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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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A walking cane?

Discussion in 'Lifestyle Management' started by Nielk, Mar 9, 2014.

  1. JAH

    JAH Senior Member

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    I know exactly how you feel and am very self conscious about it as well. Even googling for a cane was a tough pill to swallow for me. Check,out the Lekis - they (not me) are cool...good luck going to the arboretum, JAH
  2. Valentijn

    Valentijn Activity Level: 3

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    I've had 0 problems using my mobility scooter :) No nasty looks, or comments, or anything. Generally people are more likely to smile at me (especially little kids) and are very polite about giving me room to get by, or get into the elevator, etc. And I'm 35, overweight, and looking about 25 :D Definitely give it a try at least once - I was hooked after my first ride!
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I know exactly what you mean, but it's surprising how many young people use sticks. I didn't particularly notice until I got one, since when I have felt a kind of solidarity with others who use them! :) They make life so much easier, so you can do more.
    WillowJ, Calathea and snowathlete like this.
  4. Valentijn

    Valentijn Activity Level: 3

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    I don't think I could be trusted with one of those ... I'd be way to tempted to point them at people while making "pew pew" sounds. And/or flourish them like a fencing foil :) If I needed a cane, I'd definitely have to go for a granny model.
    taniaaust1, WillowJ and Sushi like this.
  5. Calathea

    Calathea Darkness therapy

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    I'd avoid hiking poles, the grip's wrong. Figure out what sort of stick you need physically, then have fun looking up all the attractive options that exist for that size and type. It makes a massive difference to have a snazzy looking stick, and you even get compliments on it! I struck up a nice conversation with a neighbour whom I spotted using the red and black check carbon fibre stick.

    You can even get sticks with LEDS in them that glow, for heaven's sake. I'd be getting that like a shot if it were available in the UK.

    Yes, you will "look disabled", but we need to stop buying into the shame that our culture tries to make us feel about that. You can still be independent, stylish, charismatic, and a force to be reckoned with if you're disabled. You should absolutely not let other people's social stigma prevent you from leading as full a life as you want to. And heaven knows that the ME prevents us from doing plenty as it is.

    Mobility aids are about empowerment, not about holding us back. They enable us to do more. Standing around feeling dizzy and having to home early for want of a walking stick isn't helping us! Plus people are a lot more sympathetic when you need help, even if it's just a bit more space to walk through a door, when you have a mobility aid.

    As for wheelchairs, my former partner hated any sign that I was disabled, and pretty much refused to take me out in the wheelchair unless it was an emergency such as surgery. It was an awful relationship in many ways, and he made me feel awful about myself and the fact that I'm disabled. I've been with my current partner for coming up to eight months, and he loves taking me out in the wheelchair. We use it all the time. Now I have a social life, I get to the pub with my friends, I get fresh air, I see trees close up and personal on a regular basis for the first time in years, we can go shopping together, and my life has opened up dramatically. We're working on making the wheelchair look nicer and be more functional (reflective strips and chevrons, hockey tape on the handrims, both in blue) and I'm actually looking into buying a better-quality wheelchair rather than the NHS job I have at the moment, in the interests of making hills easier. I never thought I'd end up ogling wheelchairs. (Seriously, the Karma Ergo series has lovely lines! And comes in red!)
    AndyPandy, NK17, xchocoholic and 5 others like this.
  6. maryb

    maryb iherb code TAK122

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    @snowathlete
    I think we've all been where you're at. Previously healthy people, fit active and now needing a wheelchair.....its a blow definitely and the first time is the worse, after that you realise the sense of freedom it gives you after being so restricted, and boy you'll be away, you realise people actually don't look or care, its more about how it affects us.

    Last year I went around a stately home - couldn't do the main house as it smelt of mould but the grounds were a whizz in the free electric scooter, set in about 30 acres - all accessible - my husband struggled to keep up with me at times - that was fun!!!
    Go for it and enjoy that arboretum with your daughter.
  7. PNR2008

    PNR2008 Senior Member

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    I wonder if anyone's tried the stand up canes that have 4 little legs on the bottom because when I walk my dog and pick up after her I can never keep the cane balanced on my thigh bending down.

    I love the ones I have also "fashioned" from walks in the woods because they are pointy on the ends and can be stable in moist ground plus are good for moving pricky bushes out of the way or shaking at wild turkeys, bunnies and other odd living things that come my way.

    Also I have the wood cane with the round handle and a folding metal cane for the car. If I don't stop myself I could have a wardrobe of sticks.
  8. WillowJ

    WillowJ Senior Member

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    I rarely have anyone question me when using a cane or a borrowed wheelchair, except occasionally health care providers (Why do you need that? [in a hostile tone] Did your doctor prescribe it?), and one small child who was curious/confused (she told me her grandma uses one, and I do think I seem in some ways like a grandma and in some ways like a teen/early twenties, though neither is correct... so it was logical for her to ask whether or not I was a grandma).

    Generally everyone is kind, and tries to help me. They are even a little kinder at the airport/TSA, and that is saying a lot!

    I would use the chair and go on outings with your family. When I was a little better I have done this (in pushed chairs--I am sure electric is much better!), and it was well worth it and no one questioned me at all. Other people who could sometimes walk also used the museum-available wheelchairs.
    Last edited: Mar 10, 2014
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I've actually been dreaming about getting an electric tricycle since last year. Unlike the huge, functional 'invalid carriages' of my youth, today's adult trikes are really cool! There are some shown here.

    I can't afford one at the moment, but I would really like something to use to go further than I can on foot, as the public transport round here is very infrequent. I used to ride a motorbike and drive a car, and really miss the freedom.
    xchocoholic and Valentijn like this.
  10. Calathea

    Calathea Darkness therapy

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    Ooh, pretty! I don't have anywhere to keep one, and I wouldn't be safe on the roads, but we can all dream.

    Right now I'm considering getting a better wheelchair than my NHS one. You can get them with slowing brakes on the handles, which would make hills so much easier. I live in Edinburgh, which is about 50% hills. Karma seems to be the manufacturer to go for, either the Dove or the Robin. Seriously, who thought Karma was an appropriate name for a one of disability products?! Anyway, the Ergo ones look very pretty, but don't come in my seat depth.
    WillowJ and Nielk like this.
  11. Pinkheaven

    Pinkheaven

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    I used to be really self concious about my cane but i got a really nice one and i use it when i get bad. It's red with white polka dots.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    You can get folding electric trikes, but there isn't such a wide range and they cost more. Here is one and here is another.
  13. NK17

    NK17 Senior Member

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    @Nielk

    Same exact situation here with me.

    So after overthinking of getting a walking cane for a long time, I finally found the "courage" to ask my rheumatologist for a Rx because of my fibromyalgia and dizziness.

    I got a cheap one at the pharmacy, it's a nice shade of dark blue.

    I wanted to stay away from the really decrepit and sad looking ones and the antique models which might not have the right ergonomic handle.


    It has a nice chunky grippy handle that I've embellished with a navy blue wool pom-pom, because even if achy and unstable I still feel young like in my previous life and I like things to look nice :).

    Now that I've used it for a few months I'd never go without it.

    Since the dizziness and lightheadedness have been increasing I've asked my ME doctor for a wheelchair Rx.

    I'll overthink that too and take my time to choose one because I'll need to make my husband and daughter swallow the pill, psychologically speaking.
    I'm preparing the ground so to speak ...

    If you get the Rx from your doctor you can get a cane for free from a Goodwill store with it and then maybe paint it in a nice pattern. I know that you're quite a talented artist ;).
    Nielk likes this.
  14. Calathea

    Calathea Darkness therapy

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    Walking sticks are pretty cheap even without a prescription, surely? The NHS ones are depressing and not very good anyway, so I bought myself one once I was sure it was helping.
  15. Pinkheaven

    Pinkheaven

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    Mine was only 15 euros and its foldable.
  16. Calathea

    Calathea Darkness therapy

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    I've bought lovely ones for £10-12.
  17. NK17

    NK17 Senior Member

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    Just wanted to add that the reasoning behind getting a Rx for the walking cane and for the wheelchair is an eventual future application for disability.

    Although I loathe to think of it, the reality of living with ME calls for a well documented medical history and a well prepared case.

    I didn't go to through law school for nothing, certainly not for living way below my abilities ...

    This disease is like a mythological dragon and I've decided to look straight into its eyes!
    MeSci, Valentijn and Calathea like this.
  18. snowathlete

    snowathlete

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    [​IMG]
    hope no one is offended by this.
  19. NK17

    NK17 Senior Member

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    @snowathlete

    I personally find it quite funny :rofl:

    Humor keeps me from going "insane" and a good laugh is always the best medicine!
    snowathlete likes this.
  20. Valentijn

    Valentijn Activity Level: 3

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    Okay, a third reason I couldn't be trusted with walking stick :rofl:

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