It was invisible chronic illness awareness week! I didn't even knew we had one but I landed on an excellent blog and stole this idea from her to contribute to the 'awareness' of invisible chronic illness. ;-)
The week is already over but I thought it still would be fun to post the questions so you all get to know me better. ;-)
Please send me you link if you decide to do your own. The list can be downloaded/copied here.
If it's not readable the cute image below says 'It's All In Your Head' . ;-)
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Myalgic_Encephalomyelitis: MYALGIC(muscle pain) + ENCEPHALO(relating to the brain) + MYEL(relating to the spinal cord) + ITIS(inflammation) = MYALGIC ENCEPHALOMYELITIS (brain and spinal cord inflammation with muscle pain)
2. I was diagnosed with it in the year:
1985
3. But I had symptoms since:
1971
4. The biggest adjustment I’ve had to make is:
Giving up my independence, no more driving, shopping, showering, getting dressed, putting on my shoes by myself.
5. Most people assume:
That I'm just a fat person who needs a wheelchair, if only she lost the weight she could walk if she wanted to.
6. The hardest part about mornings are:
Waking up and realizing it's another day in solitude ahead of me.
7. My favorite medical TV show is:
huh?
8. A gadget I couldn’t live without is:
My iPhone
9. The hardest part about nights are:
The pain and loneliness
10. Each day I take _ pills/vitamins. (No comments, please)
54
11. Regarding alternative treatments I:
Use a combination of Western and alternative, whatever works I will use/try it
12. If I had to choose between an invisible illness or visible I would choose:
Visible
13. Regarding working and career:
There are more important things in life that working and a career, like health, friends and enjoying life.
14. People would be surprised to know:
I'm an introvert.
15. The hardest thing to accept about my new reality has been:
The isolation and giving up my independence.
16. Something I never thought I could do with my illness that I did was:
Be assertive and become a bitch if the need arises.
17. The commercials about my illness:
None existent.
18. Something I really miss doing since I was diagnosed is:
Traveling.
19. It was really hard to have to give up:
Walking/hiking, dancing, nights out.
20. A new hobby I have taken up since my diagnosis is:
Designing prayer/meditation beads. Necklaces and bracelets
21. If I could have one day of feeling normal again I would:
Travel to the Netherlands and visit my daughter.
22. My illness has taught me:
How many friends and family I have and that in the end and when push comes to shove, you're alone.
23. Want to know a secret? One thing people say that gets under my skin is:
I am also tired sometimes, have you tried ______ treatment/supplement/pill/book/diet? It helped me a lot.
24. But I love it when people:
Do things for me without asking.
25. My favorite motto, scripture, quote that gets me through tough times is:
Risk more than others think is safe, care more than others think is wise, dream more than others think is practical, expect more than others think is possible
26. When someone is diagnosed I’d like to tell them:
Read, research and read, read, read as much as possible about your illness and don't gather a lot of physicians around you who do not communicate with each other. If possible stick to just 1.
27. Something that has surprised me about living with an illness is:
The stigma it has.
28. The nicest thing someone did for me when I wasn’t feeling well was:
A friend took care of the pups I had in rescue at that time when I crashed.
29. I’m involved with Invisible Illness Week because:
The stigma about invisible and chronic illness need to be removed and become visible!
30. The fact that you read this list makes me feel:
Not so alone and I you have an invisible illness I hope you also fill out and post the questionnaire!
Find out more about National Invisible Chronic Illness Awareness Week http://www.invisibleillness.com
The week is already over but I thought it still would be fun to post the questions so you all get to know me better. ;-)
Please send me you link if you decide to do your own. The list can be downloaded/copied here.
If it's not readable the cute image below says 'It's All In Your Head' . ;-)
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Myalgic_Encephalomyelitis: MYALGIC(muscle pain) + ENCEPHALO(relating to the brain) + MYEL(relating to the spinal cord) + ITIS(inflammation) = MYALGIC ENCEPHALOMYELITIS (brain and spinal cord inflammation with muscle pain)
2. I was diagnosed with it in the year:
1985
3. But I had symptoms since:
1971
4. The biggest adjustment I’ve had to make is:
Giving up my independence, no more driving, shopping, showering, getting dressed, putting on my shoes by myself.
5. Most people assume:
That I'm just a fat person who needs a wheelchair, if only she lost the weight she could walk if she wanted to.
6. The hardest part about mornings are:
Waking up and realizing it's another day in solitude ahead of me.
7. My favorite medical TV show is:
huh?
8. A gadget I couldn’t live without is:
My iPhone
9. The hardest part about nights are:
The pain and loneliness
10. Each day I take _ pills/vitamins. (No comments, please)
54
11. Regarding alternative treatments I:
Use a combination of Western and alternative, whatever works I will use/try it
12. If I had to choose between an invisible illness or visible I would choose:
Visible
13. Regarding working and career:
There are more important things in life that working and a career, like health, friends and enjoying life.
14. People would be surprised to know:
I'm an introvert.
15. The hardest thing to accept about my new reality has been:
The isolation and giving up my independence.
16. Something I never thought I could do with my illness that I did was:
Be assertive and become a bitch if the need arises.
17. The commercials about my illness:
None existent.
18. Something I really miss doing since I was diagnosed is:
Traveling.
19. It was really hard to have to give up:
Walking/hiking, dancing, nights out.
20. A new hobby I have taken up since my diagnosis is:
Designing prayer/meditation beads. Necklaces and bracelets
21. If I could have one day of feeling normal again I would:
Travel to the Netherlands and visit my daughter.
22. My illness has taught me:
How many friends and family I have and that in the end and when push comes to shove, you're alone.
23. Want to know a secret? One thing people say that gets under my skin is:
I am also tired sometimes, have you tried ______ treatment/supplement/pill/book/diet? It helped me a lot.
24. But I love it when people:
Do things for me without asking.
25. My favorite motto, scripture, quote that gets me through tough times is:
Risk more than others think is safe, care more than others think is wise, dream more than others think is practical, expect more than others think is possible
26. When someone is diagnosed I’d like to tell them:
Read, research and read, read, read as much as possible about your illness and don't gather a lot of physicians around you who do not communicate with each other. If possible stick to just 1.
27. Something that has surprised me about living with an illness is:
The stigma it has.
28. The nicest thing someone did for me when I wasn’t feeling well was:
A friend took care of the pups I had in rescue at that time when I crashed.
29. I’m involved with Invisible Illness Week because:
The stigma about invisible and chronic illness need to be removed and become visible!
30. The fact that you read this list makes me feel:
Not so alone and I you have an invisible illness I hope you also fill out and post the questionnaire!
Find out more about National Invisible Chronic Illness Awareness Week http://www.invisibleillness.com
Hier word ik even heel stil van .....
Meer heb ik even niet te zeggen.
Big hug!
Monique
Great post Tink, it helped me to know you better. Glad you shared it. Had my first pain free day in 3 years today.... 2007pams
Just great - thanks. Glad to find your blog.
Tink, thank you for posting this. I can very much relate to a lot of what you said.
I posted my own responses here: http://greybeh.livejournal.com/2009/10/17/
(It's Heather Jacoby from Fibrom-l & Facebook)