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Posts Tagged ‘FMS’

In my quest for alternative pain relief, I’ve recently had a couple massages. The first one was quite gentle and while it was enjoyable, the effects weren’t lasting beyond about an hour. So for the next one, I told the massage therapist to dig a little deeper, work on the muscles. The muscles in my back and neck are very, very tight, she admitted, but after working on them pretty hard, she said she felt they’d softened a little bit.

I felt okay during the day, but by early evening, the muscles in my back, neck and head were just screaming at me. Moving hurt. Breathing hurt. I was wishing for some bigtime pain meds, which don’t really exist. I have no idea if further massages are a good idea – if they can actually cause a more permenant softening of my hard and stubborn muscles, or if those muscles will just hurt more at the intrusion. Must do some research on that before the next scheduled appointment.

I was a bit nervous about my assessment for the pain clinic this morning, imagining this making my early-morning stiffness even more extreme. While you have to be in chronic pain to get into the program, you also have to have the stamina to hang out in their program all day.

I made it to my appointment on time, and it didn’t even feel hideously early. They asked me all kinds of questions about my pain and functioning, including one I hate. They asked me to rate my pain on a scale of one to ten, ten being the most unbearable pain you’ve experienced. This was a question I got in the hospital a lot, whenever I told them anything hurt.

The thing is, the ruptured colon totally reset the definition of number 10 for me. Compared to that, nothing else gets higher than maybe a 5 or 6. I figure the rupture probably occured around 9 pm, given that I suddenly felt a great deal more pain than before and ended up collapsing on the bathroom floor. But I didn’t get into surgery until 11 am. Add to that the dehydration caused profuse sweating from the pain and the fact that they wouldn’t allow me any liquids, and I felt really, really bad. I felt so bad that when the surgeon told me one possible outcome of the sugery was death, I didn’t care. I really didn’t. This is basically what I thought: “Okay, whatever. Just knock me out now.” During what could have been my last conscious moments on this earth, strapped down to the operating table, all I could do was complain that the mask put over my face to sedate me didn’t have a good enough seal and I wasn’t reaching unconscious fast enough. “Why am I still here?”

They say you can’t remember pain, and I’ve always found that to be crap. I remember my legs hurting when I was a child, remember how the pain felt. I can easily remember how badly my body aches when the FMS really flares, how migraines feel, how labour and delivery felt. But I cannot remember the pain of the rupture. I cannot bring it to mind at all. I only remember feeling miserable and moaning over and over, like a mantra, “It hurts, it hurts, it hurts.” I felt badly about that, worrying that I was upsetting my mother, who was standing beside my bed helpless to do anything at all to make it better, but I could not stop the moaning. I remember begging for sedation, not understanding why they couldn’t just knock me out that moment, even if they weren’t ready to operate.

Needless to say, that experience really messes up the bell curve when it comes to rating my pain. Assigning a number to a feeling is difficult enough as it is. So when they asked me the question this morning, I decided to remove the rupture from the curve, since it was pulling everything out of wack. I decided that when the nurse says that number 10 is the worst pain ever, she really didn’t mean pain that makes you uncaring of your own death, perhaps even welcoming of it. I decided that unmedicated childbirth could be the worst pain, or maybe the vicious migraines I’ve had, which make me want to hide in a dark room and not move, but have never had me contemplating death – those could be the 10.

After the assessment, which included many questions about my life and how I handle my FMS, the doctor told me that she wasn’t sure how much their program could really do for me. A lot of what they do, she said, was help people come to terms with their conditions and then learn how to appropriately pace themselves, something the doctor thinks I have done long ago. (J disagreed when I told him, saying I don’t know how to pace myself at all). Despite that, she did think that maybe they could still help. She said knowing something (how to hande one’s illness, for example) and doing it are not the same thing, and perhaps having everything in one place and working thought it intensively would be of benefit to me. That was pretty much the conclusion I had come to as well (although I was secretly hoping they knew some stuff I don’t already, and this meeting kind of popped that bubble).

All that being said, they rejected me. Thanks to my Nap, I’m not at the point where I could handle the intensity of their course. That was what I feared would happen. However, she suggested re-evaluating me in September. She did say that it was just a matter of time. I just need to recover from, as she put it ‘this insult to your body’ and eventually they will accept me.

I consoled myself when I left by popping over to a large and marvelous garden centre near there and getting a couple little plants for the few gaps still in my front garden. Green things make everything better in spring. 

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I have a cold. My throat is really sore and goopy and I am wiped and achy. The sore throat started Monday evening. I only arrived home Friday evening. I swear, the moment I saw my chidren they must have infected me.

Both Maya and Asher were home Monday for supposed illness, but they got awfully perky and annoying and I regretted letting them stay home. The next day, Maya was fine and Asher was much worse. He stayed home again and acted as a sick child should, lying around like a blob and sleeping a lot. The two of us crawled into my bed an snoozed away a good part of the day. Now he’s back to his old self and I still feel like crap.

Part of the crappy feeling might be that I am officially painkiller-free. I’d like to say I am drug-free, but they have me on a great pile of other things, so I can’t. Anyway, I kept forgetting to take the painkiller on time the last few days and didn’t notice much of a difference, so my last dose wore off at around 1 am and I haven’t taken any since. It might not sound like a lot of time to you, but to me it is huge. I haven’t gone this long without taking those stupid narcotics since the doctor put me on them, several years ago.

My goal in getting off the heavy stuff was to avoid withdrawal as much as possible. I have experienced it several times (when I would forget to take my pills on time for some reason and a couple times in the hospital when they messed up my dosing) and it sucks in a very big way. I had a big argument in the hospital with J over this, as he wanted me to go cold turkey and get it over with. I kept saying, “I’m not going through withdrawal. I’m weaning slowly,” like a broken record, or possibly a stubborn child. The pharmacist came up to talk about it and said both our arguments had merit and I told her, “But I’m the patient and he isn’t and I’m not going through withdrawal.” I already have enough shit to deal with.

I think he secretly thought I would drag my feet at the end, that the closer I got, the slower I’d go. He underestimated my will to be free of this stuff.

So I am happy to report no withdrawal symptoms so far, just crappy FMS ones. I love spring (who doesn’t?) but it is hell on my body. I think I’ll take a nice little nap.  

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I swam. I yogaed. I walked the dog at a furious pace for at least an hour. Every day was something. Friday, I crashed. It rained, so I even got out of walking the dog.

Shauna asked if it would be better. Yeah, it’ll get better. Only it’ll take 6 months or so of having it feel worse. The entire time I was doing yoga, I had a running commentary in my brain (that I tried to squash it, since it seemed very un-yoga-like) that went like this: fuckthishurts, fuckthishurts, fuckthishurts.

The nice yoga lady, who knows I have Fibromyalgia Syndrome, told me to take it at my own pace and if it hurts, my body is telling me I’ve gone to far. Unfortunately, when you have FMS, your body frequently tells you that getting up in the morning is going too far, or braiding your hair, or walking up the stairs. You can’t listen to it. It lies. I didn’t tell her that. I just smiled and assured her I would listen to my lying body.

When you have FMS, you have to view exercise like physiotherapy. After J tore his calf muscle in the spring, his physiotherapist would massage the scar tissue, digging her way into it to break it up and telling him that the way he knew she was doing it right was by how much it hurt. That’s how it is. Exercise hurts. All of it. It hurts to do it and it hurts worse after you are done. People tell me about how invigorated they feel after they finish a workout. I just feel a sense of accomplishment from ignoring the pain for long enough to get the job done.

That sounds a bit dramatic, but it’s an accurate description. (If you can’t whine on your own blog, where can you whine?) As shitty as I’ve been feeling for a long time, I feel shittier now. The only saving grace is that I knew what I was getting into, and I know it can work.

When I was 21, unemployed and living with mommy and daddy, I began to exercise. I biked, which I loved for the speed and freedom, making it easier to ignore the pain (this time, I’m too far gone to get on a bike, but it’s almost winter anyway, so who cares). I biked for longer and longer, until I was gone for an hour or two every day. I also used their rowing machine in front of the TV, and did weight training with some small hand weights of my father’s.

What it added up to, at it’s peak, was about 2 hours of exercise a day. And, at some point, I realized that the pain wasn’t much there, and I slept through the night and I had energy. I’d kicked the FMS into remission. But it took being an unemployed bum at my parents’ house to give me the time and freedom to do it.

I went back to school for my Masters in Journalism and even though I did try to get to the gym, the school schedule was grueling and I was reveling in the revival of my social life. The exercise fell away and the beast returned. Now I’m 20 years older, fatter and in worse shape, so I think it’ll take longer to get there this time, but every study ever done on FMS had demonstrated that the only thing that reliably leads to improvement is exercise, and I have the personal precedent to back that up.

But, fuck, this hurts.

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