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Posts Tagged ‘illness’

Memory

I’m in the hospital. The air is dry and I’m thirsty. On the small, rolling table beside my bed is a plastic cup filled with ice water. The table is within arm’s reach, but I cannot reach it. My arms are not strong enough to lift that far up and out. I cannot pull the table closer. I cannot lift a cup of water. It might as well be a mile away.

I tell myself that the ICU nurses have better things to do than give me water, and close my eyes and try to sleep. It doesn’t work. My throat is so dry it hurts to swallow. I decide to buzz the nurse. I have a call button clipped to the bed.

But when I look for it, I see that it has slid down beside me, and is now resting at my right bicep. When I bend my right arm at the elbow, the clip is too low and too close, right up against my arm. I try to reach across my body with my left arm, but I am too weak to stretch it far enough. My left hand lies on my right arm, too heavy to go further, the bell tantalizing inches away. Right up against me, it might as well be a mile away with the water.

Okay, no nurse. I turn my attention back to the water. I can press the buttons on the side of the bed to raise myself up more. I do so, and it brings me closer to the table. I lift my left arm at the elbow and hook my hand onto the underside of the table, bringing it close enough for me to actually reach the cup.

That’s when I realize it doesn’t matter how close the cup is. It is full of ice water, far too heavy for me to pick up myself. I contemplate trying it anyway, but visions of a lap full of ice water and no way to get a nurse stop me from making the attempt.

I still cannot get a drink. Frustrated beyond measure, I try to call out to a nurse. I hear voices outside my room. Can I make them hear me? My voice is weak from weeks of intubation, pneumonia and a collapsed lung. I call out, “Hello? Is anyone there?” They don’t hear. The voices recede.

I look at the clock. There is at least an hour before J is supposed to visit. I love his visits not only for the familiar company, but because I have a dedicated pair of functioning hands. He has nothing else to do when he is with me, and has endless patience with feeding me, giving me water, fixing my pillow.

I can lift my head, but can’t lift my hands up high enough to adjust a pillow. I can’t hold a book or magazine. I can’t scratch my own nose. I can’t feed myself. I can’t sit up on my own or roll over. I can’t get my own drink.

A machine behind my head starts to beep. I have two central lines – IVs going into large veins in my chest – and several bags of medications dripping through them. If a bag empties or something goes wrong, such as an air bubble in the line, the machine beeps. The frequency is normally annoying, but this time I am delighted. This means a nurse has to come to see what is wrong.

A few minutes pass, but finally a nurse bustles in to check on the alarm. She greets me and announces that she needs to change an IV bag. I ask if she can give me a drink and fix my call button, and she says she will after she finishes with the IV. I’m almost there.

She finishes with the bag and casually moves the table aside, picking up the cup and holding it so I can drink from the straw. In my eagerness, I suck up water too fast, and start to choke. As I splutter, she moves to the other side of the bed and easily unclips and re-clips the call button, asking me to check if it is now in reach. It is. My lifeline to the rest of the world is back.

She gives me one more drink before she leaves, and I envy her ability to pick up a cup full of water with such ease. I watch her walk out of the room and wonder if she is aware of how lucky she is, to be able to just walk where she wants. I swear that if I regain that ability I will never, ever, take it for granted.

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Walking

A year ago from the first day of my coma, I had the runs all day. Several people commented on the irony of that. I feel weird, knowing that a year ago I was Napping. It makes me acutely aware of how far I’ve come. I’ve commented before on how I wonder when going up stairs will stop feeling like an accomplishment. It still hasn’t happened. I am still amazed.

I had a nice experience yesterday, walking the dog around the block. We’ve had a bit of a thaw here the past couple of days, which has done a nice job of clearing the streets of ice, making it much easier to walk. I was marching down the street and I realized that, for the first time in a year, I felt normal. No hernia dragging my belly down, or colostomy bulging out. No sore hip. And Duncan the fluid fetus has finally shrunk to a size that it is no longer bothering me.

Now, if you put me on uneven ground, I’d go back to feeling like some sort of invalid, walking slowly in order to avoid tripping, or just tripping. I’m not normal. But it was the first time I got to feel normal, and it was great.

We are off to the cottage for the weekend. I plan to walk like a normal person and knit. I made another pair of the warmest socks in the world, and I’d show you a picture, but my web camera is refusing to work. Damn kids. Next up, a pair for Boo.

Oh yeah! And my boy is turning 10 years old tomorrow! Double digits! We bought him a unicycle. I kid you not.

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One Year

Yesterday, I was doing some work from home and  at one point called and my boss (the principal of the school). I asked her a question she couldn’t answer and told me she’d get the right person and have them call me right back. What’s your home phone number? she asked me. Here’s what I said, “Two, two, six …. um …. two, two, six …. I don’t remember my phone number.”

Six and a half years I’ve lived in this house – oh wait! We kept the number from the last place, so make that 7.5 years with the same number and I was lost. I kept wanting to use the last 4 digits from the number at the cottage and could not come up with any others. Fortunately, the person we needed wandered into the office and saved me further humiliation in front of my boss, who I do try to convince I am intelligent and with it.

I do forget a lot of stupid things – couldn’t remember whether I was 42 or 43 years old a couple of months ago, to my kids’ wild amusement. (It’s 42.) Words get lost more frequently than I remember happening before The Big Nap. And I’m running out of time on using my favourite excuse – ‘coma brain.’ People laugh when I say it, but I’m not totally kidding. I spent weeks stewing in some pretty wicked drugs and was warned that the effects could take some time to wear off. Someone, I don’t remember who, said a year. So that’s how long I decided to give it. One year, and that’s it with the coma brain.

That year is almost over. One year ago tonight was a Sunday night. My stomach was hurting and I was pretty sure I was in for a bad night. I have irritable bowel syndrome that results in random nights of cramps and pain, ending in raging diarrhea. It had been happening more frequently. Still, I had a ‘Girl’s Night Out’ scheduled with friends, and I was determined to have a good time. We do pot luck and the food was great, thankfully, as it was to be the last food to pass through my lips for 19 days.

After I got home, the pain hit with the suddenness of a shot, a stab in the belly that dropped me to the floor. My standard method of dealing with belly pain is a hot bath, and so I dragged myself up and into the tub, into water as hot as possible. It didn’t help. For the first time ever, I could not get on top of the pain. I’ve had two children without any pain meds at all (and one where they only half worked) and I can clearly remember that pain. I have a physical memory of where and how it hurt. This pain, however, except that I remember thinking that it was the most severe I’d ever experienced, I can remember nothing else about.

Some time in the middle of the night, still in the tub, I asked J to call 911. He called a friend to come look after the kids and did just that. The ambulance attendants were horrible, cruel, heartless human beings, but I don’t feel like going into more detail than that because it still upsets me, one year later. At least they took me to the hospital, where I begged the nurse in triage to knock me out. I don’t remember this, but it is on my chart, “Patient making inappropriate comments. (“Knock me out.”) Of course, in retrospect, that comment was really the only reasonable response to the pain of one’s colon tearing open.

They told me I was constipated and forced me to try enemas, which were utterly ineffective except, one imagines, at squirting soapy water and fecal matter though the growing hole and into my abdominal cavity. Fainting after a couple tries put an end to that and sometime in the wee hours of the morning, a CT scan revealed the true problem. My memories of these hours are fuzzy. At one point, J left to get our kids ready for school and my mother took over. I remember moaning repeatedly, slowly and rhythmically, “It hurts, it hurts, it hurts” and being aware that what I was doing must be hard on my mother, because I know that as a mother, watching your child in pain is just the worst thing, but still being unable to stop.

It was all pain, just pain. The surgeon showed up and told us I had a rupture and he would have to operate, and that there was the possibility of death but he had no choice. I didn’t care. All I cared about was that I would soon be unconscious. There was no fear at all.

I listened to a radio program recently about last words, famous and otherwise. If I hadn’t survived that surgery, my last words would have been, “It’s not working! I’m still awake.” The mask delivering the drugs couldn’t fit properly around the tube up my nose and it took longer to sedate me than normal, although it must have only been a moment or two. And then I was gone, for 18 days.

Tomorrow morning, I am going to wake up, run some errands, go into work, try and find a gift for Asher’s birthday on Saturday. The laundry is piling up. I have no idea what to feed everyone for dinner. We are in the depths of planning Maya’s bat mitzvah. I am scarred, deconditioned and forget things like my own phone number. But I am alive.

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A Small Whine

I am ill today. The problem with my job and being ill is that the newsletter I send out every Friday does not go away for illness. Deadlines for open houses and things do not get moved. It’s like being back in university when being sick got you nothing but less time to do the same amount of stuff in.

This makes me sulky.

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Six Months

I just realized that today marks six months since I woke up from the coma. Huh.

I still get to the top of a flight of stairs and am impressed with myself. I wonder when that will get old?

I’ve been finding lately that I’ve been getting these sudden flashbacks (for lack of a better word) to when I was in the hospital, in the ICU particularly. I wake up and remember waking up in the hospital at night and being unable to reach the bell for the nurse, then lying there helpless and desperately thirsty, with a cup of water right there, only I haven’t the strength to pick it up. And waiting and waiting for a nurse to come in. Or I’ll get in the shower and remember the first time I showered in the ICU, how I was unable to reach my own head to shampoo, and how exhausted I was afterward. Or I’ll be cutting my toenails and get this memory of how I would snag the bottom of my pyjama pants with a hand while I sat up in bed, and pull my leg up towards my body to stretch my muscles, determined to have enough flexibility to cut my own toenails by the time they needed cutting (I succeeded  – thank goodness toenails grow slowly).

It’s like I can’t shake the memories of my own helplessness. It’s the control freak’s worst nightmare, really.

Lately, I’ve been having lots of people tell me how good I look, how healthy.  “So, you’re all better now, right?” they ask. Nope, I tell them, but I’m getting there. There are a surprising number of people who seem oddly vested in me being ‘all better,’ and respond to this by saying, “But you’re pretty much all better, right?” 

Truth is, I still wear out easily, although I am not resting as much as I was. I can now open jar tops that the children can not. I have a hernia and my colostomy is acting up, and even if I cannot have the colostomy reversed, I’ll need surgery to fix it and the hernia. All is not well and I have many ups and downs. I wonder why so many people keep saying so forcefully, “But you’re fine now, right?” Maybe that’s how a happy ending is supposed to go. Girl wakes up from coma and then her health problems kinda drag on isn’t nearly as inspiring as Girl wakes up from coma and 6 months later is back to her old self (which, frankly, wasn’t that great either, but we won’t go there now).  

The worst thing what we have taken to calling “coma brain.” I have forgotten stuff and continue to forget stuff. The kids will say, “Remember when we went to S’s house for dinner and Boo didn’t want to eat, etc..” and I’ll have no memory of it. I’ve taken to telling Boo, “I don’t remember that, although I’m sure it happened,” because she sometimes takes my forgetting as a denial that it happened.

I had trouble adding 2.5 + 2 + 1.5 this morning. Lots of trouble. It took me three tries. Mostly I have the sense of humour to blow something like this off, although obviously it can be very frustrating. I’m assuming it’ll improve with time, that it is the lingering effects of all the sedatives they poured into my body and it will fade. I try not to think of the brain cells that may have permanently gotten fried.

Mostly, I’m grateful that it’s only things like 2.5 + 2 + 1.5 that I have trouble with, and that I seem to still remember all the important stuff. And that I can still walk the dog and take the kids to get school supplies. I’m tremendously grateful that my children don’t seem any worse for wear from their ordeal. Boo will still cheerfully tell me about things that happened while I was in the coma. Asher still claims that his last birthday was his best one, “You know, except for the part where you were in the coma, Mom. Because even my teacher gave me a cool present and she never gives anyone presents.” (I said to him, “Wow, imagine what sort of cool gifts you could have gotten if I’d died!” He said, “Yeah! Oh wait, it probably wouldn’t have been worth it.”) Maya has matured tremendously and her anxiety has leveled off somewhat, which I suspect has something to do with facing one of her worst fears and getting through it.

And those stairs. I still can’t get over those stairs.

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I need nap

School is almost finished, which delights me almost as much as the kids. I like the lack of routine and absence of homework.

Today was Boo’s end-of-year celebration for kindergarten. When Maya and Asher were there, they had big organized picnics where the kids sang songs and got little diplomas. This year, they just took the kids swimming, which I liked a whole lot better. All I did was sit with the other parents and chatted while the kids swam.

The outside pool for the community centre is right at the end of the school yard, so during recess, the kindergarteners swam while older kids plastered themselves up against the fence and stared in envy. Poor things.

Since Maya and one of her friends are the lunch monitors for the kindergartens, they got to go swimming too, and were mighty pleased with themselves as they waved at their classmates behind the fence.

Most of the moms (and the one dad) there were delighted with the enforced break in their day and chance to sit in the sun for a while. I enjoyed it too, only it wasn’t really a break in my day. I actually found it exhausting.

So now I’m lying on my bed with my dog, who things he’s my baby and must lie on me, trying to muster the energy to throw myself back into the fray and keep organizing to go. But a nap seems more likely.

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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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