Invisible Illness Week: 30 Things Meme

This is a tardy comment, but I only just noticed this post now... in March my rheumatologist finally caved and told me he was calling my problems "fibromylagia". I wasn't thrilled about that because to me it means, they just don't know, but they'll give you this general label that most people take to mean "yeah, nothing's really wrong with you."

I am currently on sick leave (though also on strike, so I'm in a weird limbo) because my pain has gotten so much worse. I don't want to not be able to work. The pain issues have been going on for 5 years now and I'm tired of it. I get the fatigue too, but the doc won't say it's anything other than my not sleeping well (which isn't always true). I didn't realize this was considered an invisible illness. I suppose I'll look up more stuff about it. I have been avoiding that because I don't want to admit that I have something that people consider fake. :(

Thank you, Maranda. You speak for so many of us. My 30 yr old daughter was diagnosed with fibro when she was 8. Invisible illnesses are so hard for all of us but especially for a child. Between me and my 4 children we have 1 case of fibro, 1 significant hearing loss, 1 major depressive disorder, 1 asthmatic, 2 chronic fatigues, 2 with Morton's neuroma, 2 with migraines, 2 agoraphobics, & 3 bi-polars (obviously each of us have more than one thing) and the hardest thing to deal with of all? People who tell us "if you just forgot about your problems and would do something for someone else you would feel so much better." (how do they know we don't ?) and I cried the first time I met a stranger who understood it takes all my energy for the day some days just to get out of bed and get clothes on.

Carol

Be kind. Everyone is fighting a hard battle. Plato

Dear Maranda,

Oh Lody girl you are singing my song. Almost everything you listed is exactly what I am going through! My invisible illness? Parkinson's. I can see you saying, "Huh?" I thought I would add to your list and see if this happened to you as well.

When I was diagnosed 5 years ago at the age of 44, my friends were concerned, and said all the right things, what can we do ,bla,bla,bla. But it became very clear, very quickly that their ability to deal with my disease was wearing thin. All the things that you've been dealing with, not being able to do and go like you once did, the slow morning routine, the fatigue, all of it began to wear on their nerves. Oh and mine too! So I would add one more thing to your list.

101. Take out the garbage-remove yourself from those around you who do not understand and do not WANT to understand or accept your limitations!! I have spent years and tears trying to keep up with all of my old friends only to find out that they felt "funny" around me anyway. Surround yourself with people that love and support you no matter what. Hopefully these will be the friends that you can lean on and ask for help! Hang in there, we're listening!!!

To learn of your story, so different from mine but also surprisingly similar, is touching and inspiring. I too have FMS (plus a host of other issues) and can no longer work, despite 4-5 attempts to return. And life is often quickly gobbled up by much needed sleep. The quality of a day is measured by microscopic achievements and tiny victories that only those who know and love us best can appreciate.

I have fibro and a lot of the points I know. I missed 4 months work. Hope to be able to live "normal" in the future

My mother has fibro and you echoed here many of the things she has said about the illness.

I am a type 1 diabetic and although I missed the official week, I blogged the meme anyway: http://wp.me/p1cEqI-75

You are truly an inspiration to me!! I have had fibromyalgia, CFS, arthritis and colon issues for about 8 years!! I fully intend to follow your blog, for my daily uplifting that I so need!!

So true. I also have an invisible illness, Sarcoidosis, and always have to explain myself. I don't look sick, so I can't really be sick...

Please research LDN, Low Dose Naltrexone for fibromyalgia. Many of us are getting tremendous relief. Look at the studies being done at Stanford University.

Here's my list! http://reflectionsbyrebekah.blogspot.com/2011/09/i...

I get migraines, among other invisible illnesses. Thanks for the thought-provoking, articulate post. I can identify with so much of what you say-- "my brain is fast; my body is slow," sometimes resenting needing to rest, pace myself, etc. But illness can be a teacher, too, and I admire you for recognizing that!

It is starting to come clear that all immune diseases may be cause by Lyme Disease.

I have met people that were very sick with MS and other thing but are know 98% cured. Using the Marshall Protocol medicine. I am starting soon.

Have you even been tested for Lyme Disease. There are different ones so be careful. The real one is around $400.00 .

This youtube link is a video called Under Our Skin.

http://www.youtube.com/watch?v=sxWgS0XLVqw

www.canlyme.com

bacteriality.com

www.marshallprotocol.com

Great list. I've had Crohn's disease and Celiac disease for 15 years. I was in my mid-20's when I first started getting sick. It is hard because people assume you feel fine unless you explain otherwise and you don't always want to explain because you don't want it to define who you are. Thanks for sharing this. I am so glad you can see the positives and the opportunities that do come with a chronic illness.

You expressed how so many of us feel. Thank you for being so open and sharing. I'm so sorry for all of your disappointments and difficult changes due to your chronic illness. But I so appreciate knowing that you truely understand how myself and others feel. May God bless you in a very special way!!!

Wow... your answers & mine were quite similar! I think it's very telling that so many of us who completed the meme mentioned that the one thing we can't live without are our computers. I can't imagine how lonely life with chronic illness must have been prior to the internet age.