Saturday, May 13, 2006

The list of loss

Yesterday was CFIDS Awareness Day. So I thought that I would list the things that CFIDS has taken from me. You know. For awareness sake.


Singing -- I used to sing all the time. In the shower. In the kitchen. Around the house. I even use to cantor at my parish. Just a couple of weeks ago, a woman from my parish mentioned in an e-mail to me that they miss my sweet singing voice. I miss it too. I still sing a little bit every now and then, but since it's so energy intensive, I don't sing nearly as much.

Dancing -- Sometimes when I'm feeling good I boogie a bit to Shakira or Amr Diab. But boy does it wear me out after a minute or two.


Being reliable

Going to church

Motherhood -- I always used to think that the term "biological clock" was a myth. At 33 years old, I'm appreciating that it's very real. And I'm starting to come to terms with the fact that I may very well never be able to bear children. First of all, there's my history of deep vein thrombosis and pulmonary embolism. And then hemorrhaging on the anti-coagulants. And then having to be hospitalized a second time for the pulmonary embolism. Even if I was healthy these would be serious barriers to safely giving birth to a baby. But add chronic illness to that, as well as the fact that each passing year I'm sick decreases my fertility, it looks very unlikely that I will be a mother.

Playing with my nieces and nephews

Reading and processing complex information (See "career" above.)

Riding a bike -- I have recurring dreams where I'm riding a bike. Symbol of being healthy I presume.

Friends -- It's not like any of my friends have stopped being my friend because of my illness. Indeed, for months after the surgery that ended in the DVT and PE, I had at least one visitor a day -- sometimes two -- for several months. It's just that, they all went on with their lives and I couldn't.

Gardening -- Hopefully at some point I'll get a nice little container garden going on my balcony.

Independence -- I depend on the government for my income. Meals on Wheels to cook for me. My caregiver to clean my apartment. My mom to drive me to the grocery story and anywhere else when I have the strength.

Privacy -- As a recipient of SSI, I had to provide all my bank statements to my case worker when I first signed on (after waiting 20-months to be approved for benefits). I'm required to keep all of my bank statements to provide to my case worker when my case is reviewed sometime this year. So, you know, don't wanna make any kinky purchases with my debit card.

Ability to earn a living

Ability to spend time with my boyfriend -- As a UK citizen, he's only allowed to be here for roughly six months (well, technically there are no specific rules but according to the State Department, you're not supposed to "abuse the rules"). If I were healthy enough to get on a plane, I could go and spend up to six months in the UK (and that is a definitive rule). Though because I'm on SSI, there are also limitations on how long I can be out of the country (no longer than 30 days or one calendar month -- I haven't gotten a definitive answer from Social Security).

Interacting with people I can see -- Yes, I chat with people online and if I had a web cam I suppose I could see them too. But it's not quite the same.

Getting out of the house on a regular basis

There are probably things I'm forgetting (what's new, right?). But it's a pretty sobering list nonetheless.


Knitty Yas said...

this has to be the most depressing blog i have ever read. its not a put down just an obversation. you know what you need??

Watermelon. its gods gift to sadness. watermelon and sunshine.

Michelle said...

Yeah this is a pretty depressing post.

I'll be getting lots of sunshine this week. It's supposed to be 90 on Monday. I so stoked. :D

Anonymous said...

You forgot memory. ;) I forgot it was ME/etc. awareness day. Sigh.

Jest said...

I suppose the most positive thing I can say about this is that it makes me grateful that my primary issues are fibromyalgia and mental health stuff.

I miss a lot of the same things: hiking,dancing, having the stamina for a full-time career, being able to predict whether or not I'll have the energy for something (and, you know, making myself have the energy for things); and definitely riding a bike. When the fibro/CFS first hit, I had been riding 20 or 30 miles a day, and I still get flashes of the immense physical power I had in my body, but only as memory, and it makes me sad.

And I also miss "real" camping--where I haul my stuff into the woods and get away from everything. And swimming in pools without getting bad rashes. Actually, using anything with chemicals without having to read every ingredient and still sometimes getting it wrong and getting sick.

More than all of that, though, I miss being able to rely on my body to do the things I asked of it, and I miss not having to constantly think about whether something is a good use of my limited energy.

Strange--it's easier to recognize the feelings of loss and anger when I read someone else's experience than when I go through it myself. So thanks for sharing, because it helps me to realize this is why I'm feeling so irritable and peevish lately (spring is especially difficult for me health-wise).

Michelle said...

You forgot memory. ;)

::smacking my forhead:: D'oh!

Told ya I was forgetting something. ;)

I forgot it was ME/etc. awareness day.

See, last year I forgot and you remembered. We have a whole brain between us. ;)

Michelle said...

I still get flashes of the immense physical power I had in my body, but only as memory, and it makes me sad.

Yes! In my dream when I'm riding a bike, it's this profound feeling of power and movement that is so alien to my life now.

Yeah, A. wants to go camping this summer while he's here and my first thought was "I spend 20 hours a day in bed, what the hell am I going to do camping??" I figure we'll rig something up. ;)

Swimming -- oh yes, that's another thing I forgot. It's something that's problematic if there is chlorine (i.e. a pool) but also because my vestibular system is all whacked out and I get horrible vertigo if I'm on some sort of moving surface. And of course, it's hyper energy intensive.

it's easier to recognize the feelings of loss and anger when I read someone else's experience than when I go through it myself

Yeah, understand what you mean. I'm so used to closing off my feelings that when I do touch upon them, I'll feel profoundly sad but not really appreciate why specifically. So the other night I decided to just write down everything this disease has taken from me. It was really sad doing it, but I felt a lot better once I posted it. Just needed to look it square in the eye I guess.

I'm glad it was helpful for you. Hope this spring doesn't end up too bad.

Sue Jackson said...

Your list was familiar to me, Michelle - mine is quite similar. I especially miss long hikes and the great endorphin feeling of intense exercise. I very much regret that I can't backpack anymore; we had big plans for introducing our two boys to backpacking. But we do still enjoy camping, so maybe you can, too! We have a pop-up camper, which is a bit more comfortable than tent camping for me. In fact, I often feel my best when camping - all that fresh air and no stress, I guess (check out my blog entry from a month ago about camping). One thing that helps is to bring along a folding lounge chair that can go completely flat so you can lie down when you need to. Thanks for sharing your feelings; I felt much the same way last week.


Michelle said...

I especially miss long hikes and the great endorphin feeling of intense exercise.

Oh yes! The closest to hiking that I've done in the last three years was a year and a half ago when I managed to walk all the way up to the Benson Bridge at Multnomah Falls.

And working out...mmm yeah. I loved weight-lifting. Well, and swimming too for that matter. That endorphine rush. That feeling of movement.

I remember that post of yours about camping. A pop-up camper is a bit out of budget (I don't even own a car and certainly don't have a garage! lol). And I'm not sure about those loungers as they never feel very stable when I go to get out of them and my balance is so poor. But I figure between a nice quilt, air mattress, my CuddleEwe, and a bunch of pillows, we'll figure something out. :) Now we just have to figure out how to get to the campground. He he. Details are so overrated though, you know? ;)