Does anyone understand?

[shelby]

I have a quick question for everyone if you can answer it. My dr. told me that I had a small spout of brain damage or bruising and this is why I am having this problem. When this all started I was about 170 pounds and very active. When I got sick I was not able to exercise with out getting really sick or passing out. I have NCS, and I have had many spells where I have hit my head on things like the floor or the table, ect. Unfortunatlly I did not get the whole lose weight thing which stinks. I got the opposite thing, I gained a lot of weight. I am now 240 lbs. aprox.

The problem. I have problems with recognizing myself sometimes. My mom and friends and fiance say that it is normal to gain that much weight and not be able to recognize yourself. I have been this way though for about a year or so. I have days where I am fine and I get that the person in the mirror is me, but I get days where I do not recognize myself at all and it freaks me out because I look in the mirror and it is not the person I remember. I even find myself buying clothes that would have fit me six years ago and will definately not fit me now. It has developed into self-image issues because I get confused and think I should look much better if that makes sense. Please help and tell me if I am alone in this. My psych. says that he agrees with my regular dr. and that I am not crazy, but that isn't how I always feel. Thanks for any imput.

Shelby

[persephone]

Funnily enough, my rheumatologist told me I need to lose a lot of weight. I used to be about 100-110 lbs, but now I'm up to about 150. I'm only 5'1", and I reemember how sprightly I was before. Now I feel so heavy and slow. I don't even know where this has come from- I'm a vegan and I don't drink or smoke! I guess it's the quantrity of food and not the quality!

I sort of know what you mean about not recognising yourself- if I look in the mirror while I'm having a funny turn, I don't recognise myself, but I think that might be part of the general confusion about it.

When I was in the Neurological Hospital here in the UK this week, one of the things they ask about is your image and perception- I tihnk it's quite common qith neurological conditions and stuff like that.

Maybe mention it to your Dr next time?

[kristinp29]

Hi Shelby,

First of all, you are not crazy!!

Secondly, I think that Persephone is right in that not recognizing yourself in the mirror may be part of the general confusion caused by dysautonomia. It can be very scary, but have peace in knowing that you're not alone.

Email me anytime if you want to talk.

Luv,

Kristin

[Eli6596]

I agree that you are NOT crazy. Could it just be DENIAL and sadness about your current weight? I think it is hard to accept a chronic illness like POTS, and being overweight can be a chronic illness too.

When I weighed too much, I was always shocked at how I looked in photos. Even though I saw myself in mirrors, I did not really accept it. I did not truly accept that I had been overweight until I lost the weight. I did not go on a formal diet. I just changed all my beverages to water, stopped eating restaurant food, and ate sandwiches for lunches instead of hot lunches.

Karyn

[calypso]

Have you been thoroughly checked out for a coexisting problem, like underactive thyroid? That seems like a lot of weight in a short time. Otherwise, I just wanted to say I have had the opposite problem. Since getting POTS, I have lost a lot of weight and can't gain back a pound. I miss my "old" self and look a lot different now -- a lot bonier, more pale and generally unhealthier. But I am learning to accept it. I also bought clothes for a while that were my old size, but I got tired of them getting bigger on me and not fitting. Yesterday I went and bought a size 2 pair of pants, and although it seems very odd, at least they fit.

Hang in there. Weight changes and body image problems are difficult enough, let alone dealing with a chronic illness. Try to look inside and figure out the things you like about yourself, and focus your energy on getting healthy again ... not just in appearance.

Amy

[kristinp29]

Just wanted to chime in again and say that I know first-hand that weight gain can be directly caused by dysautonomia. Last spring, I gained 16 pounds in 3 weeks and I wasn't on any medications, didn't eat any differently, and had the same amount of activity as I had been before the weight gain.

The only thing that helped me get the weight off--because I wasn't well enough to exercise more--was the South Beach Diet. But, that didn't last long before I got sick of the restrictions. It worked as far as helping me get the weight off. I don't know if I would have been able to keep it off if I hadn't started going to college around that time. After being homebound, going to classes introduced a major amount of activity into my routine and kept me going. So...just a thought.

~Kristin

[Kite#7]

Hello all,

Don't worry about your weight. This will often fluctuate based on several factors , many of which you have already touch on ; Such as portion size, Meds, MOOD!! and of course the ability to facilitate a REASONABLE exercise program. Its best not to look at it as an in surmountable problem , but to tackle it in association to your Dysautonomia. First we know eating small and often is Better for us - good place to start. Exercise is important for many factors ( increase lean muscle , blood flow O2 exchange etc. ) . so trying to incorporate some kind of regimen - one that fits your life & Presnent conditon ie BEGIN walking , gardening ; then add some resistance etc. ( there are several good threads here on exercise/nutrition) I would suggest though when you chose an activity - regiment it. Make it a specific time. Give an incremental increase of effort each time. And have a goal. Make your meal before and after this activity the 2 most important ones of the Day - call them PRE & POST Workout . These will be the meals that you put the most nutritional value too - at first. Then as things improve , sizes change , body composition changes, Things fit. Do more as you can. Refine more of your meals. The key is to start with one or two things you can change , then change more as you can.

I have clients that come to me wanting to lose 25 , 50 lbs or be the weight / size they were 10 years ago. I always say Okey Dokey ; because I know their perceptions will change with the small changes and feeling better. It happens prety quick - usually the first pair of jeans they couldn't fit in last year. Now our situation is a touch different , but Idare sya we as agroup tend to a mental strengh that will allow for little changes in order to have a BETTER day.

GOOD LUCK Kite 7

[shelby]

Thanks so much for all of your replies. I appreciate knowing that all of you are going through some of the things I am going through. I love it when familiy says, well if your mom can lose the weight you can too. I was like, mom doesn't have these probs. They act like I am using it as an excuse. I swear I am not. Thanks again for your posts and supports as always. Shelby