30 Things About My Invisible Illness You May Not Know
It's been quite a long time since I've participated in a meme, but this one is in honor of National Invisible Illness Week, which is from September 14-18. There's a FREE five-day virtual conference with 20 speakers next week. Check out more about it at InvisibleIllness.com.
Now, learn a little more about me and what "they" say I have. (Some of you know exactly what I mean!) Note: This is a little long so please hang in there. I even learned a few things about myself.
1. The illness I live with is: Actually, illnesses. Lupus and fibromyalgia
2. I was diagnosed with it in the year: 2009 and 2008
3. But I had symptoms since: Around 1995
4. The biggest adjustment I’ve had to make is: Is realize how easy it is to hurt myself.
5. Most people assume: I assume most assume that I am making it up.
6. The hardest part about mornings are: Waking up to pain, tingling, stiffness, headaches and exhaustion.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My laptop... no, my cell phone! Neither.
9. The hardest part about nights are: The tingling in my lower legs and my wrists and hands; hardly getting a complete night's sleep and doing all the nighttime tasks that are required of a parent: homework, baths, dinner, bedtime, etc., in addition to trying to get some more working in.
10. Each day I take __ pills & vitamins. (No comments, please) About 10 total.
11. Regarding alternative treatments I: hope that I can afford to get herbs and some other natural alternatives as well as incorporate more yoga and some water aerobics to make the symptoms more bearable.
12. If I had to choose between an invisible illness or visible I would choose: Now, what in the world do you say to that. I would say neither!
13. Regarding working and career: It's tough to work when you're in pain, lose focus 'cause of meds and symptoms and deal with the emotions of it all. Working from home is flexible, but stressful when relying on providing for yourself and your children. Although I love what I do, the pain and discomfort from sitting for more than 20 minutes or so is discouraging.
14. People would be surprised to know: I often have severe "attacks" where my body is weak, in more pain, sometimes my hands are swollen, my limbs are tingling and it sometimes takes days to recuperate.
15. The hardest thing to accept about my new reality has been: that when I do try to do something active that I've always loved to do I am most likely in pain for the rest of the day.
16. Something I never thought I could do with my illness that I did was: Hmmm??
17. The commercials about my illness: The only commercial I've seen is for fibromyalgia and it's pretty accurate.
18. Something I really miss doing since I was diagnosed is: I miss NOT going to the doctor.
19. It was really hard to have to give up: So far I haven't given up too much, but I am going to have to change my food intake and whatnot soon.
20. A new hobby I have taken up since my diagnosis is: Nothing new yet.
21. If I could have one day of feeling normal again I would:
22. My illness has taught me: to try to live one day at a time.
23. Want to know a secret? One thing people say that gets under my skin is: Let me know if you need anything.
24. But I love it when people: Just show up to help. (Hasn't happened though.)
25. My favorite motto, scripture, quote that gets me through tough times is: Go confidently in the direction of your dreams. Live the life you've imagined. - Henry David Thoreau
26. When someone is diagnosed I’d like to tell them: Surround yourself with uplifting and helpful people.
27. Something that has surprised me about living with an illness is: Let me add something to that... Something that has surprised me about living with an INVISIBLE illness is that it doesn't change how other people live their lives unless they live with you. Everyone will move on whether you need help or not.
28. The nicest thing someone did for me when I wasn’t feeling well was: This is a tough one... my oldest daughter has done so much for me when I wasn't feeling well and when hubby and I were together he was pretty good when I wasn't feeling well... since then probably the nicest thing anyone has done is call me.
29. I’m involved with Invisible Illness Week because: it's one of the few things that I've found that's supportive and maybe it'll get the word out to non-illness sufferers that there could be someone in their life that doesn't look sick, but really needs more emotional, physical and spiritual support. Just because I smile doesn't mean that things are going well.
30. The fact that you read this list makes me feel: like you really care about me.
Embrace someone who has an invisible illness.
Wednesday, September 9, 2009
30 Things...
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6 appreciated remarks:
I would love to give you a hug right now.
I have pain in my hips. It is better now that I have a great chiropractor, but there are still times when the pain is severe enough to interfere with daily tasks. (My house is a complete disaster most of the time because picking up toys can be quite excruciating.)
I know if I could lose weight, a lot of the problems would get better. My body doesn't seem to want to cooperate with me on that, though.
Very informative, thank you. Thank you also for letting us know a little more about what you contend with on a daily basis. I admire the way you handle it and keep everything going.
Your babies are wonderfully blessed, you could be wallowing in self-pity but you're not, you're doing what you can to give them normal (what's normal?) lives. I can always see joy and happiness on their little faces.
You are in my thoughts and prayers. (((((HUGS from Leona)))))
Petula, this is such a great post! It's things like this that really help people in similar situations not feel so alone. What a powerful way to raise awareness. Wishing you all the best!
I agree with everything you said! And it sucks huge!!! VERY HUGE!!! Love you mucho and it'll all work out, maybe slowly than we'd like, but it will. ;)
wow...you shared some amazing things here petula...(this is where i'd give you big giant *HUGZ* if we were face to face. so if you could just feel a big giant hug from me right now, as you're reading this, you will know that i care about you and consider you my friend.)
you've had symptoms for awhile, but it is still pretty new as to what you have. you have adjustments that need to be made and you are working on those. that takes some time. i think you are doing a pretty good job of that.
there are people that don't believe you? try not to fret about those people, what's important is YOU.
living with the pain has got to be very exhausting for you. is there someone who could come in for an hour or so, so you could just relax? maybe your daughter knows someone.
just a few posts ago you wrote about changes and the road less traveled. i believe you are going to be very successful with that, and i think that will help you with this also.
things are going to be all right. it will be hard at times to remain positive, i'm sure, but i don't see you as one who will choose to stop working on that. "go confidently in the direction of your dreams. live the life you've imagined!" (that is a great quote ;) )
thank you my friend for sharing this. much love to you!
That was really interesting, Petula! And #25 is a quote I have pinned up right in front of my work area. I love that quote!
I have a friend with a different form of invisible illness, and I've learned a lot from her on assumptions people make. Like making comments when she parks in a handicap spot because they ASSUME from looking at her that she's perfectly fine. I'll never do something like that again!
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