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Thread: New to all this

  1. #1
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    New to all this

    Hi there,

    My name is Lessa, and I'm Canadian (eh?). I've been dealing with a horrible disease for a bit now, and it finally has taken my ability to walk. When I was born, I was able bodied, now...Its all changed, I haven't yet got approved for a chair (so I'm using a rental), and its already frustrating me just what I can do while in it. I can stumble, really that's what it is a limping stumble, short distances but cannot stand or stumble for any real amount of time.

    Our house isn't wheelchair friendly, our washroom and bedroom are up the stairs. Plus...being a Canadian Military row house its small, and turning around in places can be a nightmare...Especially for a new driver lol! Its frustrating to not be able to cook for myself, not reach things I know I can otherwise, and simply walk up those darn stairs.

    Complex regional pain syndrome has taken my life away from me. I'm finding it hard to stay positive when in constant pain, and having lost the ability to do something I loved doing (going for nice long walks on trails). I end up staying inside, at home most of the time, because I feel like people stare at me, especially since my legs work, yet here I am in a chair. Its as though they're judging me for not being 'disabled' enough to require a chair!

    I'm here for support, and to connect with people. My wife is ever so darling and is the best carer a person could ask for, and I'm so lucky to have her, but sadly at times she makes me feel unable or silly, without meaning to. We're both swimming in unknown waters =(

  2. #2
    Senior Member nukecad's Avatar
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    Hi Lessa, welcome to the forum.

    You realise that this is a UK based forum, so we are not that familiar as to how things are done in Canada?
    For instance I wasn't sure what a 'Canadian Military Row House' was exactly until I googled it.
    (Similar to what we would call a 'social housing development' but on a military base).

    Presumably this means that you are ex-forces, or that your wife is in the military?

    Obviously being in the UK we are not going to be a great resource for advice about benefits or charities in Canada.

    But I guess that you have joined more for general chats with others in a similar situation to yourself.

    I see you have already contributed a comment to another thread, just keep joining in with the chats and maybe asking your own questions.
    It could well be that the differences between how things are in Canada and in the UK could be of interest and help to others on both sides of the Atlantic.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  3. #3
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    My wife is in the Canadian military in the Airforce. We live in base housing. I am not looking for too many charity or benefits, as a doctor has referred my case to a social worker, and soon I should hear from them. Really I'm here to find people like me and just have an outlet. Where I live there aren't many disabled people my age, as my town is full of some really old seniors, or military people who are all fit for duty. I've also seen mostly people my age in motorized chairs who have both mental and physical disabilities and its hard to relate to those people.

    I've read some forums and seen some differences such as we have legal ID's issued from the province that are photo id, they don't have any link to much except that we are who we present as, to get any other information is darn near impossible. It would require our medical health care number..a different card..and access to the provincial health applications. And we refer to things differently than you folks do.

    But we have standard health care across Canada, and our disability process is almost impossible to work with at times. My Uncle, who was a Polio survivor, had to go to court to get benefits. While in court he asked how they felt he was able bodied, while he was in a wheel chair, and his legs were that of a nine year old's except with no muscle tone, and no nerve responses. He got his benefits but it took them a long time.

    Like I said, I'm really just here to meet people of similar situations, to not feel as alone as I do. My wife is wonderful, but sometimes she just doesn't -get- it. To be honest, I barely get it! I'm just winging it, and feeling more and more an outsider to the world I was once comfortable in.

  4. #4
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    hello, I have heard something about what you have..CRPS and there was a wee lass on tv here yesterday with same as yourself, so I was interested to see a website which offers support www.chronicpaincrps.com ... I don't know it you have heard of it but if not it may be of help. I have found a website that offers support and experiences of others with similar illness to myself which I find helpful...and Youreable is really good too. Best wishes to you and your wife in the future....I know how hard it can be for my husband so sympathies to you both.

  5. #5
    Senior Member nukecad's Avatar
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    Quote Originally Posted by Lessa View Post
    ..... our disability process is almost impossible to work with at times. My Uncle, who was a Polio survivor, had to go to court to get benefits. ........ He got his benefits but it took them a long time. .......
    Not much difference between our two countries there then.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  6. #6
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    @Marilyn I hadn't seen that website, I'll check it out. Thank you so much.

    @Nuke Well our country is modeled after yours, so its really not surprising, heh.

  7. #7
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    You are most welcome...hope it offers some help. x

  8. #8
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    I joined the forum, but it has limited members and discussion, and from searching out other related forums it seems that because this disease is rare and uncommon there aren't many to share your experience with. I hope you all don't mind me hanging out here, I know there are some people with chronic pain on this forum, and that's at least better than nothing.

    *EDIT*

    I just called the Hospital to see if my referral to the orthopedic surgeon has been sent out, and it has. I called the office of the surgeon, and there is a 9-12 month wait. I'm so frustrated and feeling like someone punched me in the gut! Arg I hate not getting anywhere, the pain is so real and so much...i just want some help and it seems like every freaking turn I make I don't get any!
    Last edited by Lessa; 30-10-15 at 22:20.

  9. #9
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    Bit of a sticky situation isn't it? On the one hand, being in military housing means you have a stable housing situation. BUT if your wife leaves the service to look after you, presumably you lose it? Here there are SOME bungalows for servicepersons injured in duty but as you aren't the one in the service I don't know. Maybe there is some more suitable housing OFF base, but nearby?
    In UK, I'd advise you to contact social services....you need help to live your life and especially if your wife's work takes her away.

  10. #10
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    Correct, my wife is being medically released in the next few years, so we are looking for a different place. The stairs are simply too much for me and they're causing more pain to an already painful situation. There is Social Services here, and I am going to call them on Monday, while she won't be sent off to fight due to her medical limitations, she is still at work for 8+ hours a day, and I am trapped in the house unable to do much. It really sucks =(

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