It’s Invisible Illness Week… who knew?

Unfortunately that is exactly the problem with invisible illnesses. They are the ones that cause devastating, debilitating effects, but to others if they find out the patient is ill, would say… They have _____… who knew?

The CALDA blog called Touched By Lyme had an interesting entry recently… “TOUCHED BY LYME: 30 things you don’t know about Lyme disease” Here’s mine—

30 Things About My Invisible Illness You May Not Know

1. The illness I live with: Lyme and other tick-borne infections
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: birth – 1978
4. The biggest adjustment I’ve had to make is: to not volunteer to help do things that tax me physically
5. Most people assume: Lyme plays itself out in a few weeks; sooner if you get a few days of antibiotics
6. The hardest part about mornings are: first getting out of the bed
7. My favorite medical TV show is: Mystery Diagnosis but I only see it infrequently because I can’t afford cable.
8. A gadget I couldn’t live without is: my shower seat!
9. The hardest part about nights are: getting to sleep around the pain and anxiety
10. Each day I take 42 pills & vitamins.
11. Regarding alternative treatments I: have not tried any
12. If I had to choose between an invisible illness or visible I would choose: VISIBLE, one that SCREAMS I’m sick
13. Regarding working and career: I can’t work
14. People would be surprised to know: how much pain I have and how often I am bedridden.
15. The hardest thing to accept about my new reality has been: I can’t do things I want to do or used to do.
16. Something I never thought I could do with my illness that I did was: go to junior church camp as a counselor!
17. The commercials about my illness: are non-existent.
18. Something I really miss doing since I was diagnosed is: waking up, going through the day, going to bed… without having to stop and take a bunch of pills.
19. It was really hard to have to give up: homeschooling
20. A new hobby I have taken up since my diagnosis is: sleeping
21. If I could have one day of feeling normal again I would: would not fully know it, as I’ve been ill since birth.
22. My illness has taught me: I have to take care of myself in order to take care of my family. Also, how to go to a doctor and talk to him about ME.
23. Want to know a secret? One thing people say that gets under my skin is: it must ‘all be in my head’ since Lyme is ‘cured’ by a few days of antibiotics. My doctor isn’t looking to cure me. Just get me into remission.
24. But I love it when people: ask how I’m doing and actually want to know the truth.
25. My favorite motto, scripture, quote that gets me through tough times is: God will not put on us more than we can handle. Jesus will help me through.
26. When someone is diagnosed I’d like to tell them: as much as I can about what to expect in the coming months, and that yes, it WILL get better… eventually.
27. Something that has surprised me about living with an illness is: how totally it affects every little thing you OR your family do.
28. The nicest thing someone did for me when I wasn’t feeling well was: prayed for me and told me they were.
29. I’m involved with Invisible Illness Week because: Most of my family (parents, brothers, children, myself)and some dear friends of mine all have one or more invisible illnesses.
30. The fact that you read this list makes me feel: blessed.

I’ve read through some of the others and one thing that I have to agree with them on (but I answered differently) was that most people think I am ‘normal’ or ‘not sick anymore’ – if they ever knew I was. These infections mess up and take over so many different things in the body it takes months, years in most cases, to be ‘not sick anymore’. I am doing so much better than I was a year ago, but I am nowhere near ‘not sick anymore’.

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