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Does anyone else get disheartened?

I have severe OA in my right hip, mild in my left and referred pain in both of my knees. At 56, I've always considered myself fairly active. I don't drive, so walking everywhere was second nature to me until now. I was diagnosed last October, had what I thought was a flare up just after Christmas (which has never improved) and am now, despite trying to be positive and optimistic, feeling very down and sorry for myself and sick of not being able to do the things I could do before. I drop things constantly, including the stick I use to help me walk. I can't bend my knees to pick anything up at floor level. Almost everything I do, has to be done one handed, whilst holding my stick and I have reached the stage where I feel so fed up and annoyed with myself. I cry a lot, which I know doesn't help the pain, but I feel so guilty having to ask my daughters for help to do things I used to do for myself. Sorry for the rant, but I wondered if anyone else out there, suffers from the frustration that comes with OA and if they have any tips for overcoming it?

Answers

  • JewelsJewels Member Posts: 82

    Snap know exactly how you feel I have 5 kids and have always done everything and like you walked everywhere I have those days where you cry sometimes it's good to let it out just be easier on yourself do what you can and take time out and do something that you enjoy like watching a film or sitting in the garden or something it's not your fault so be easy on yourself your daughter will understand 😁

  • Whiskey26Whiskey26 Member Posts: 31

    Hi @Jewels

    Thank you for your message. I'm glad I'm not the only one who feels like this. Although I don't know what age your children are, if they're quite young, that'll be hard for you. We don't realise how we take things like walking and bending for granted, until we can no longer do it.

  • JewelsJewels Member Posts: 82

    My youngest is 13 but she still loves mum doing everything I don't think she wants to think that I'm not capable anymore cos I was always 100 miles an hour person it just takes time for everyone to adjust including yourself you'll be OK mate and if ur not come on here and have a chat or a moan hehe

  • Whiskey26Whiskey26 Member Posts: 31

    Haha! Yes I shall!!

  • LilymaryLilymary Member Posts: 743

    Hi @Whiskey26 and @Jewels , oh boy can I relate! my hip packed in at the start of the pandemic (great timing) and I'm reduced to needing a stick whenever I'm out and sometimes round the house. I used to be very active, in Jan 21 I was hill walking, but now it's literally all I can do to get round a supermarket, buoyed up by handfuls of industrial strength pain killers. I get referred pain all the way down my left leg, my right leg is getting fed up with doing all the work and joining in the general winge-fest, and my back's now playing up from walking so weirdly for 12 months. My hip hurts whenever I do something, and the rest of the time when I don't. It wakes me up at night just to remind me it's there, and is determined to make me as miserable as possible. It's completely ok to feel fed up with this, because it is awful.

    It is also completely ok to ask for help. If your daughter was in pain, wouldn't you be there for her? Explain to your family how bad your pain feels, where you feel it and when, and tell them how it makes you feel sad, frustrated, tearful, depressed, defeated and useless, and how you would really like to do everything the way you used to, but just can't anymore. It's really difficult to get the effects of this across to people who don't know what it's like to be in constant pain, how it affects what you can do, and how exhausted it makes you feel, but if you don't tell them they won't know. It's their turn to support you now. We may hate it, but that's the reality of the situation.

    Meanwhile there are probably some things you can do for YOU. You'd probably benefit from the Let's Move with Leon programme, which gets the rest of your body loosened up (it's so easy for everything to tense up when you're in pain and when your odd posture affects the rest of your body), It may even help build the muscles that support your hip, reducing your pain. They're also quite fun, and you can make them as gentle as you feel you need them to be, or a bit more "strenuous" if you feel you're up to it.

    You also sound like you need to schedule in some rest time. If your body is constantly working, you are constantly aggravating the damaged joint, so it never recovers. If I have to do a full day on my feet for work, I programme in a couple of days on the sofa afterwards (cos that's the effect it has on me). Allow some rest time every day, even if it's just the evening. This is NOT being lazy, this is because you NEED it and it should be entirely guilt free. You need this as much as you need to go to bed to sleep at night. People with arthritis can't carry on pretending they're ok indefinitely, the need for rest is a fact of life now.

    I find a hot wheat bag on my hip helps if I've really overdone it. I also prop myself up on a strange arrangement of cushions etc in bed that puts my wrecked hip in a comfortable and supported position. Experiment a bit and see what works for you.

    Also, find time to do things you enjoy that take your mind off the pain. Depression is arthritis's bed-fellow I'm afraid, so you need to nurture your mental health and well being as well. Find things to do that lift your spirits a little, or that give you a sense of peace and relaxation. Sometimes that will be spending time with friends, or doing a spot of light gardening, a bit of crafting/knitting etc, or just sitting in front of a movie. But it needs to be done, just like you need to eat and drink.

    It might also be worth speaking with your GP about pain relief, or get yourself referred to a pain clinic. You haven't said whether you're waiting for surgery, but if it's affecting you this badly, maybe it's time this was considered?

    I hope these help. They've certainly helped me get through the last year, when my hip has got worse and worse at a rate of knots. I finally have a date for surgery, and without that in sight, I think I would be on the verge of despair.

    Sending hugs xx

  • JewelsJewels Member Posts: 82

    Thanks @Lilymary I do the same thing with my pillow and have just got a wheat bag they're great arnt they like you said it's always going to be with us to true xx😜

  • Whiskey26Whiskey26 Member Posts: 31

    Hi @Lilymary

    Thank you for your message. You certainly sound as if you're having a rough time with it all. Everything you've described, sounds just like me....my 'good side' coming out in sympathy with my bad side, broken sleep etc. My daughters have both been so good. My youngest is 25 and lives with me, so she is on hand to help me if I need it. I have done Week 1 of Leon's exercise programme, some of which I could do, some I couldn't, as it hurt too much. I may well invest in some wheat bags, I use hot water bottles at present and I have a Contour leg pillow for my hip in bed, which I recommend. I haven't slept through the night for months. I love gardening and am looking forward to pottering in the summer. I have a small courtyard garden which is relatively easy to look after. I invested in a kneeling pad with handrails, so I can pull myself up easily after weeding. A worthwhile investment. I've been told I'm too young for surgery, so for now, it's exercise and painkillers for me! I'm pleased to hear you have a date for surgery and I hope it's not far off? Thank you once again for your help and advice xx

  • LilymaryLilymary Member Posts: 743

    Sadly I couldn’t manage the exercises either, I found they made my hip worse, which was really disappointing, as I used to go to (gentle) pilates and yoga every week until March 2020, and lockdown No 1 coincided with my hip packing up. The rest of my body has locked up now, and I would love to get everything moving again.

  • wazz42wazz42 Member Posts: 120

    Hi @Whiskey26

    I have been exactly where you are now! I called it my out of control time. The OA and everything else was in charge not me at all. I could sit and go through y joints and catalogue where the pain was and how horrible it was too. I didn't want to 'make my life easier' with aids/help, I didn't want to put up with it I just wanted it to go! It didn't.

    Definitey come on here to rant - as often as you need to, once it's been acknowledged you can move on.

    Eventually I think we have to realise that we have lost a lot but then to think about what we have and what we want for the future. I decided I wanted to be happy, to play with my grandchildren, to get out and about and to keep up with my garden hobby. That meant having aids, and having lots of talks with my oh, he had lost all those things too, but he didn't care, he remembered I was still me, it was me who had forgotten. It is slow, there are days which are just to be waited out until tomorrow but I enjoy life. My g'ch love their Mam-gu and love coming round, I think we talk more and do more craft type things than I maybe would have but it's a great change for the children.

    I think you must get a GP who is actively on your side, check out all the GPs in your pracitise and find one who can relate to you. Mine even has a magic wand which I need sometimes (I think she has it for the littlies but it helps me as well, even if it is just a feather duster!)

    There will be exercise you can do, you can adapt the Exercise with Leon or find one more suited to you, he is doing other videos now too that may help you. The trick is to finish BEFORE you have made your symptoms worse. Clearly trial and error but you can do it, take it slowly and take it joint by joint. I have a little routine I do before I get out of bed, it helps me to decide what to wear, pull on or buttons, whether I need to tweak my plans, OA loves ruining plans, and it warms my joints ready to get going. At bedtime I try to think of one or two things I enjoyed that day, it's easy to lose sight of those and it might help you have some happy dreams too.

    I know you will do it, stay with us so we can walk this tricky bit with you and then stay to help the next ones who will need help too

    xxx

  • Whiskey26Whiskey26 Member Posts: 31

    Hi @wazz42 thank you so much for your message. It's nice to know there are people out there who understand how I feel. I would love to think these people lived nearby, as I'm sure once we're back to normal life, it would be so nice to meet in person. The hardest thing for me I think, is the realisation that things may not ever be the same again. Will I ever walk outside without a stick, will I ever be able to tie laces again etc. These are things I can't seem to accept. I cry for the life I once had, which I know is silly because there are people much worse off than myself. I've had to give up my part time job as an office cleaner, as obviously bending was out of the question and was a big part of my job. That hit me hard, as I'm now sat at home surrounded by puzzle books, magazines and knitting. This is very relaxing but I'd give the lot up, to be able to walk, bend and work again. I'm interested to hear what your routine is, before you get out of bed? I'm interested in any new thing gs to try, as some of Leon's exercises hurt me too much xx

  • dufferduffer Member Posts: 17

    The original comment was like I had sent it! Sums me up completely - I was refused surgery for a hip replacement in 2019 - high blood pressure - thanks to the stand-in Consultant who frightened me to death with his warnings - no positivity. I cope with 2 ibuprofen a day and have had to stoop to 1mg diazepam every other day or so. I live alone and have only left the house twice in the last year. Luckily I don't get depression but I do suffer from panic attacks and fear for the future. the hip and knee pain are sometimes unbearable.

    Then I suddenly feel ashamed and beat myself up because there are thousands waiting for different types of surgery far more serious than my osteo and silly panic. I just want to be me again! Helen.

  • wazz42wazz42 Member Posts: 120

    Hi @Whiskey26

    It would be great to have friends nearby, when we can all get out and about versus arthritis does have some groups in different areas and I think they are looking to add to that, fingers crossed they get into Wales where I live.

    My morning routine is to move to my back, pull up one leg as much as I can, then push it down as far as I can and repeat and then with leg 2. I contract and release my joints, all the way up my legs, then my tummy and shoulders. Then I sit up. I stretch my fingers and roll them down my thigh so the fingers curl (they are not good at doing that on their own, I gently move my neck, a bad area for me just now so only until I can feel pain, then back, look up and down. I do the contract etc when I get into bed too

    Really though you need to work out your own routine, the trick is to do the exercise only until it starts to be painful, hold it for a second and try to work out where/what the issue is to see if you can mitigate it, if not you can plan your day around it and not be disappointed at the last minute when plans don't work out. Eventually you will get good at the 'daily exam'.

    I also have aids around to help me be independent - a kettle tipper, bathroom aids, lever to help me get out of bed, extra rails for stairs, even those outside in the garden - I have a 12 step and a 2 step option with a slope, very gradual, my oh has been know to ask if it's a 2 step or a 12 step day!

    Accept help, it's given with love and should be taken as such, however if I feel the need to peel the veg I can say no thanks and that is that, we all know I will ache or worse but that's my choice.

    I hope that will help you set up your own little ways to assess the day and help yourself, do be persistant with your GP to find out if the severty of your OA is such that an operation might help - I waited until 60 but I think I would have pushed harder because quality of life is a big consideration, as is ruining other joints while waiting to get old enough for a replacement

    xx

  • dufferduffer Member Posts: 17

    Whiskey26 thank you for your advice/comment. I do various exercises but have few aids around the house - kept falling over those I was given by the NHS.......I just use two sticks indoors and hope for the best! Helen.

  • Mike1Mike1 Member Posts: 1,325

    I live alone too and have OA almost everywhere. I suggest that you contact the Adult Social Care Department of your local Council, they will send an OT out to see you to see what aids you may need to make life easier for you around the house, they may also supply them too. I contacted them about 5 years ago and received a recliner, perch stools, wet room, handrails and other bits and bobs. They are coming again next Monday to measure me up for a new electric recliner. Well worth a try.

  • Whiskey26Whiskey26 Member Posts: 31

    Thanks @Mike1 for your advice regarding contacting my council for aids around the home. The most awkward thing for me, apart from stairs, is not being able to sit comfortably on the settee and not being able to get up off it very easily, so ideally I would like some sort of padded cushion to sit on and lean against, if there is such a thing?

  • Whiskey26Whiskey26 Member Posts: 31

    @duffer Hi Helen, I just use the one stick around the house although if I'm having a rare good day, I put it down and try and walk unaided. To be honest, I think since starting to use a stick to take pressure off my right side, I've actually made my left side worse! It wasn't painful at all on my left side, but it is now. I do have slight OA in my left hip, but I can't help wondering if this has been made worse because of using the stick and leaning onto my good side? Katherine

  • Whiskey26Whiskey26 Member Posts: 31

    Hi @wazz42 thanks for your reply. I will certainly have a go at a morning and evening routine and see how it goes. Once I'm up and mobile, I'm not too bad, although I do find I have to sit down after a while. Then after sitting a while, I have to get up. It's a vicious circle with me.

  • Mike1Mike1 Member Posts: 1,325

    What you need is what I have, an electric riser-recliner. There are loads available on the internet at a wide range of prices, beware of those supposedly specially for the disabled as in my experience all they do is raise the prices by a lot for no real difference; if you contact your Council like I suggested they may well offer you one like they did with me, worth a try anyway.

  • Whiskey26Whiskey26 Member Posts: 31

    I shall look into it, thank you.

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