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Losing weight when you use a powerchair

Hi everyone

Just looking for advice on how to lose weight.

I'm 5 foot 5 and over 14 stone 😔 my BMI is 34.3 which is obese.

I put the weight on years ago after having my kids and can't seem to lose it. I say can't but obviously there is a way I just have to find it. I hate my body because of things I cant do any more due to illness and I feel like losing weight would make me feel better again.

I have Ehlers Danlos Syndrome and hemmorhagical cystitis (sp?). I am awaiting seeing a stoma nurse because I'm having my bladder removed. Walking around is really difficult due to all the joints in my lower half being unstable and constant pressure from my bladder so I was referred for a power chair.

I cant use self propelled as I have osteoporosis and costochondritis of my ribs which means I have constant pain just from lifting my arms up to my chin or even hiccups. This isn't a sob story I just really struggle with it and to try and avoid costochondral joint injections as you can only have so many I was advised by the pain team not to do weights etc. My last flare up where I couldn't even breathe in was caused by a low impact aquaerobics class 🙄

I also have inappropriate sinus tachycardia and low blood pressure. When I do any form of cardio exercise sometimes even just standing up, my heart rate goes up abnormally and I lose my sight and vision temporarily. This has been the case since I was very thin as a younger person, and my children have inherited the same condition. When my daughter went trampolining for the first time she fainted mid jump and it's quite scary. I believe it's called POTS.

The only exercise I have found easy to do is some walking around my flat every day and also stretches.

I figured a few years ago the only sensible way for me lose weight is via diet. This is also where I struggle.
1. I'm vegetarian by choice and have been pretty much since 16. I know I *could* eat meat but the thought of it physically disgusts me and I've tried to overcome that to make things easier on myself
2. My rheumatologist told me to eat at least 2 portions of cheese or a pint of milk every day due to the osteoporosis (the only reason I don't eat a fully vegan diet)
3. I have had iron and folate deficiency my whole life and have high dose tablets every day as I dont get enough from food
4. I have celiac and therefore free from things like pasta and bread are often more calorific for me than the standard version
5. I have colonic dysmotility due to EDS and as well as senna and movicol I'm not supposed to eat too much fibre including fruit and veg
6. I have esophageal dysmotility and manage via a soft food diet so anything I do eat has to be soft and easy to swallow
7. Until my bladder is removed, which the NHS don't want to do yet due to my age despite my urologist saying it needs doing, I have to follow a low acidity bladder friendly diet which means no tomatoes, citrus or onions etc. My next appointment is in July and I'm told the process will take a couple of years
8. I don't have any alcohol or caffeine for health reasons and I have to drink a LOT of water for my bladder and kidneys so I'm often too bloated and full from water to eat big meals.
9. Due to the low blood pressure and fainting my cardiologist wrote "eat a moderate salt diet" which goes against anything weight loss "experts" say.

Sorry for the huge list, I'm just struggling. Added to this is the fact I have a hand injury at the moment and my partner is as thin as a rake and lives off pot noodles and does not like any vegetables. My children are the only ones who eat healthily and have nutritious food but it's usually stuff I dont eat like meat, tomato based dishes (their favourite), and things with gluten so I usually just use my energy cooking for them and live off nachos or GF pasta dishes and baked potatoes.

If I had to cook us all a healthy meal it would be 3 separate things and I'm bloody tired. Part of me wants to tell my partner to just look after himself but he has mental ill health and as part of that he was recently diagnosed with aspergers. He is very stubborn and if I just made him vegetables he would just starve. I didn't know until his family told me, I thought he was just quiet when we met, but he ended up ill when he lived alone as he just doesn't eat unless someone tells him what to do in the kitchen and to eat. Apparently he had just lived off wotsits and haribo for 6 months and because he was out at work people assumed he had eaten there.

Sorry for the rant. Anyway over the years I've tried so many things to lose weight...
1. Reducing my calories. Every day I eat less than 1200 kcal and I don't think that's enough as I move around so little. I feel like my calorie deficit should be much higher because I'm using the powerchair but I can find no definitive guide on how much to eat when you are sat down all the time.
2. Scarsdale diet, which I replaced the meat with portions of cheese or cottage cheese. I lost 2lbs over 4 weeks instead of the recommended 7lbs a week and I spent most of the time being sick from constant hunger nausea
3. Meal replacement shakes, the only thing I really enjoyed because I just cant be bothered eating and they were easier to swallow than food. Put weight on having one salad meal and 2 shakes per day. The shakes contain more calories than I currently consume over the course of a day anyway.
4. Lifestyle changes. Just eating fruit and veg and nuts, blending them if I can. I have recently tried 10 portions of fruit and veg a day, no pulses or grains etc, which is hurting my bladder so much but I'm really trying. Last night my stomach was hurting so much from the fibre and when i weighed myself this morning I've put 2lbs on in a week. I dont ever have tea or coffee any more and I drink rose or peppermint tea etc, no sugar or honey.

On Friday after a blood test and ultrasound done recently I was diagnosed with PCOS. I hadn't had a period in over a year and assumed it was stress. My doctor said this is probably why I'm struggling with weight but to manage it by losing weight. I cant have medication to manage it because I have estrogen induced focal migraines, and the ones they use for diabetes affect your bladder and they dont want to do anything to make it bleed even more than it is. I've basically been told we can treat your PCOS but after your op which I have no date for.

Here lies the other problem. I dont want to be fat for the rest of my life. My bladder surgeon said that he isn't concerned about my weight because I dont "look" obese. Every doctor says this to me. I've always been heavier than normal because when I was active I was muscle from hiking all the time... and my partner says I have an adamantium skeleton 😅 the doctor ddnt believe that I am almost 15 stone until he weighed me. He put me down as overweight with midline obesity and said the BMI isn't accurate for me. He did say if I dont lose the weight around my middle before surgery I cant lose it drastically afterwards or my stoma will prolapse and wont be in the right place. So for me, I want to lose it now before surgery so my stoma can be placed correctly and any future big weight loss wont cause more operations for me.

I'm looking for advice for someone who cant exercise, has an odd diet, and has PCOS so my own body is making it hard for me to lose weight! I will try anything that is possible to do! Can you just ask for a referral to a dietician? Are they any good? 



Replies

  • Ami2301Ami2301 Posts: 5,438Community champion Disability Gamechanger
    Hi @Zebra88 I am so sorry to hear your current situation! Having all these things to consider does sound extremely tough! Have you received physiotherapy? If not, hopefully they can suggest exercises or strengthening exercises once taking all your conditions into consideration. The one thing that has worked well for me and I have managed to stay around the same weight for a year, is by eating 3 times a day and no snacks.
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Zebra88Zebra88 Posts: 55Member Connected
    Ami2301 said:
    Hi @Zebra88 I am so sorry to hear your current situation! Having all these things to consider does sound extremely tough! Have you received physiotherapy? If not, hopefully they can suggest exercises or strengthening exercises once taking all your conditions into consideration. The one thing that has worked well for me and I have managed to stay around the same weight for a year, is by eating 3 times a day and no snacks.
    Thank your for replying. Yeah I've had physio on and off for years. Even seen a specialist in joint hypermobility who gave me the strength and stretching exercises I do now, but they're mostly for staying mobile not losing weight. They referred me to this thing called healthy life because there was no point in me keep going to the appointments to update them on how many stretches i had done every month.. it's basically a discounted gym membership for disabled people. The problem is the that as soon as I did the one class I ended up in hospital unable to breathe due to my rib cartilage and the healthy life coordinator actually said to me they couldn't find anything I could safely do. My local leisure centre is small and in a small village/town but they are building 5000 new homes here and its very overcrowded and oversubscribed now. They have limited pool entry and exit to an hour but it takes me 30 mins just to get changed on my own and into the pool and theres nowhere to store my powerchair. I'm looking at private gyms to see if they're any better but would have to pay full price as well. When I asked to be re-ferred to physio I was told the healthy life was the most appropriate even though healthy life have said it isn't. So frustrating!

  • Ami2301Ami2301 Posts: 5,438Community champion Disability Gamechanger
    I know how you feel, in a small way, I'm 30-45 minutes away from accessible leisure centres, I'm out in the sticks (small village). I think being referred to a nutritionist may be a plan? :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Zebra88Zebra88 Posts: 55Member Connected
    edited April 7
    Ami2301 said:
    I know how you feel, in a small way, I'm 30-45 minutes away from accessible leisure centres, I'm out in the sticks (small village). I think being referred to a nutritionist may be a plan? :)
    I think so, I'm yet to come across a health professional who can put everything together and work with me so I'm goping the would look at everything I said above and come up with some fancy diet. My main problem is not knowing how many calories I need to lose weight I think because I dont know what my metabolic rate is as I dont move around. Average for someone my age and sedentary is 1200 but I'm like super sedentary. When I asked my GP she said that I shouldn't bother about my weight right now and to concentrate on the bladder op,and if it prolapses afterwards then they will just do another op. I'm gonna be in hosp for 3 weeks, recovery for 6 months and I only want it done once. I know I have bigger problems than my weight but I'm sick of people looking at me and assuming I'm disabled because I'm fat, when in fact im fat because I'm ill😅 I'm going to ask re the nutritionist 
  • Ami2301Ami2301 Posts: 5,438Community champion Disability Gamechanger
    I have a low level of mobility too, intensive physiotherapy is a big part of my recovery so I have to do it - I do enjoy physio though! Keep us update and let us know how you get on :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Jean EveleighJean Eveleigh Posts: 59Member Pioneering
    Hi as another EDSers who has managed to lose excess weight despite being 70% wheelchair/bed user - one thing I found helped immensely with exercising was hydrotherapy and when my NHS sessions had ended going to the local pool and continuing them in my home life - is it worth asking if hydrotherapy is on offer in your local area or even if not if any of your existing exercises can be adapted so you can do them in the local pool, you should find you can do more reps, longer holds and deeper stretches as the water takes some of the weight and buoyancy of the body
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