Invisible Illness Week has posted a meme, which I think is wonderful.
It looks like a very comprehensive list of questions, so I thought I'd take part!
Here are my answers:
1. The illness I live with is:
ME/CFS (Myalgic Enchephalomyelitis / Chronic Fatigue Syndrome) and Fibromyalgia
2. I was diagnosed with it in the year:
2008
3. But I had symptoms since:
June 9, 2007 (and I can give you the ext time it hit as well)
4. The biggest adjustment I’ve had to make is:
Everything. I've had to re-invent myself by examining every single part of who I am.
5. Most people assume:
That I am fine. I tweak my life so much to make it possible to attend as much as possible, take part in as much as possible and do as much as possible while keeping in the confines of my illnesses. Most people think see me out, think I am fine and assume I can do as much as they can.
6. The hardest part about mornings are:
Just about everything. Before chronic illness struck, I was a morning person. In my head, I am *still* a morning person but my body has different ideas! For the first few years after diagnosis, and even still to some extent, it was very difficult thinking one way but having to be another way. Like a constant battle going on between my brain and my body: "Get up!" "Time to get going!!" vs "Too much pain" "Can't move" "Maybe Later" "Shut up!" ..... you get the picture.
I have learned to compromise this by finding a way that works for me. I still wake up early (that morning person within is alive and well), but now enjoy my mornings. Sipping my coffee, watching the sunrise up over the ocean, checking my Facebook, Reading and writing emails from/to friends. If I don't feel like doing it.... or am unable.... I don't! Such a freeing feeling it is!!
7. My favorite medical TV show is:
I don't watch tv.
8. A gadget I couldn’t live without is:
My laptop.
9. The hardest part about nights are:
Staying awake. I tend to lay down in the early evening because it's so comfortable and next thing I know my husband is waking me up at 10 or 11 to get ready for bed. Then, because I've slept for awhile, I am unable to get back to sleep.
10. Each day I take __ pills & vitamins. (No comments, please)
I've only found relief from alternative methods. I take several supplements and vitamins, not every day all year long but as needed. They include, magnesium, CoQ10, B Vitamins, Vitamin C, Vitamin D, Licorice Root, Licorice Root, Iodine (topically applied)
11. Regarding alternative treatments I:
I am very thankful for traditional medicine where I received a quick diagnosis (relatively speaking). That's where the relief ended though as the diagnosing Dr. told me at the same time he delivered my diagnosis, "There is nothing further we can do for you". Thankfully, I did not accept that as absolute truth and stop there. I researched, talked to others and visited several alternative practitioners.
12. If I had to choose between an invisible illness or visible I would choose:
Visible for sure. At least then it would be taken seriously!
13. Regarding working and career:
I already had three children who I was homeschooling, plus I ran a home-based business. When I became ill, I still had those children and homeschooling to take care of. I cut back on my home-based business for awhile and our homeschooling year suffered a bit.
14. People would be surprised to know:
How much pain I endure every single day and how ill I really am.
15. The hardest thing to accept about my new reality has been:
I have to carefully plan out my days. I used to think my days were planned, but now every.single.detail of every single day must be planned.
16. Something I never thought I could do with my illness that I did was:
Have some sort of a life beyond being bedridden and brain-fogged.
17. The commercials about my illness:
Hmmm...don't recall seeing any commercials about my illnesses.
18. Something I really miss doing since I was diagnosed is:
Having lots of energy, being able to put in a full day and having my energy fully replenished by a night's sleep.
19. It was really hard to have to give up:
Being active.
20. A new hobby I have taken up since my diagnosis is:
I haven't taken up anything new.
21. If I could have one day of feeling normal again I would:
Go out for the day --- the whole day. Shopping and lunch with no worries about pre-planning the day.
22. My illness has taught me:
a) Patience
b) There is always hope
23. Want to know a secret? One thing people say that gets under my skin is:
"I get tired too but I have to push on through and can't use that as an excuse"
24. But I love it when people:
Ask how my week has been/how I've been feeling
25. My favorite motto, scripture, quote that gets me through tough times is:
I have several depending on the situation.
26. When someone is diagnosed I’d like to tell them:
There will be a lot of negative, doubting, dismissing type of comments -- ignore them and don't waste your precious energy on such people. Take it one day at a time. Don't give up!
27. Something that has surprised me about living with an illness is:
Most surprising -- there have been some positives! I am much more laid back and do not stress out nearly as much as I used to.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I do not have any support other than my immediate family. They have been great in supporting me through every stage of this journey and without them, I am unsure what I would have done.
29. I’m involved with Invisible Illness Week because:
It's great to support illnesses that go unnoticed.
30. The fact that you read this list makes me feel:
Wonderful! Thanks for caring enough to read.
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