(no subject)

[rootofnewt]

more CFIDS. It's a letter written by Peggy Munson, a writer and PWC. dahliablue gets my thanks for the link.

I'm considered high-functioning for a CFIDS patient. I can generally get up to boil water. Sometimes I need to sit back down, sometimes I can continue on and do some dishes or make dinner. I can walk around a store, but I might need to lay down or rest the rest of the day. I can even go for long walks, go out to restaurants, and go to parties, but I'm left with swollen glands, a sore throat, and extreme fatigue for the next few days or weeks. I'm not bedbound. I can use the toilet unassisted. I can read a book on *most* days, but there are some where I cannot.

Sometimes, the CFIDS more or less goes into remission for a few days or weeks and I can go for a hike without suffering extended fatigue, but I still have fibromyalgia and, therefore, still have fatigue and unrelenting pain and brain fog. Eventually, though, I crash. My throat gets sore, my lymph nodes swell, my joints start to ache, and I'm too tired to breathe, it seems.

It's not just tiredness. It's more than that. I used to get tired after running 10 miles, but I didn't have any problems doing it again the next day, or the day after that. I didn't have any problems driving home or fixing dinner or doing my homework. My glands didn't swell, my throat didn't feel raw, and I didn't have aches that never went away.

This... it's overwhelming. It's the curling up wherever I happen to be--in the yard, on the couch, on a bench at the library and not knowing when I'll be able to stand up again. It's going to bed and not knowing whether I'll be able to do dishes the next day or even take a shower. It's coming home and putting the groceries in the kitchen, but not putting them away until I've had awhile to recoup, but being grateful that I managed to get all the way through the store and pay and get home again--even if I didn't drive.

I live with the fear that this could get worse. I could become completely housebound. I could become bed-bound. I could become dependent on others for my simplest needs--feeding myself, bathing myself... I don't expect to get worse, but when you feel like I do... you don't really expect to get better. It's not realistic to think that. Every month, every year, the chances that I'll recover dwindle.

Of course, I still hope. I refuse to apply for disability because of either hope or denial. Hard to tell which it is. ;) I wonder if maybe, just maybe, the next time I'm feeling better, I won't crash. Maybe my heartrate will settle down from it's skyhigh resting pace of 105bpm and become more sedate, eliminating the pounding in my chest that happens when I walk a little too far. Maybe I'll just be left with fibromyalgia and, ungrateful git that I am, I'll at least have the energy to complain and protest and demand adequate pain relief.

Maybe.

Comments

[backbone.livejournal.com]

Sounds like me. I refuse to die. I will win.

[mskit.livejournal.com]

It's great to hear everyone's way of fighting/adapting to this thing. Thanks for the maybe's Kras :D Def a spirit lifter.

[sabethea.livejournal.com]

the thing about CFIDS is i've done things that i'd never consider doing if i felt okay. lying down on the high street in my town. collapsing in a small ball when i was foolish enough to go to a pop concert. because it's not just tiredness, it's absolutely exhaustion, and the normal "rules" of behaviour are irrelevent.

i don't expect to get better, really. i'm also high-functioning... i think i do a lot, until i have a weekend with jay and realise what most people think is having a restful time. for me, jay's restful time is my incredible exertion.

my heart rate is ridiculously high, too. as always, the doctors can't find any reason - "just relax". but it's ALWAYS high...

[elnigma.livejournal.com]

There are debilitating conditions that come and go, suddenly, with few external physical traces. Saying "well you were *fine* yesterday" doesn't mean jack, and its not like people *ask* for a bad day.

I don't know the deep research into fibro, but my impression from talking to people is there seems to be a link with it and having endured more externally measurable physical trauma. Something medical science is still working out that hasn't healed back to the "before" state - and possibly may not heal back, its unknown. Someone mocking people with it (which apparently happens, sad to say) is being at least naive about it - I'm thankful I don't have fibromyalgia - they should be too, I'd think - it has always sounded to me to be a very difficult condition.

[quasigeostrophy.livejournal.com]

*Hugs* I couldn't even begin to relate to everything you must go through. This helps.

[ashbet]

Honey,

I've been collecting some magazine articles for you that may or may not be of use/interest . . . can you please e-mail me your address so that I can send them to you? I'm not 100% sure that the address I have is your current/new one :)

-- Andi <3

[laverick.livejournal.com]

Thank you for bringing it home to many of us, putting a personal face to this "invisible" illness. You are definitely not alone, and it really does help me to know that there are others who understand what life is like with FMS and CFS. I am sorry that you have to live with it too. But you do inspire me. :) (((hugs))))

[jaikob.livejournal.com]

I really don't know how exactly to thank you. A few of my friends are very sick, and it was really getting to me. But this entry gave me hope. Lord, I wish I knew what to say...I just can't express how much that means to me. Thank you so very much. ::hugs::

*sighs* It all sounds so fake :( but I do mean it

[chorus-of-chaos.livejournal.com]

wow...I'm right there with her on all that, and I've only been diagnosed with fibro (although I've had two psych therapists say I should have the cfids thing checked out, the doctors are always like nah, thats doubtful. sigh)Now I'm really starting to wonder.
God, I wish I could get good medical care here!