CP Alters Your Cardiovascular System

About a month ago Ellen wrote a post about how max is super skinny. Max has oral coordination problems and she was wondering if he isn't eating enough. I responded that a high metabolism comes along with spasticity and went into detail. I wonder what people think when I write comments that are longer then the post. The tighter your muscles are the more calories you burn. Even just sitting on your butt. I learned this when I had my first gait lab experience at Gillette. Tight muscles need more oxygen and that means your heart has to pump faster to keep up with that increased need, and well you can eat a whole lot. It explains why my resting heart rate is in the high 80s-low 90s.

Before I had my big surgery I ate TONS. I don't know how my mom kept up with the grocery bill. I also have a former roommate that ate bowls of ice cream for dinner and chugged Hershey's syrup out of the bottle and couldn't gain an ounce. She's super skinny, has been always. This isn't to say that someone who has increased spasticity can't gain weight/be overweight. That is an equal probability it seems from what I've gathered. If you have a harder time getting around, especially if you're a full or part time wheeler, you just don't have the opportunity to burn it off. It all depends on many factors. This drove me crazy for years, but now I just don't care anymore.

This brings me to a question I've been meaning to pose on here for a long time. I run. I LOVE TO RUN. I've been told it's bad for my joints, that I put 3X the force on my ankles as opposed to able bodied people, but I don't care! Except, well, I've always wondered if I'm doing damage to my heart. The heart rate monitor on the treadmill often reaches 200bpm and I've always assumed it's actually higher--that the machine just doesn't go that high. My thinking though is that you're supposed to double your resting heart rate when engaging in cardiovascular exercise and being that my resting heart rate is 92 lets say and that it's oh, about 124 just walking at 1mph, I SHOULD keep my heart rate that high.

I breathe so heavy, get bright red, guzzle tons of water, take what seems like forever to get back to a normal rate of breath. Is that ok? Don't just say no, substantiate your opinion. Any cardiologists read my blog? I'm wondering if the heart just isn't designed to work that hard and if I am going to wear it out at a young age. Should I be worried? Or am I paranoid as usual?

What I've Known: A DBC post

Ever since I was a little girl I've known that I needed to watch my weight. No one ever said anything to me--you just don't say that to a little kid--but doctors said it to my mom when I was in the room. They waited until I was a teen to say it straight to my face. If you have little kids, or if you work with little kids, then you know they pick up on more then you think. I've known I've needed to watch my weight since I was so little that I can't ever remember not having an intense fear of being fat lurking around in the back of my head.

Here's the logic:

People who have CP have a hard time walking.
People who are overweight have a hard time walking.
People who are overweight and have CP really have a hard time walking

Makes sense doesn't it?

Here's more logic:

The harder it is to move, the less you move.
The less you move, the less calories you burn.
The less calories you burn, the more weight you gain.
The more weight you gain, the harder it is to move.

What it comes down to is this: MOVE and watch what you eat.

Doesn't everyone need to move and watch what they eat you say? Well yes--but it's worse when you have CP. Being fat can translate into virtual imprisonment. When it's hard to get around to begin with, making it even harder is sometimes too much to bare. In my mind (this probably isn't true) fat people with CP just sit home alone all day. Doing anything else just requires far too much effort. As a skinny person with CP, sometimes doing what I have to do in a day requires too much effort for me. I don't want to try it fat.

The fear of not being able to move is recent. Not the fear I had at 6 or 7 (maybe even as early as 4). It's just amazing how young you pick up on ableism. And a damn shame. When I was little I had this picture in my head of a faceless greasy woman sitting in a manual chair in the dark right next to the couch, watching TV alone. The woman was faceless because I didn't have a concept of how I'd look older, but it was me. It was me fat and alone and very depressed. No one would ever love me like that. Why would a man ever love someone that grotesque? FUCK ableism. Why would you do that to a little girl? Of course overweight people in wheelchairs aren't grotesque. I know that now.

Thankfully there was too much going on in my life to worry about what I put in my mouth on more then just an occasional basis. There was horseback riding and playing and even awful things like surgery and my 5th grade teacher. Even awful things canpush back fears. I always said I didn't need to worry about my weight until I was done growing. Thankfully I was reasonable.

As soon as I stopped growing though, I began the journey of becoming paralyzed with the fear of being fat. At first it was the fear of being ugly and alone. But thank god one day it dawned on me how crazy that was. I'm not exactly sure when that happened. It was a gradual process throughout high school in which I moved towards my new fear--my fear of loss of function. It was at this point that I really began to grasp why I needed to be concerned with my weight. I feel as though I'm a broken record on this blog. I didn't spend my entire childhood in hours and hours of therapy and in the hospital being sliced and diced not to walk.

The phrase "if you don't use it you lose it" applies so much more when you have CP. I've been depressed and laid in bed for weeks to the point that when I finally got out of bed I could barely stand up. It doesn't take long. Being fat would probably expedite the process.

I've weighed myself practically every day since I was 17. I'm 5'1.5" (the .5 matters). I prefer to be below 120lbs. Lately I've been hovering between 121/122. But I have more important things to deal with right now then counting points. I'm annoyed at that number all the same. It's ok though until I see 123 for more then a day or so. Then I know it's creeping. Creeping towards 130. 130 is that magic number I can never be. 130 would cause severe panic. I'd be fat. Well not really. Not until 135 according to a BMI calculator. But still...

The theme for the 39th DBC is "if I knew then..." Sometimes what you've known can be so much more damaging then what you didn't. I've thought about my weight every single day for the last 7 years. That isn't healthy.

I'm Obsessed with Walking

I have 2 therapists (LCSW-C & an LCPC intern) and a psychiatrist. I discussed my poem with both my therapists this week and will be discussing it with my psychiatirst Mon afternoon. Unfortunately I hadn't been to my main therapist since Valentine's Day so we really couldn't go into it in depth. It was more of here's all of the crap that's been happening. To go off on a tangent, today was one of the best days ever, but that is the subject of another blog post. Anyway, all we had time for were a few "What exactly do you mean by..." One of which was "I'm tired of not being in control." Well, I said, I don't want to do an $8000 overhaul of my wheelchair. I don't want it. I don't want it at work. But if I want to/have to do a placement in a trauma hospital then I have no choice. I have to have a placement at one of the 2 trauma hospitals in Baltimore because my school won't let me go anywhere else. I voluntered at one hospital for a year and a half, and last semester I did a small placement at another. They are my only 2 choices left. So what am I going to do? I also didn't have control over 4 of the 7 surgeries I've had. Well 3 out of the 4 of those didn't work at all and all 3 of those I was VERY vocal about not wanting, but I was 10 and 17, so tough luck. The 3 I wanted worked for the most part.

I realized soon after I left that I am obsessed with walking. I keep saying this (I know I've said it in more than one blog post) but I didn't spend my childhood in a hospital being pulled apart and put back together to use a wheelchair everyday at work. I feel misled. Also, I had several doctors scare the crap out of me 5 years ago. Even with all those surgeries, if I start to use the chair too much at work my muscles will atrophy to the point of me not being able to walk at all. Not only that, but even 6 weeks of hanging mostly around my house sitting on my butt will result in trouble walking. So doctors don't have to tell me this. Either from my powerchair or sitting on my butt, I've experianced this several times. Thankfully 6 weeks doesn't do permanent damage.

Also (I think I've mentioned this in a previous blog post or 2 as well) I learned to walk 3 times. As I said to my therapist, walking is supposed to be something you just do. It's not something that should take this much effort. I realized after I left, that in some sense I am consumed with walking. It is something I think about every day. I'm not sure that's healthy. In a sense being active is a good thing for anyone, but often I push myself to the point of feeling like the walking dead at the end of the day. Very often. I am that affraid of one day not being able to walk.

I'm also concerned about my weight. The first thing I do every morning after I pee is step on my scale. Extra weight will put extra stress on my joints, and who wants that? To put this in reference, I am 5'1.5". If I ever saw 130lb I would be utterly besides myself. A few times at one point I saw 129.8 and while I wasn't happy, 130 would still be much worse. I prefer to be no more then 120. I went a long while disappointed with myself because I was 125-128 and then I discovered that if I come home feeling like the walking dead several times a week I can eat all the junk I want and maintain around 118. I'm not sure that's healthy either, but thinking about my weight everyday is also permanently ingrained in my being. Just to put everyone at ease, while I was in high school my mom asked an LCSW-C and 2 different PhDs whether I had an eating disorder. They all said no, since my concern stems from CP issues (walking). She was still convinced even after all three of them said no. Also, I am absolutly loving 118 and have no intention of going lower. 118 is perfectly healthy for my height. But maybe in a sense they were all wrong? Maybe I have a "walking disorder." Too bad you can't look that up in the DSM IV-TR.

To stem off of something the intern said on Monday, think of all of the energy I spend being so concerned about being able to walk. Then think about what else I could be using that energy for. It just doesn't make sense. Except, I think that I was raised with such an emphasis being placed on walking, with surgery and therapy and what not, that I'm not sure if I can concieve of even attempting to refocus that energy. Going back to the poem, which I spent more extensive time talking about with the intern, there are several other things in there that I'm tired with that stem from my childhood. It almost seems as if I have to overhaul myself in order to become a contented person. It's a daunting task.

If only it didn't seem like such a catch-22. Walking so much makes me so tired (HELLO, "walking dead"). I know I would be a lot less tired if I didn't walk so much but then maybe I wouldn't walk ever again. I would feel like I was admitting defeat.