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Feeling very alone, hope to find support here

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TheArctic
TheArctic Community member Posts: 8 Listener
edited May 2018 in Disability rights and campaigning
Hi there :)
I'm a 37 year old girl who live just outside of Oslo. Surfed my way into this forum, and decided to join. Think it's a shame, but we have no such forum in Norway. I've been visually impaired since birth due to albinism, diabetic t1 for 22 years, epilepsy that thankfully is well medicated, bipolar disorder... Not been lucky with my health, but in theese problems I do find equals and really good friends. The ting is that I hurt my legs in august last year. Spent one month in hospiital recieving dialysis for acute renal failiure from rhabomyolysis (crush syndrome, proteins from dying muscles get to much for the kidnys), then three months in rehab. Luckily it has gone the right way. At first I was in a wheelchair and could barely walk. Now I can walk shorter distances whith the aid of braces and special ergonomic chrutches. That's probably the outcome I have to live with. I still receive physio, but that's more maintennance so I don't end up declining. I still suffer nerve pains in my feet, and dropfoot. I have both a very nice GP and a great neurologist that I've seen for my other neuro problems for 20 years. He really cares for his patients, and doesen't give in before he finds the best solution possible for any problem. So I really hope we'll find something to alleviate the pains.

The thing is that I feel very alone in this. No place to learn from other people's experience, questions I don't really know how to find the answers to... Stupidly simple questions like what requirements it takes to charge an electric wheelchair... Where I went to rehab the average age was 80+. Some where very nice and worked really hard to get back to health, but their problems where quite different to mine. Like strokes, broken hips, some also had dementia. So that was a real challenge to me. Thankfully I had my romm I tried to make as cosy as possible, my computer, audio books and internet access. And my fantastic family. They have been very supportive, and still are. As have my friends. And the staff at the rehab facilyty - very good pfysio- and occupaional therapist. I would'nt be where I am today if not for them.

So now I've talked problems, problems, problems. That's not what I am, they are challenges and something I have. I have interests like every other person like painting/drawing, being social, books, music - play the guitar and the piano.

I hope to find support and a soscial arena in here :)
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Comments

  • sakinah
    sakinah Community member Posts: 14 Connected
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    hi there Arctic x

    just read your post and you are not alone, i know personally to some degree what you are going through especially with dialysis which i have to have to along with other conditions like possible bipolar, mood and anxiety disorder and also partly deaf, its a lonely world sometimes amongst many of our circles who are healthy and try to help but don't really understand what we are going through as much as their intentions are good they have no real idea what its like day in and day out every single day of your life, something is bothering in your body and stops you from living the life you want but our body is failing us!!

    but as my motto goes and will say on most post

    STAY STRONG
    BE POSITIVE
    KEEP FIGHTING THE GOOD FIGHT

    i know its hard sometimes, when your going through bad or very bad patches but we need to keep telling ourselves mentally this things and secondly to Love ourselves more, and pay attention to ourselves more, pamper ourselves, treat ourselves, we deserve it considering what we have to continually endure throughout our lives.

    so treat yourself that makes you feel good, be it retail therapy, spa therapy or any other kind of therapy that you enjoy depending on your abilities, no matter how silly or small if it makes you feel good then do it, even if its singing and dancing frantically to old time tunes in your front room on your own, do it if it makes you feel good!! xx

    take care

    sakinah xx
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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
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    Pleased to meet you !
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  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
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    Hi there,

    Rhabdomyolysis! Goodness, what horrible luck! I'm glad that you've had such excellent care, but I can imagine how alone all your conditions must leave you feeling! A lot of us here are in the same boat, but this place is great! Welcome!
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  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
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    Very good to have you with us, @TheArctic. I'm sure you'll make many more good friends, and some excellent people have already responded.
    I'm intrigued to know more about your painting and drawing too.
    Whatever you do, stay in touch.
    Warmest best wishes,
    Richard
    @JennysDad
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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Hi @TheArctic, and welcome! If we can be of any assistance, do let us know.
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  • TheArctic
    TheArctic Community member Posts: 8 Listener
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    Thank you all for your inputs :) This was really nice reeding! Not that you struggle, but your warm and caring reception.

    As for my painting and drawing.. I'm not awfully good at it, but I think it's fun. I like to joke with words and draw some comics about it. Since it's in Norwegian it would be difficult to understand them for people who don't know the language. My paintings are mostly non figurative, abstracts. I have done some whater colour and acrylics. Before I got hurt, I used to attend a painting group and hope to get back there. I met the guy who runs the group last week, which I really enjoyed. He has become a very good friend of mine. Problem is that I have to conquer a quite steep hill to get to the place where this group and otherr activities are located. Could go by taxi of course, but that would be expensive over time. I want to apply for an electreic wheelchair for outdor/inside malls wheelchair for longer distances, so I'm on a vaiting list to see an occupational therapist at the part of what I'd transulate as the Norwegian work and welfare system. You have the NHS - guess there are som sumularities, and some very different things. But I have to stay on that waiting list in order to see this person for assessment of my needs, and hopefully get some tryouts. Then there is the application and wait for their decision - might take around 3 months :sigh:. If I get it or not. If not, I am going to take the apllication to a higher level, but that process really takes time. Should really whish I had concidered this earlyer on so i MIGHT had it now before the summer. It's depressing having to say no to things that involve longer walking distances. BUT I KNOW I'll find some way around this problem as this is a nice place. Lot's of different activities there. Music studio, whriting group, reading circle, gardening, Establishing activity groups is for everybody. I like to describe the place as a creative activity workshop. It's mainly an offer to people that have experienced/ecsperince psychiatric challenges. I am going to get my @**e up there in some way.

    This got very long, and proably a bit boring. Hope you bare whith me, and some not perfect English ;)
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  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
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    Hello @TheArctic and thank you for getting back to us.
    Boring? No. A very interesting and enjoyable read in fact, which leaves me rather awed by your courage and determination. You seem to be an amazing young lady and I wish you the very best of luck in everything you aspire to.
    My enquiry about your artwork has two causes - one is that art has always been my 'thing' - drawing, painting, sculpture, photography; you name it - so it is always interesting to meet someone who shares some of that enjoyment.
    I would say, too, that I'm not really very good at it either. The second point is that we have our own on-line gallery here, Kaleidoscope, for members to exhibit their work. You might like to check it out and perhaps post something.
    It is lovely, too, to welcome a member from Norway, a country I would love to visit and which I know is very, very beautiful.
    Lovely to chat with you any time (and your English is better than a lot written by English people),
    Warmest best wishes, always,
    Richard
    @JennysDad

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