Feeling a little lost

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OXO888
OXO888 Member Posts: 4
edited 29. Aug 2019, 08:17 in Living with arthritis
Hi everyone,

I've only just joined VA today with some hope that I will be able to learn more about this awful medical condition.

I dont have OA myself but i am seeing my wonderful mum suffer with it daily and i am finding it difficult. She still works over 30 hours a week because she cannot afford to give up work, but i fear that her work is contributing to her condition worsening. She has gone down hill fast over the last 3 months or so, and she is already sleeping the clock around on her days off.

She wants to stop working but shes 64 and will not get her old age pension until shes 66, so she has 18 months left to work. It doesnt seem a longtime but i'm worried that by the time she gets there she'll be in no fit state to have any quality of life. She is in pain daily despite being on high dose morphine patches, she has started to fall too (in the bath and when boarding public transport to get to work)

She has also recently told us that she has numb hands and feet too!.

I am worried the numbness is indicating that the OA is now in her spine and pressing on her spinal chord!! Due to this she is constantly dropping things on the floor and then having to carefully bend to pick them up, and shes extremely unsteady on her feet. I am seeing red flags and am waiting for that phone call to tell me shes had a serious fall/injury, and I feel helpless.

We are looking into PIP or some benefit to allow her to finish work but we dont know if she'll qualify because she's still actually working (god knows how!) and i also fear that even though her job is causing her physical pain and is draining her of her energy, it is keeping her moving and if she doesnt work, will this be worse?

I read that exercise is very important for OA sufferers and work is offering her this at least, but she's deteriorating and is in an extreme amount of pain.

I just feel a little lost and helpless and dont know what the best course of action is at this point.... Thanks for being a sounding board!

xxx

Comments

  • OXO888
    OXO888 Member Posts: 4
    edited 30. Nov -1, 00:00
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    webmanager wrote:
    Hi
    it's lovely to meet you and I am glad you have found us. It really does sound like your mum is having a rough time and it must be extremely hard for you to watch her being in so much pain.
    I have a few suggestions for you. Could you go with her to see her GP and discuss her pain management as you say it is clearly not covering her. It might be easier for you to ask the questions including why she is experiencing numbness in her hands and feet. It would be important for them to know that she has been falling over and dropping things as this might help them to
    Also it might be good to get a community occupational therapist to come and see her to give her some equipment that might help her at home.
    You are already doing so much for your mum by being so caring and being there for her. It may not feel like much but believe me those of us with arthritis do appreciate it. Let us know how you get on and ask as many questions as you like. It might also be worth phoning our helpline free on 0800 520 0520 Monday–Friday, 9am–8pm. I am sure our members will also support you
    Best Wishes
    Sharon
  • OXO888
    OXO888 Member Posts: 4
    edited 30. Nov -1, 00:00
    Options
    webmanager wrote:
    Hi
    it's lovely to meet you and I am glad you have found us. It really does sound like your mum is having a rough time and it must be extremely hard for you to watch her being in so much pain.
    I have a few suggestions for you. Could you go with her to see her GP and discuss her pain management as you say it is clearly not covering her. It might be easier for you to ask the questions including why she is experiencing numbness in her hands and feet. It would be important for them to know that she has been falling over and dropping things as this might help them to
    Also it might be good to get a community occupational therapist to come and see her to give her some equipment that might help her at home.
    You are already doing so much for your mum by being so caring and being there for her. It may not feel like much but believe me those of us with arthritis do appreciate it. Let us know how you get on and ask as many questions as you like. It might also be worth phoning our helpline free on 0800 520 0520 Monday–Friday, 9am–8pm. I am sure our members will also support you
    Best Wishes
    Sharon
  • Airwave!
    Airwave! Member Posts: 2,468
    edited 30. Nov -1, 00:00
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    Hi oxo888, you have a lucky mum to have you around. You've answered most of your queries, the missing answer is 'in moderation'. yes work can be good for the mind but not to the point of overdoing it. Yes, exercise is very good for us to stabilise joints and have less wear but in moderation. Regular Exercise may help with energy levels? Heat pads or wheat bags are excellent ways of reducing joint pain, comforting as well.

    Have a look at mobility benefits, they can be used for whatever and may at least take some worry off your mum, a blue badge would mean easier parking and less hassle when using the car?

    Next stop GP, ask for a referral to the Pain Management Clinic and MusculoskeletalTeam clinic.

    Stay cool.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I began my first arthrits when I was 37 and then OA was diagnosed in 2011 when I was 53. Knowing why I have it does not help or make it any better but I do know when it is going to be harder which does.

    My OA affects both ankles, both knees and both hips (it is elsewhere too but they are the key mobility joints). I have been using walking aids since 2002 and am sure that has made a difference in slowing its rate of progress.

    I am not surprised your mum is sleeping a great deal, arthritis of any kind saps one's energy as the body is working harder to achieve less. I know when my auto-immune arthritis is flaring as my tiredness levels increase and it is a different kind of tiredness to the OA kind. Morphine can also contribute to tiredness as it is an opiate, it doesn't take the pain away from you, it takes you away from the pain. Pain is a fact of life with arthritis, another fact is that nothing, no matter how strong, adequately deal with it.

    Benefits-wise I am being transferred from DLA to PIP (its replacement) and fully expect not to qualify as I meet all its mobility measures thanks to using my walking aids. It is a benefit for those in work and unlike my lifetime DLA award is stopped once retirement age is reached which is no doubt why I had to make a fresh claim. I am now 60 and retired due to my arthritis, another reason why I won't be awarded it.

    There are between eight to ten million arthritics in the UK the majority of whom have OA - I am sure its ubiquity works against it. It does affect many individual lives, and the lives of those around that individual, because it is so common people think they know what it is and what it involves but in all truth they have little idea. If you want to reply then click on the button under the reply box, not the one in the reply box. Doing the latter just repeats the reply, it is possible to add your comment but I've never done it so don't know how. Doing the former brings up a clear screen on which to type, then press submit. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Kitty
    Kitty Member Posts: 3,583
    edited 30. Nov -1, 00:00
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    Hello, I know you might think you are not giving your mum much help. But she will appreciate the smallest assistance you provide. We have a young neighbour who kindly pops to the shop for myself and my husband for 1 or 2 small items. This help is invaluable, and she will never realise (although we tell her regularly) how much this means to us. Another thought, as your mum, she may feel guilty for accepting your help (although she needs it desperately) mums (and dads) feel they should be the carers, not their children. But as you are a good and caring dsughter, you realise that is nonsense.

    I've had RA since I was 36 and OA for about 5 years (I'm 68 now). PIP can be claimed even if you work, so it would be worth applying on her behalf. I'm sure the helpline would provide you with any literature you willneed, and you can always ask Citizen's Advice for help filling in the clam forms. Good Luck. :D

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein