Invisible Illness Meme
My Mom subscribes to Rest Ministries - a website for people with Invisible Illnesses, and she emailed me about this post.
1. The illness I live with is: Fibromyalgia, Gluten and Soy Intolerance. Possibly Lyme. I suspect others that haven't been diagnosed.
2. I was diagnosed with it in the year: Fibromyalgia in Early 1997 or 1998... I just remember that it was cold but not winter so it had to have been in the Spring and I was 15 or 16. Gluten in January of 2008 and I discovered the soy on my own in the fall of 2010. I would say I have Celiac but I wasn't tested - I quit eating gluten after talking to a nutritionalist who said that if I felt better after not eating it for two weeks then I have it.
3. But I had symptoms since: I was at least 13 for the Fibromyalgia because that's when I started waking up EXHAUSTED after HOURS of sleep and I ached ALL THE TIME, but I suspect I had other symptoms long before that... it's hard to remember a lot of those kinds of details about my childhood before my teens, though I remember being sick a lot with things like pneumonia, strep throat, and I got chicken pox twice. i got bit by a tick when I was 6 and was treated for it, but I don't think I was given the treatment for as long as I should have been so I've always wondered about that too.
4. The biggest adjustment I’ve had to make is: Well, everything... but removing the gluten and later on the soy from my diet was a major lifestyle adjustment for the whole family... my Fibromyalgia adjustments were more of a gradual day to day thing... sometimes it wasn't until years later that I would realize that they weren't adjustments normal people would make. For example, I don't make decisions about doing something because it's a choice between whether or not I want to do it but instead it's a choice between whether I can or can't do it.
5. Most people assume: That if I simply just put my mind to it a little more I'd be able to do anything. Over and over I have been told that I am not (doing) enough... they may not say it in so many words but that's what it comes down to.
6. The hardest part about mornings are: Talking myself out of bed and then waiting hours for the brain fog to clear and the stiffness to let up. Actually, everything is the hardest, basically.
7. My favorite medical TV show is: I don't watch tv. Does Doctor Who count? It has the word "doctor" in it after all. ;) (I watch it through iTunes)
8. A gadget I couldn’t live without is: my iPhone and my computer. They're my connection to my friends and the world and help keep my brain active. My microwable heat pillows are also something I can't live without... although sometimes I think the weight of them causes me to be in more pain.
9. The hardest part about nights are: not sleeping... whether that's having troubles falling asleep, staying asleep, getting any sleep at all... knowing that I'll wake up tired and that I didn't get as much done as I wanted to the day before. It's really hard when I can't sleep and know I have to be up by a certain time - it makes it even harder to fall asleep.
10. Each day I take __ pills & vitamins. (No comments, please) I've had a really hard time responding well to medicines and vitamins but recently I finally found a brand of adult chewy vitamins (Slice of Life) that seem to be working for me, so I take 3 vitamins 2 times a day. It's not much, but it's better than when I'm not taking anything.
11. Regarding alternative treatments I: wish they would be covered by insurance. I have worked with a chiropractor but that only worked so well... they pretty much told me I wasn't really doing signifigantly better so it was kind of pointless for them to continue and then my insurance ran out. I had a massage last year that worked well, but I haven't been able to afford to go back. I've also have had some success with Reiki, which is something I've known about for a while but got into this year and actually helped quite a bit before the whether temperatures got extreme and I got out of practice with it.
12. If I had to choose between an invisible illness or visible I would choose: I don't know... even though I have an invisible illness - it's visible enough - when I walk so slow and hunched over from being in pain, I look completely shattered by exhaustion, I have difficulties in expressing myself clearly because I can't find the words I want to say...
13. Regarding working and career: It would be nice to have the energy to have one.
14. People would be surprised to know: How having an invisible illness makes you feel worthless and undesirable since you can't perform to their expectations of you. It makes you feel ashamed. It makes you feel like people think you're lazy or that you're making it up and that it's all in your head.
15. The hardest thing to accept about my new reality has been: Not being able to do what I want to do... from big things like going to college and holding a job to daily things like writing emails/blog posts/comment or going out of the house.
16. Something I never thought I could do with my illness that I did was: bellydance classes... now granted, if I overdid it I paid for it the rest of the week/month/season, but if I was gentle and paced myself well (and took tylenol before classes) I found it was something that made me feel good about myself.
17. The commercials about my illness: from what I remember of commercials they give a false portrayal of what a persons life is like and so people think it's not that bad.
18. Something I really miss doing since I was diagnosed is: being active and having hopes and dreams for the future.
19. It was really hard to have to give up: being active and having hopes and dreams for the future.
20. A new hobby I have taken up since my diagnosis is: Making graphics on my computer, but even that I rarely have the energy to do anymore.
21. If I could have one day of feeling normal again I would: I have no idea what it's like to feel "normal" so I have no clue.
22. My illness has taught me: to live my life day by day (or some days moment by moment)... don't waste energy on "tomorrow" when today has plenty of it's own challenges. Living day by day/moment by moment helps me to focus on what I can do instead of what I can't do.
23. Want to know a secret? One thing people say that gets under my skin is:
25. My favorite motto, scripture, quote that gets me through tough times is:
27. Something that has surprised me about living with an illness is: Physically I may be weak, but I am so much stronger inside than I even realize sometimes.
28. The nicest thing someone did for me when I wasn’t feeling well was: Accepted me as I am.
29. I’m involved with Invisible Illness Week because: This is the first I've heard of it... but awareness is needed. Remember that quote that says something along the lines of "Be kind. Everyone you meet is facing a hard battle." a never ending battle is often what it feels like for someone with a chronic invisible illness between dealing with their illness and the people who don't "get it" and a little kindness and understanding can go a long way.
30. The fact that you read this list makes me feel: Surprised. This is a long post to read.
1. The illness I live with is: Fibromyalgia, Gluten and Soy Intolerance. Possibly Lyme. I suspect others that haven't been diagnosed.
2. I was diagnosed with it in the year: Fibromyalgia in Early 1997 or 1998... I just remember that it was cold but not winter so it had to have been in the Spring and I was 15 or 16. Gluten in January of 2008 and I discovered the soy on my own in the fall of 2010. I would say I have Celiac but I wasn't tested - I quit eating gluten after talking to a nutritionalist who said that if I felt better after not eating it for two weeks then I have it.
3. But I had symptoms since: I was at least 13 for the Fibromyalgia because that's when I started waking up EXHAUSTED after HOURS of sleep and I ached ALL THE TIME, but I suspect I had other symptoms long before that... it's hard to remember a lot of those kinds of details about my childhood before my teens, though I remember being sick a lot with things like pneumonia, strep throat, and I got chicken pox twice. i got bit by a tick when I was 6 and was treated for it, but I don't think I was given the treatment for as long as I should have been so I've always wondered about that too.
4. The biggest adjustment I’ve had to make is: Well, everything... but removing the gluten and later on the soy from my diet was a major lifestyle adjustment for the whole family... my Fibromyalgia adjustments were more of a gradual day to day thing... sometimes it wasn't until years later that I would realize that they weren't adjustments normal people would make. For example, I don't make decisions about doing something because it's a choice between whether or not I want to do it but instead it's a choice between whether I can or can't do it.
5. Most people assume: That if I simply just put my mind to it a little more I'd be able to do anything. Over and over I have been told that I am not (doing) enough... they may not say it in so many words but that's what it comes down to.
6. The hardest part about mornings are: Talking myself out of bed and then waiting hours for the brain fog to clear and the stiffness to let up. Actually, everything is the hardest, basically.
7. My favorite medical TV show is: I don't watch tv. Does Doctor Who count? It has the word "doctor" in it after all. ;) (I watch it through iTunes)
8. A gadget I couldn’t live without is: my iPhone and my computer. They're my connection to my friends and the world and help keep my brain active. My microwable heat pillows are also something I can't live without... although sometimes I think the weight of them causes me to be in more pain.
9. The hardest part about nights are: not sleeping... whether that's having troubles falling asleep, staying asleep, getting any sleep at all... knowing that I'll wake up tired and that I didn't get as much done as I wanted to the day before. It's really hard when I can't sleep and know I have to be up by a certain time - it makes it even harder to fall asleep.
10. Each day I take __ pills & vitamins. (No comments, please) I've had a really hard time responding well to medicines and vitamins but recently I finally found a brand of adult chewy vitamins (Slice of Life) that seem to be working for me, so I take 3 vitamins 2 times a day. It's not much, but it's better than when I'm not taking anything.
11. Regarding alternative treatments I: wish they would be covered by insurance. I have worked with a chiropractor but that only worked so well... they pretty much told me I wasn't really doing signifigantly better so it was kind of pointless for them to continue and then my insurance ran out. I had a massage last year that worked well, but I haven't been able to afford to go back. I've also have had some success with Reiki, which is something I've known about for a while but got into this year and actually helped quite a bit before the whether temperatures got extreme and I got out of practice with it.
12. If I had to choose between an invisible illness or visible I would choose: I don't know... even though I have an invisible illness - it's visible enough - when I walk so slow and hunched over from being in pain, I look completely shattered by exhaustion, I have difficulties in expressing myself clearly because I can't find the words I want to say...
13. Regarding working and career: It would be nice to have the energy to have one.
14. People would be surprised to know: How having an invisible illness makes you feel worthless and undesirable since you can't perform to their expectations of you. It makes you feel ashamed. It makes you feel like people think you're lazy or that you're making it up and that it's all in your head.
15. The hardest thing to accept about my new reality has been: Not being able to do what I want to do... from big things like going to college and holding a job to daily things like writing emails/blog posts/comment or going out of the house.
16. Something I never thought I could do with my illness that I did was: bellydance classes... now granted, if I overdid it I paid for it the rest of the week/month/season, but if I was gentle and paced myself well (and took tylenol before classes) I found it was something that made me feel good about myself.
17. The commercials about my illness: from what I remember of commercials they give a false portrayal of what a persons life is like and so people think it's not that bad.
18. Something I really miss doing since I was diagnosed is: being active and having hopes and dreams for the future.
19. It was really hard to have to give up: being active and having hopes and dreams for the future.
20. A new hobby I have taken up since my diagnosis is: Making graphics on my computer, but even that I rarely have the energy to do anymore.
21. If I could have one day of feeling normal again I would: I have no idea what it's like to feel "normal" so I have no clue.
22. My illness has taught me: to live my life day by day (or some days moment by moment)... don't waste energy on "tomorrow" when today has plenty of it's own challenges. Living day by day/moment by moment helps me to focus on what I can do instead of what I can't do.
23. Want to know a secret? One thing people say that gets under my skin is:
- Telling me to get a job, exercise, drink more water, go outside, pray more, trust in God, etc. Don't you know I would be doing that if I could or am already doing that!
- It also gets under my skin when people talk to me about their hot flashes and arthritis and say things along the lines of "Don't worry! That's something you won't have to deal with until many years from now." when I've already been experiencing it for years.
- When they ask you "How are you?" but you know they don't really mean it - it's just that mindless question they ask without expecting anything other than "great!" because they're just trying to "make conversation" - and you know they don't really want to hear about how you didn't get any sleep last night and had 3 bad stomach aches and your entire body hurts and you feel like you could pee again even though you just used the bathroom a minute ago so you answer "okay" and they say "Just okay?"
25. My favorite motto, scripture, quote that gets me through tough times is:
- "There is always hope." -Aragorn (Lord of the Rings)
- "The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things; but vice-versa, the bad things don’t necessarily spoil the good things or make them unimportant." -Doctor Who: Vincent and the Doctor
- Hang on to hope... it sometimes might be only a broken thread but cling to it... it won't make it any easier to live with a lifelong illness but if you cling to it, hope will bring you through on those days when you're barely hanging on by a thread, and there will be days like that.
- Don't expect people to "get it" - it's very VERY rare that they do.
27. Something that has surprised me about living with an illness is: Physically I may be weak, but I am so much stronger inside than I even realize sometimes.
28. The nicest thing someone did for me when I wasn’t feeling well was: Accepted me as I am.
29. I’m involved with Invisible Illness Week because: This is the first I've heard of it... but awareness is needed. Remember that quote that says something along the lines of "Be kind. Everyone you meet is facing a hard battle." a never ending battle is often what it feels like for someone with a chronic invisible illness between dealing with their illness and the people who don't "get it" and a little kindness and understanding can go a long way.
30. The fact that you read this list makes me feel: Surprised. This is a long post to read.