Thursday, September 2, 2010

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
CFS? Right now I have the diagnosis of mono but my primary says my symptoms don't match up so I'm heading to another specialist in a couple of weeks.

2. I was diagnosed with it in the year:
2010 hopefully

3. But I had symptoms since:
May 2010, I'm new to this

4. The biggest adjustment I’ve had to make is:
Not being able to do ANYTHING

5. Most people assume:
If I just _____ I'll get better.

6. The hardest part about mornings are:
Finding a reason to get out of bed.

7. My favorite medical TV show is:

8. A gadget I couldn’t live without is:
Computer with an internet connection: it is my link to the outside world

9. The hardest part about nights are:
I like nights. I usually feel pretty normal after my late afternoon/early evening rest session. The house is quiet and I can putter around or watch what I want on TV without having to worry about others.

10. Each day I take __ pills & vitamins. (No comments, please)
No meds. I tried taking a fist full of vitamins for several weeks but when they didn't do anything I stopped.

11. Regarding alternative treatments I:
Am currently using chiropractic and acupuncture. I am considering naturopathy and osteopathy.

12. If I had to choose between an invisible illness or visible I would choose:
Visible. The last time I had a protracted invisible illness my supervisor at an old job (not my present one) gave me crap for only working part time when another guy came in even though he was having chemo treatments at the time. I haven't let my current supervisor know what I have. I have been working through HR to keep a lid on it.

13. Regarding working and career:
I have been out of work for four months now. I have been replaced by others on all programs I used to work on. I have lost my office so that if I ever go back I will have to unpack a stack of moving boxes. I'll be lucky if I have a computer desk and a bookcase. I have probably killed my career dead even if I make it back to work. When people get really ill there no one wants to work with you since you are now "unreliable".

14. People would be surprised to know:
I was in the middle of my first ever figure skating competitive season when I got ill. I won a bronze and a silver medal and had one more competition to go. I was planning on skating with my mom in the adult week ice show in Lake Placid this summer.

15. The hardest thing to accept about my new reality has been:
Boredom. I'm 80% housebound and spend most of the day laying down. What the heck can I do with my time when I can't do anything?

16. Something I never thought I could do with my illness that I did was:
Learn to relax properly.

17. The commercials about my illness:
Since there is no cure for CFS there are no pills to advertise yet.

18. Something I really miss doing since I was diagnosed is:

19. It was really hard to have to give up:
Eating desserts. Since I am not exercising at all I am gaining weight even though I am eating way less food and have an ultra healthy diet. My body needs exercise to maintain its weight and I just can't do it.

20. A new hobby I have taken up since my diagnosis is:
Blogging in multiple blogs

21. If I could have one day of feeling normal again I would:
Drive to Lake Placid and skate with my mom and sister.

22. My illness has taught me:
Patience and how to say no

23. Want to know a secret? One thing people say that gets under my skin is:
Have you tried ____? It should fix _____.

24. But I love it when people:
Tell me they miss me.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Barn's burned now, now I can see the moon." -Masahide

26. When someone is diagnosed I’d like to tell them:
There are two new studies out showing a link between CFS and viruses. Maybe they might just figure this out and we'll have some antiviral drug protocols within a few years.

27. Something that has surprised me about living with an illness is:
How cranky my husband gets. How great my kid is.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Sent me a Tibetan Healing Bell CD which he recorded. It helps me sleep.

29. I’m involved with Invisible Illness Week because:
I'm an advocate at heart and we need to make ourselves visible even if we are housebound.

30. The fact that you read this list makes me feel:
Proud. Maybe this blogging thing will get the word out and help others.

1 comment:

  1. The more I read, the more I realize how much we all have in common. It flat out amazes me. Thank you so much for sharing. Tammy