the last eight months. I tried to go back to work in December and lasted seven weeks. It kills me every day. I would do anything to be able to work again. But when you can’t always sit up, and need assistance getting to the bathroom or bed…I don’t know any employer who would put up with that. Oh, and the spontaneous collapsing would be frowned upon, too.
14. People would be surprised to know…. A few months ago, I wrote goodbye notes to my husband and son, because I wasn’t sure I could keep going.
15. The hardest thing to accept about my new reality is…. I am unable to support my family financially (see a pattern here?).
16. Something that I never thought I could do with my illness but did was…. Attend my son’s outdoor graduation in June. Yes, I was in a wheelchair, and I vomited, and had to leave early…but I attended.
17. The commercials about my illness….. I’ve never heard or seen any.
18. Something I really miss doing since my diagnosis is…. I could list A LOT of things here, but if I had to pick one (other than work!), it would be driving.
19. It was really hard to give up…. Foods that I love. It still is. I have to be on a very low-sugar and yeast-free diet during my Lyme disease treatment. And I hate it.
20. A new hobby I have taken up since my diagnosis is.… Birdwatching! It’s so relaxing and fun for me.
21. If I could have ONE day of feeling normal, I would…. Go on a wonderful day trip with my husband, we me driving! We’d go hike, then, have a great lunch and dessert.
22. My illness has taught me…. That my husband is the most loyal, loving, kind human on planet earth. When I got sick, he could have easily left (I still wouldn’t blame him if he did), but he hasn’t.
23. One thing people say that gets under my skin… is, “I wish I could stay home and not have to work.” That makes me INSANE!! I’d rather dig ditches on the side of the highway and be healthy than feel like this and be stuck at home.
24. But I love it when people… Express support and indicate they’re here for me, even if it’s just with supportive words.
25. My favorite quote that get’s me though tough times is…. “Ask yourself ‘Am I doing my best?’ If the answer is ‘yes,’ then that’s all you can do.”
During my counseling internship, my supervisor told me that. i’ll never for get it. So simple, but true.
26. When someone is diagnosed, I’d like to tell them... “I’m here for you.”
27. Something that has surprised me about living with an illness is….. Most other people with chronic illnesses are so willing to provide help and support.
28. The nicest thing someone has done for me when I wasn’t feeling well was…. When my husband told me no matter what happened, no matter how sick I got, he wasn’t going anywhere.
29. I’m involved in Invisible Illness Week because… It’s something toward which we need to draw more awareness.
30. The fact that you read this list makes me feel… Surprised, because it’s darn long!