Monday, September 10, 2012

30 things about my invisible disease you may not know

1. The illness I live with is: Chronic Lyme Disease
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is: Allowing other people to help me.
5. Most people assume: That I'm "feeling better" if I'm up and out.
6. The hardest part about mornings are: Getting up - where I was always eager to get going.
7. My favorite medical TV show: Used to be 'House', but the disease made it difficult to follow the plot and to concentrate.
8. A gadget I couldn’t live without is: E-reader
9. The hardest part about nights are: Switching between insomnia or sleeping like a dead person.
10. Each day I take 54 pills, supplements & vitamins.
11. Regarding alternative treatments I: Believe that research is needed, and am grateful for the support I get from my doctors and a Chinese healer who know about each other and the items I'm taking to help support my body.
12. If I had to choose between an invisible illness or visible I would choose: Visible illness - when I was in a wheelchair a few times in 2011, people immediately became more courteous and helpful. And my family had fun popping wheelies and making me laugh!
13. Regarding working and career: It was hard to admit that I could no longer do what I used to be able to do quickly and efficiently.
14. People would be surprised to know: That every little thing takes an effort, to get started, to get going, to get up and out.
15. The hardest thing to accept about my new reality has been: I have always wanted to donate my organs, since age 12. Now the doctor told me I can never do that. For some reason that upset me more than even the knowledge that I also have co-infections called Babesia and Bartonella, plus another (as yet) unnamed infection.
16. Something I never thought I could do with my illness that I did was: Drive alone across highway 401 in morning rush hour traffic to a hospital for drug allergy tests.
17. The commercials about my illness: Are not yet enough to protect others from contracting Lyme Disease.
18. Something I really miss doing since I was diagnosed is: Planning events for my friends and family.
19. It was really hard to have to give up: Cheese and bread!
20. A new hobby I have taken up since my diagnosis is: Educating others about Lyme disease, which includes public speaking. Is that a hobby? It takes up enough time and energy - with the help of faithful friends!
21. If I could have one week of feeling normal again I would: Go on a SCUBA liveaboard in Fiji or somewhere. (see Bucket list tab above)
22. My illness has taught me: That one person's idea or voice CAN make a difference.
23. Want to know a secret? One thing people say that gets under my skin is: "It might be a mental block or problem you have that is making you sick"
24. But I love it when people: Understand that it is not about my being sick, but about everyone else being vulnerable without more information.
25. My favorite motto, scripture, quote that gets me through tough times is: We are not alone; we live in God's world.
26. When someone is diagnosed I’d like to tell them: I'm here to help if you are scared or have questions. If I don't know, I'll help you find out.
27. Something that has surprised me about living with this illness is: How eager people are to know more, to understand and to be able to help.
28. The nicest thing someone did for me when I wasn’t feeling well was: Believe me.
29. I’m involved with Invisible Illness Week because: I'm morally compelled to share what I have had to learn about this disease, to protect my own sanity and the health of those I care about, and the ones that are dear to them.
30. The fact that you read this list makes me feel: Hopeful that we are getting more information, awareness and knowledge out there - and maybe, someday soon, we can even get treated in our own country without going bankrupt in the process! Better yet, more information will prevent people getting to the state where so many of us find ourselves, dealing with long-term or chronic Lyme Disease.


Paula said...

A great list, Marlene! I do believe that one day, blogs like ours won't be necessary, as people will have easy access to all the information they need.....from their Canadian doctors! I'm really holding out hope for that! Bless you for all you are doing.


Merry said...

Great list, I can relate to many of these things. My husband was disabled in 2000 from Chronic Lyme, and was likely infected back in 1985. Thanks for getting the word out!


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