Been looking for just this kind of group!

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Hi, fellow disabled people!

It's been a while since I dared again to look for others who might be in my boat. I'm so glad I found you!!!

I can't begin to tell you how many times I've wanted to chuck an anvil at my TV set when I've heard someone on a weight-loss commercial say, "If I can do it, ANYONE can!"

Usually they are in a tight leotard or tiny shorts and are in the process of running, exercising, bicycling, or on the treadmill.

Well, ANYONE can't! Not this ONE! I used to be one of them -- those fit and eager people who can work out intensely for hours at a time... if I needed to lose a few pounds, I just ate a bit less and moved a lot more, and I would lose the weight. But those days are over. Probably for good.

In hope of not boring anyone with a litany of complaints (and Amber, I am truly sorry for all your challenges, and wish you the best), I have SLE (lupus), which causes profound fatigue (and which is responsible for the weight gain in the first place -- sixteen years on prednisone!); congenital hip dysplasia, which causes me constant pain, walking or sitting and even lying down -- I have to walk with a cane (and I'm not a candidate for hip replacement because the lupus makes me a great risk for infection, as well as for not being able to fight the infection); herniated discs; and on the not-mobility-precluding side I have GERD, hiatal hernia, Barrett's esophagus, fibroid tumors, chronic cervical & uterine polyps; and I've recently added diverticulitis to the mix.

I used to be an athlete and a dancer! My body- & self-image was formed at that time, and it's very hard to adapt to being something else. Now, I was diagnosed with lupus 30 years ago, so I've had a while to get used to that, but my self-image is still the old one.... I still don't want to accept I'll always be like this. I still hope to be able to dance again, and skate, though I'm now 61. Hope springs eternal!

So even when the person on TV making that absurd claim is an 80-year old man, I still get upset -- because he's in better physical shape than I am. He doesn't battle constant fatigue, constant pain, and a body that just doesn't cooperate. This is why I'm here. We can whine to each other! :) No, I mean here, at least someone understands.

Replies

  • Salkeela
    Salkeela Posts: 367 Member
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    Hello catwoman and welcome to this select little group....
    I used to be an athlete and a dancer! My body- & self-image was formed at that time, and it's very hard to adapt to being something else.

    I can understand this!

    I am more recent to illness that prevents me exercising, but I was always able to climb mountains, ride horses, cycle or what ever - to what ever level I wanted - with just a bit extra training.

    Since March this year my activity has been limited by ME/CFS and although I "look" well I am unable to function in the "all-capable" manner of my previous life. Such a shock. I'm hoping for some improvements of course, but from what I've read, I probably will not regain the old me....

    So I'm trying to adjust to a re-invented me!

    And changing certain eating habits is a major part of that. It's also teaching family members about the fact that I eat less - eg I don't want those cheese on cracker snacks that he used to slip me with coffee after dinner, nor can I eat large portions - at least not if I want to get my figure in order.

    I really think keeping lean is a major issue for those of use who can't exercise. And indeed keeping lean should also help our bodies to deal with our issues. Less weight on joints, less mass to move etc. It all has to be a positive thing.

    I think for me at the moment - when I'm out of work due to this illness, and generally not in control of what I can do each day - I find some reassurance in being in control of what I eat. And of course this place is great for that... not just the tracking but the support too.

    Nice to meet you... :)
  • catwoman07076
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    Nice to meet you too, Salkeela!

    I had an egg salad sandwich today, and that was six hours ago, so I'm really ravenous by now, of course. I want to eat something but am so bored by everything. It's hard to stay committed, but not because I'm hungry and want variety, but more because I don't want to be thinking about this all the time! I have other things to deal with. Yikes!
  • Salkeela
    Salkeela Posts: 367 Member
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    Just sent you a message and friend request...

    I find making small but interesting meals something that I enjoy. If I can't eat lots, I can at least eat well within the allowance I have.

    Of course then I also have to cook volume for the family. One daughter is a runner and burning masses of calories daily - so she needs good food too, but lots more of it!

    Hopefully we can inspire each other a little. :)
  • Ambermarigold
    Ambermarigold Posts: 47 Member
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    Welcome Catwoman!

    Sorry for the very tardy response..... but this is in fact my third attempt. My laptop and I weren't seeing eye - to - eye for a while and as a result my messages kept disappearing!!

    It's great to see you've found this group and I am thriilled to hear that this is what you've been looking for. Like you, I set it up because I too was put off bu the images seen out there that are meant to encourage us to loose weight and slim down ...... as if it were that easy!!!

    You will probably be aware of my circumstances, having found the group, so you'll know that my mobility is unlike the average 40 year old. I exercise by walking, chair exercises, gentle aerobics, yoga, tai chi and using my exercise bike. I can't use weights at all.

    I hope that you'll find new ideas and encouragements here and perhaps be able to share experiences too.

    Good to have you join us and I hope today was one of your better days.

    Amber xx :flowerforyou:
  • VictoriaSponges
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    I too have been searching for a group like this!
    i had cancer and the chemotherapy has affected my inner ear and also given me Peripheral Neuropathy. basically i have a major balance issue and use a stick so that if i feel a wobble coming on, i can hopefully stop myself falling..
    On the 1st of January i will be kicking *kitten* ( well not literally as me on one leg aint good as i would be flat on my back) I am starting my weight loss programme. I am usually fine with the food but the exercise is another matter!

    I asked on the main board on this website if anyone knows of a Android App that will help me exercise at home, any of you know by chance?

    Oh and i will confess that Victoria Sponges isnt my real name ( think you guessed that) but a fictional one so friends i know for real cannot give me their unhelpful advice on weight loss and exercise.
    also i hate been watched when i'm eating and these people expect us to live on lettuce for life hehehe

    So. HELLO from me and thanks for having this great group. I hope to make many friends as upto now i have non!! oh and i love a good giggle, often at myself xxx
  • Ambermarigold
    Ambermarigold Posts: 47 Member
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    Hi Victoria,

    Thank you for sharing a bit about your situation, with us on here :smile: You balance issues sound pretty significant, but it's great to hear you are thinking positively about what you can do to get around your obsticles. I've had chemo, but have not heard of that side effect before. I can empathise to some extent with the balance problem, as I have dyslexa and dyspraxia. And I also walk with a stick at all times. My balance has been affected more since treatment began, but I mainly use it due to stiff, painful joints and weakened muscles.

    In spite of it all..... the gruelling treatments, surgery and seeing my body change beyond recognition, I've managed to keep a sense of humour. Much like yourself it seems :wink: The power of laughter should not be under estimated in my opinion!! :laugh:

    So, what exercise are you interested in Victoria? What have you tried or considered? I do a variety of exercises. I have fits and starts with them generally..... I go through phases of enjoying one, then drift into something else for a while. But whatever I'm doing, I try to keep it realistic and fun!! Both are very important to me or I get bored.

    Also, I have adjusted what I do, to compensate for the way my body has altered. So I do a lot of seated exercise!! Have you considered that option? The way I see things, it would be pointless me attempting the likes of Zumba classes, (something fast, involving co-ordination, good memory.....), when I know it would not be physically possible? Know what I mean? I'd feel a failure, disappointed and demoralised!! So instead, I've tried lots of new things: Yoga (always seated), Tai Chi & Qigong (stood and occasionally seated) and I've scoured the internet! I recently found a great video on You Tube. It's designed for people with less co-ordination or mobility. It similtaniously shows you gentle exercises for people who are stood or in a wheelchair.... And the music isn't bad either, LOL. I use this lots!! I can use either version depending on how good my day is and even flit between the two options! Below is the link to the first of three videos showing this.

    http://www.youtube.com/watch?v=zTBBVJsksaI&list=PL5tE2KFR0_JKLsJ5ToXaDMPVyuj9j9TGN&index=1 (By IvanaExercise)

    Hope this helps you.

    Amber x
  • VictoriaSponges
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    great, thank you.. i never thought to look on you tube!... x