30 Things About My Invisible Illness You May Not Know (http://invisibleillnessweek.com)
1. The illness I live with is: Chronic Fatigue Syndrome (CFS) & Fibromyalgia (FM)
2. I was diagnosed with it in the year: 2002
3. But I had symptoms since: 2001
4. The biggest adjustment I’ve had to make is: I can no longer do the things I love - dancing, swimming, running, anything that requires energy
5. Most people assume: It's all in my head
6. The hardest part about mornings are: Never feeling well rested or refreshed
7. My favorite medical TV show is: Gray's Anatomy
8. A gadget I couldn’t live without is: My laptop. It's my link to the outside world.
9. The hardest part about nights are: Lying awake for hours...not being able to sleep because of the pain.
10. Each day I take __ pills & vitamins: 11 (which is less than most people with CFS/FM)
11. Regarding alternative treatments I: have tried homeopathy, naturopathy, acupuncture, pranic healing, yunani - none of these have worked. I have found that yoga helps if ptacticed regularly.
12. If I had to choose between an invisible illness or visible I would choose: Visible. At least people would be able to see that I'm not making it all up.
13. Regarding working and career: Had to give up in 2002 because of my illness.
14. People would be surprised to know: I have been exhausted for 7 yrs. And in pain almost all the time. I try not to make a big deal about it, but it is a huge deal to me.
15. The hardest thing to accept about my new reality has been: That I (or anyone else) don't understand my illness. I don't know whether a cause or cure will ever be found for it.
16. Something I never thought I could do with my illness that I did was: get my yoga teaching certificate
17. The commercials about my illness: Have just started. I'm glad people are beginning to recognize fibromyalgia as an illness. Unfortunately still nothing about CFS.
18. Something I really miss doing since I was diagnosed is: Running. Dancing. Working. Studying. Being self-reliant.
19. It was really hard to have to give up: my life as it was.
20. A new hobby I have taken up since my diagnosis is: Gardening (well, I just started 2 days ago)
21. If I could have one day of feeling normal again I would: go sky diving followed by dancing all night.
22. My illness has taught me: the importance of being healthy.
23. Want to know a secret? One thing people say that gets under my skin is: Snap out of it (well, duh, thanks...that never occurred to me for 7 years). If you can't say anything helpful, pls don't say anything.
24. But I love it when people: people help me in the most unexpected ways.
25. My favorite motto, scripture, quote that gets me through tough times is: "This body is perishable, consciousness is of a nature to dissolve, and all objects of clinging are impermanent, suffering and subject to change." The body is only a temporary vehicle. It is my soul that will continue. And my soul is only a part of the Universal consciousness. So why despair for the body?
26. When someone is diagnosed I’d like to tell them: Learn to listen to your body. Rest before you get tired. Don't compare yourself - not to anyone else and not to yourself before you got ill.
27. Something that has surprised me about living with an illness is: Millions of dollars (& pounds) are being spent on researching CFS, over 1 million Americans suffer from it, yet we are nowhere close to discovering what it is or to finding a cure.
29. I’m involved with Invisible Illness Week because: I want people to recognise that an invisible illness can be as debilitating as a visible one.
30. The fact that you read this list makes me feel: Happy, that you cared enough to read it.
I have to say that in the beginning I didn’t quite understand what you were going through. I probably never really will. But knowing you for as long as I have and seeing you through your good days and bad days, I’ve found respect in your perseverance; your continued effort to hope for a cure and in the meanwhile live life to the fullest. I love that you are writing this blog. I believe that a part of you healing may be reaching out to people with the same condition and helping them understand theirs.
ReplyDeleteI will continue to live in the hope that on a good day sometime soon we will be wearing pink patent pumps and dancing all night :) Love you.
Thanks Seema. It's having friends like you that make it easier to get through the days :)
ReplyDeleteGreat answers, and so true. I look forward to reading your posts.
ReplyDeleteThank you so much for sharing. I wish you good health.
ReplyDeleteIt is good to set down how you feel and keep a record of your symptoms sometimes that record can be invaluable like in my case. I was diagnosed with ME/CFS and after 4 years a chance course of Amoxycillin improved my symptoms and led my GP to suspect Lyme Disease. With tests leaving 50% of people with false negative many ME/CFS patients are not properly assessed for lyme.
ReplyDeleteInspite of the controversy GP treated me on long term antibiotics and I am now 100% I was so lucky.
Have a look at my story and links on my blog the one on ME/CFS/Lyme is a real eye opener.
I just found your blog and I loved this list you've written up. So many of them apply to me. I've had CFS since 2001 and had to give up my teaching career as a result. It's been a long, hard road but I'm learning to live this new life and to appreciate some of the things that at first were so devastating to me, like the isolation.
ReplyDeleteI look forward to reading more of your posts.
My best,
Toni
Thanks for your comments Toni. I'm looking fwd to reading your blog and getting to know you. :)
ReplyDelete