Frustrated

At being stiff and in pain. Can't wait to see the prof, but that's not until December. It's been over two years of misery.

I joined my community choir a couple of weeks ago. It's a hoot! However I was so blinking stiff standing up. If I sit down I need a fork lift truck to lift me up again.

We always start off with physical exercises too. Only light exercise, but even that's a challenge. Upsetting really. It was only a few years back I did tge splits as a party trick! :-)

Good job I have humour.

10 Replies

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  • I think we sometimes get so used to just doing our best to live with this disease that sometimes , we forget how much we’ve lost through having it. It can be hard when things remind us.

    It sounds like you’re having a rough trot of it. December must seem so far away.

    I really hope that when you see your consultant / prof , that there is some relief provided to you.

    I ansi hope that after fighting to get that bed up , you manage sine quality sheep tonight.

    Marie

  • Thank you Eiram50

    Yes, it's been a grim few months...well years actually. I hope I'm going to bebe given a med that works.

    I only work one day a week supporting a lovely disabled chap in the community. I would so love to do more, but I get so tired. Pushing a wheel chair rounds kills my hands. My issues at tge moment are wide spread tendonitis and anaemia.

    Still, I live in a lovely flat in a great community. Not always easy to be grateful though is it.

  • No, it’s really not. There are times when things generally , just feel bleak.

    It’s hard to remain optimistic in the face of constant pain and crippling fatigue.

    I really hope that you find a med that’s going to be effective and relieve you from the heavy

    Loaf you’ve been carrying.

    Take care

    Marie

  • I don't know how people qualify for service dogs but I've seen the ones that can load and unload a washing machine etc. and nudge people out of bed.

    I doubt dogs can be trained to help you out of a chair but in the same way that they can sense diabetics are about to have a hypoglycaemic episode or epileptics an absence/episode, I wonder if they can detect when people have been standing/sitting too long without flexing or moving to ward off stiffness?

    I know cardiologists sometime advise people to behave as if they live with a dog, even when they don't. E.g., walk several times a day, take time out to play, keep regular hours. Maybe some people might benefit from living as if they have a super-alert service dog, reminding them that they're not moving enough etc. :)

    Would it help you to stand up during the choir practice if you had the option of a support that you can semi-kneel on and can discreetly switch knees when breaks in the performance allow?

  • I've got a brilliant shepherd dog. If it wasn't for him I reckon I'd be in a seriously bad way, both physically and mentally. I walk four times a day with him. If I can't walk far I sit down in the park and wang a ball for him.

    I've become much more sociable since I've had him. He is an extraordinarily beautiful/unusual looking dog. He has one blue eye, one brown. He loves people, and is very popular in the village (I'm just the moron on the other end of the lead!) However, people talk to me because of the shepherd....whether I like it or not! :-)

  • Everyone round here knows our Aussie's name - just not ours! He has a big fan club... (if yours is a Merle with lots of white, do be careful about breeding him as there's a genetic problem linked to the blue eye - just in case you didn't know)

    December's nearly here - the Christmas stuff is already in the shops.....

  • It's Ok Helixhelix, I'm afraid he's had his Christmas baubles removed. Poor doggo:-(

  • Hi

    I also sing in a choir. I bought myself what is called a 'flip stick' which I use when standing. It has made such a difference. If you google 'flip stick' it will bring up several stockists, including Amazon.

    Do keep singing as it has been proved to be so good for us.

    Thelma

  • Thanks..I'll have a look:-)

  • I have you tried to phone his secretary to try and get a sooner appointment, possibly a cancellation, that’s what I often do, in fact I have just done so last week as I haven’t seen my Consultant since March. My consultant has that many patients that I was told that it would be next year, but I insisted and it worked.

    When you do see him be insistent on what medications you want, I take Tramadol & it helps a little, so ask if he will try you on something stronger, good luck.

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