30 Things About My Invisible Illness You May Not Know

[deirdre]

1. The illness I live with is:

1. Hypothyroid disease


2. Fibromyalgia


3. Celiac disease


4. Sleep apnea


5. Back issues in L4-L5-S1 that lead to pain and numbness

I think this went celiac -> fibromyalgia -> thyroid -> sleep apnea, though the middle two may be backwards. Celiac's a malabsorption problem, and the thyroid issue can be caused by a shortage of iodine. I'm not sure how fibromyalgia's triggered, but magnesium deficiency is classic, so again it may be absorption related. Sleep apnea is at least partly related to structural changes in my thyroid, though both my parents have it as well.

From 1996 to 2005, I lived with depression following the death of my first husband. Getting most of the above under control helped the remaining depression to resolve.

2. I was diagnosed with it in the year:

1. Hypothyroid disease: 2009


2. Fibromyalgia: 1997


3. Celiac disease: 1997


4. Sleep apnea: 2002


5. Back issues in L4-L5-S1 that lead to pain and numbness: 2009

3. But I had symptoms since:

1. Hypothyroid disease: 1976


2. Fibromyalgia: 1976


3. Celiac disease: 1970


4. Sleep apnea: In 1990, my date asked me if I knew I had sleep apnea....


5. Back issues in L4-L5-S1 that lead to pain and numbness: 2000, though there was some inkling of it occasionally going back another 10 years

For these, the biggest is celiac disease, because that was something that could have been identified when I was 11 and it was mis-interpreted.

4. The biggest adjustment I’ve had to make is:
I'm simply not as able to do as much physically.

5. Most people assume:
That I'm a space cadet. Sometimes I have trouble remembering things. If I'm in a lot of pain or very tired or I have just taken gabapentin, sometimes those things prevent proper sorting of memories.

6. The hardest part about mornings are:
I need to sleep 8 hours. Unfortunately, lately I've been waking up after 6 solely because my meds have worn off and I'm in too much pain to sleep.

7. My favorite medical TV show is:
Dr. G, Medical Examiner (non-fiction)
House (fiction)

8. A gadget I couldn’t live without is:
My CPAP machine.

9. The hardest part about nights are:
It takes me a long time to get tired and fall asleep. Rick's typically asleep within 5 minutes. I know from my CPAP's ramp function that I'm frequently awake 20-40 minutes before falling asleep even when I feel exhausted.

10. Each day I take __ pills & vitamins. (No comments, please)
I actually have no idea.

Prescriptions: nortriptyline (for sleep regulation), vicodin (for back pain), gabapentin (for body pain), synthroid (for thyroid) -- those are every day. I have two athsma inhalers and a steroid nasal spray that I use if I'm having nose or lung problems.

OTC: ibuprofen, tylenol

Vitamins: multi, Vitamin D, B-12, 5-HTP or Tryptophan, Magnesium/Malic Acid, Selenium, Zinc, dessicated OTC thyroid, ferritin (iron transport molecule), sometimes I take probiotics.

11. Regarding alternative treatments I:
Have been going to an acupuncturist for two years. I need to also see a chiropractor.

My main "alternative" treatment is Iyengar yoga with a bit of Pranayama practice thrown in.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I can frequently pass for normal, or at least fannish normal. :)

13. Regarding working and career:
It hasn't affected it that much except that my job does require me to be awake enough to think. If I'm in a lot of pain, I don't feel really social.

14. People would be surprised to know:
Some of the interconnections between what I suffer from.

15. The hardest thing to accept about my new reality has been:
Until I was 30, I worked two full-time jobs and had a life. I can't do that any more.

Also? I'd really like to visit Machu Picchu, but having altitude-reactive athsma pretty much means that'll never happen. I'm truly miserable above 5,000 feet. Sadly, my father lives at 8,000 feet, so I don't get to see him as much as I'd like. He's as miserable at low altitude as I am at high.

16. Something I never thought I could do with my illness that I did was:
Walk from our hotel to the Acropolis, walk all the way around it, up it, and back to our hotel. (This was before the numbness issue, though.)

17. The commercials about my illness:
Annoy the heck out of me.

18. Something I really miss doing since I was diagnosed is:
Surfing, though I hadn't done it in many years.
Bicycling also.

19. It was really hard to have to give up:
Rowing!

20. A new hobby I have taken up since my diagnosis is:
Fountain pens.

21. If I could have one day of feeling normal again I would:
Probably finish one of the woodworking projects in the garage, like a ramp for my three-legged cat.

22. My illness has taught me:
To be more empathetic.

Also, perversely, getting the back diagnosis done this year has meant that I feel more active, because a handicap placard means I'm not dreading walking far enough that my leg will go numb. I can brave San Francisco parking now. Getting the thyroid handled means the soles of my feet don't burn (how's that for a weird thyroid symptom?)

23. Want to know a secret? One thing people say that gets under my skin is:
I'm really tired of vegans in particular trying to push their diet on me. I don't have these conditions because I eat meat. Everything started going haywire because I ate wheat, and when I tried to go vegetarian, that's when things started going even more badly.

24. But I love it when people:
Tell me about places that serve gluten-free food. Recipes are good, but places where I don't have to cook are even better.

25. My favorite motto, scripture, quote that gets me through tough times is:
Never give up, never surrender.

26. When someone is diagnosed I’d like to tell them:
Especially for celiac disease: you'll get used to it. I rarely miss breadstuffs these days.

27. Something that has surprised me about living with an illness is:
On a good day, how much I can get done.

I managed to get through grad school twice.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Rick making gluten-free crepes for the first time was the nicest. He also makes gluten-free pies and stuff.

29. I’m involved with Invisible Illness Week because:
shweta_narayan posted about it, and I hadn't heard about it before.

30. The fact that you read this list makes me feel:
Ehh, it is what it is.