Thursday, September 15, 2011

Invisible Illness Week - things you may not know about Fibromyalgia

Guess what? This week is Invisible Illness Week and here at Smart Fibro Chick I am going to be covering Fibromyalgia. I am covering bipolar at my blog Survivor and covering EDS at my blog Please Tape Me Back Together.

I've got quite a few invisible illnesses, other than EDS and fibromyalgia. My other invisible illnesses include: PCOS (Polycystic Ovarian Syndrome), Chronic pain, Epilepsy, TMJ Dysfunction, Bipolar, Migraines, Bruxism, IBS (Irritable Bowel Syndrome), SAD (Seasonal Affective Disorder), SI (Self-Injury), social anxiety, panic attacks, C-PTSD (Complex-Post-Traumatic Stress Disorder), and Hashimoto's Thyroiditis.

So, without further ado...

1. The illness I live with is: Fibromyalgia. It is also called fibro or FMS. It commonly occurs with ME/CFS, but it is not the same thing.

2. I was diagnosed with it in the year: 1996, my sophomore year of high school.

3. But I had symptoms since: childhood

4. The biggest adjustment I’ve had to make is: Loss of mobility and super high levels of pain from EDS and fibro.

5. Most people assume: That fibro is a “waste-basket” diagnosis, assigned to patients doctors can’t fix, don’t want to deal with, or who are hypochondriacs. That isn’t true. That really isn’t true. Ask a fibromyalgia sufferer in a flare if that is true. Stand back, though, because she will probably throw something at you. Fibromyalgia has diagnostic criteria that must be met in order to get the diagnosis. I will be covering these in a later blog.

6. The hardest part about mornings are: The pain and stiffness and that horrible unrested feeling. I never wake up feeling rested. This sounds dumb, but I didn’t know other people felt any different upon waking until recently.

7. My favorite medical TV show is: Scrubs. I used to watch House until they did the two part episode with House in the mental hospital. It gave me horrible flashbacks and I haven't watched House since.

8. A gadget I couldn’t live without is: My laptop-my connection to the outside world. I have a lot of fibro and spoonie friends on Twitter and Facebook. I couldn’t make it without these guys! Also, I have made some endearing friendships through snail mail. I can’t handwrite anymore from my EDS, so I also use my laptop to type out letters.

9. The hardest part about nights are: Trying to get comfortable when you hurt. There is no such thing as a comfortable position, and when you find that “almost comfortable” position, it only lasts a few minutes before it is incredibly uncomfortable again.

10. Each day I take __ pills & vitamins. (No comments, please) 27

11. Regarding alternative treatments I: Meditate, drink ginger tea for pain (I am right now!), had a friend do Reiki once, lots of vitamins (sublingual Vitamin B Complex does wonders for energy), herbal tea for relaxation, and yoga when I can (which isn’t often).

12. If I had to choose between an invisible illness or visible I would choose: Invisible illness, as long as I got rid of my bipolar.

13. Regarding working and career: I went on disability in 2000. I cannot work from my bipolar, EDS, C-PTSD, epilepsy, and fibro.

14. People would be surprised to know: How incredibly bad fibro hurts and how much fatigue it causes!

15. The hardest thing to accept about my new reality has been: The uncertainty from minute to minute. I may have been at a 7 (out of 10 on the pain scale) all day, then BAM, I suddenly hit 9. When I hit 10 I usually am screaming, delirious, and/or passing out. My “normal” is a 7/10 on the 1-10 pain scale.

16. Something I never thought I could do with my illness that I did was: Go back to grad school.

17. The commercials about my illness: Are a joke! They make it look like you pop a pill of Lyrica or whatever they are advertising, and then you are “all better.” I’ve taken Lyrica before. You know what it did to me? It made me fat, but still in pain, and still with loads of fatigue. (Lyrica’s #1 side effect is weight gain, for those of you who didn’t know.)

18. Something I really miss doing since I was diagnosed is: planning things. I can’t plan anything because I never know what I will feel like at that time.

19. It was really hard to have to give up: Planning. I’m a planner. When I say I’m a planner I mean it. When I was 10 years old I sat down with the closest community college’s schedule and made out my college schedule. That was after I made out my high school schedule, too. Remember, I was 10. Of course, it didn’t turn out like I planned, but that is beside the point.

20. A new hobby I have taken up since my diagnosis is: Since I’ve had it since childhood doesn’t any hobby I have go here? I like to write, scrapbook, pen pal, blog, cross-stitch, and read.

21. If I could have one day of feeling normal again I would: Go hiking in my cute black boots I found with Darla.

22. My illness has taught me: To spend my time creatively instead of moping. I am rarely bored.

23. Want to know a secret? I feel horrible about this, and I've only admitted it to DH, but I used to say that people with fibro were overplaying their pain. Even though I was in constant pain, I wasn’t disabled from it. I thought it was the same for everyone. I wish I never thought something like that. Maybe that’s why I hurt so badly now, perhaps it's from what I said then, when I just didn't understand what real pain was. The fibro and EDS didn’t disable me until around the time I met DH.

24. But I love it when people: say “Oh you have fibro? I heard that really hurts. Is there anything I can do for you today?” I hate it when people act like fibro isn’t real. I got into a Twitter altercation with a famous Star Trek actor (I didn’t know who he was at the time) because he made fun of people with fibro on Fibro & ME/CFS Awareness Day 2010. I actually got so many threats from Trekkies after that that I had to temporarily protect all my tweets for a week or so. There were so many threats it seriously freaked me out.

25. My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day, and I'm thirsty anyway, so bring on the rain." ~JoDee Messina

26. When someone is diagnosed I’d like to tell them: Educate yourself on information! There is no cure for fibro, so if a product, book, e-book, or anything else, promises to cure it, they are lying. Read all you can on fibro. Make friends with other people experiencing the same thing. If something sounds too good to be true, it probably is. There are a plethora of snake oil cures out there, begging to cheat the next desperate person, who is willing to do anything to make the pain stop. Have I tried any snake oil cures when I was desperate and in severe pain? Yes, I have. Even though I knew better, I still did it. I ended up having an allergic reaction to it, but thankfully it wasn’t a severe reaction.

27. Something that has surprised me about living with an illness is: Most people just don’t care. For instance, DH and I both have epilepsy. One day we were over at a lady’s house and he just fell over and started seizing. What did she do? She got up and walked out of the room to get a glass of water, even stepping over him! People just don’t care. I had to cradle his head in my arms. If she’d asked if she could do anything I would have asked for a pillow or couch cushion, but she didn’t even do that. What if I wasn’t there? He can only hit his head so many times before something really bad happens.

28. The nicest thing someone did for me when I wasn’t feeling well was: When Jim surprised me with my bear Eliza wearing one of my old ACE bandages because she was “sick,” too. It was so cute.

29. I’m involved with Invisible Illness Week because: I want to educate others on fibro and let other fibromites know you are never alone in this fight!

30. The fact that you read this list makes me feel: Thankful! Thank you for reading my blog!

Throughout the week I will be doing blogs on Fibromyalgia for Invisible Illness Week.

So you don’t miss a single entry this Invisible Illness Awareness Week and if you haven’t already; I’d like to remind you to subscribe to my blog, through Google Friend Connect, Networked Blogs, RSS feed, or through email.

1 comment:

  1. Thank you for sharing this! I also suffer from fibromyalgia so I can really relate to what you said. I found ways of dealing with my fibromyalgia with techniques from Hope this helps!


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