Thanks, Julia. It is very difficult because it feels like one more
thing I have little control over it (although people keep assuming I
should be able to easily control it). I've resolved to work harder at
physical therapy because at least that's good cardio exercise twice a
week.


--- In MD-List@yahoogroups.com, Julia Williams Kodak <jkodak@...> wrote:
>
> Oh, Jessica. I've said your words and thought your thoughts so many
times. I'm a fifty year old woman, married with four sons. I was
always tall and thin. My MD symptoms began when I was pregnant with
my first child and increased with each one. I wasn't diagnosed until
1992. When the symptoms began to slow me down physically I started
gradually gaining weight. I exercised as much as possible as long as
I could and watched what I ate to no avail. I'm my paternal
grandmother made over and all though she had no physical limitations,
she was very heavy so I'm probably genetically prone to gain weight as
well. I am now completely dependant on my wheelchair and all though I
keep my calorie intake at between 1200 and 1500 calories a day, I
weigh a little over two hundred pounds.
>
> When I talked to my doctor he said I had enough to worry about with
out being concerned about my weight. I mentioned the health issues,
etc. and he tried to explain that it was probably one more thing I
could do little about. Being so limited physically, the small amount
you would have to eat in order to loose weight would not only cause a
reduction in fat but in muscle as well. We're loosing enough muscle
as it is. I've thought that perhaps if I weighed less I wouldn't need
as much muscle but I still have no clue how to loose it. I still do
my own house work, etc. in order to get all the physical involvement I
possibly can get. I'm almost miserable eating the amount I do now.
If I eat any less I feel like you, if it's the one thing that makes
the body feel good, why deprive it? Yet I know that's not smart
thinking. Then there was the smart aleck doctor who said, "Are you
sure you have MD? I thought MD patients were skinny." And what
really makes me mad is when someone assumes I'm in a chair due to my
weight and not heavy because I'm in a chair. Again, we have enough to
concern ourselves with though without being overwhelmed about
something else we can't control.
>
> I don't know what the answer is except to do the best you can until
someone comes up with an answer we can live with. If you do the best
you can then you have nothing to feel ashamed about. Do your best at
watching your calorie intake, move as much as possible, don't beat
yourself up when you treat yourself now and then, and don't worry
about it. I find when I dwell on it is when I want to eat more.
>
> As far as your parents are concerned, I'm sure they just love you
and want to give you anything in the world that might make you feel
better. I know it would be difficult but perhaps when they bring you
something you feel you shouldn't eat, if you don't eat it they'll soon
get the message your serious about it. I'm sure this is hard on them
as well.
>
> Please feel free to email me at anytime if you need a sounding board.
>
> Blessings,
> Julia
> jkodak@...
>
>
>
> ---- mhjess <mhjess@...> wrote:
>
> =============
> Hi! My name is Jessica and I'm 22 years old. Almost two years ago I
> was diagnosed with MD and it's been pretty tough. Before I was
> diagnosed I had done something pretty amazing - I'd lost 40 pounds! I
> was feeling pretty good about myself, and, even when I got hit with
> the news of my diagnosis (I'd originally thought my weakness was from
> being so big), I managed to only gain back half of what I lost (I'm
> pretty bad about emotional eating).
>
> I was hospitalized in December of 2007 due to respiratory failure and
> was made to be pretty much immobile for about six weeks. When I was
> finally released, I could no longer walk, couldn't stand on my own,
> and couldn't take care of some of my most basic needs (like pulling up
> my own pants).
>
> That was humiliating enough, but, the one bright spot of my time in
> the hospital was that I went back down to the weight I was at before
> my diagnosis - around 150 lbs.
>
> In the year since, though, I've found that all I can do is eat. I
> can't walk more than a few steps before my arms and legs give out on
> me, which means I'm in a wheelchair. Exercising is difficult because
> even the most moderate of exercises exhausts me.
>
> I've tried doing what I did before - which was limiting my calories
> and carbs - but, it's almost impossible to do that now. Part of me
> feels like I've lost so many things I enjoyed being able to do before
> I got sick, and that part of me doesn't want to give up something else
> I enjoy (eating). When you couple that with the fact that the more
> emotional and depressed and miserable I get about my condition my
> response is to eat even more ... I feel kind of hopeless.
>
> My parents try to help as much as they can, but, they don't really get
> it. I need them to keep the bad foods away from me (I cannot fit my
> wheelchair into our kitchen, so, I'm 100% dependent on them for meal
> preparations), but, no matter how much I beg them, I keep getting the,
> "Oh, come on ... it's just one cookie, it won't kill you" speech. Ten
> cookies later and, sure, my tastebuds are satisfied and they're happy
> to see me eating more, but, *I* am absolutely miserable.
>
> At my age, I don't know how much longer I'm going to live. I'm trying
> to prolong my life as much as I can and get healthier, but, it's
> starting to feel like an unattainable goal. Four years ago, if you
> would have asked me where I'd be, I would have said probably in a
> long-term relationship, if not married and with a baby, maybe. But, I
> see the prospects of that happening getting further and further away
> from me with each pound I gain.
>
> So, the point of this LONG piece is ... what do I do? I desperately
> want to take some of this weight off, but, I can't exercise all that
> much, I have little support in terms of dieting and ... I'm just
> feeling kind of hopeless.
>
> Thanks for any advice you can give me.
>
> --Jessica
>