Probably unique, but i don't like it!!!!!

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happymags
happymags Member Posts: 8
edited 28. Nov 2023, 14:04 in Living with arthritis
I am rather muddled and would welcome any advice...but please not too much criticism!!!
Age 8: 6 months hospital TOTAL bedrest, rheumatic fever. Lay flat, was fed and watered and not able/allowed to even read a book. in side cubicle on own. 6 months at home, learnt to walk again, but some sports banned due to heart condition....
6 years ago, diagnosed with rotator cuff, then Polymyalgia rheumatica, disease of muscles, put on steroids 20mg, reduced and got off for 3 months, then back on.
2 months ago, hubbie diagnosed with prostrate cancer and is now recovering from op. i meanwhile have struggled with swollen hands, rising from chair etc. Busy looking after hubbie so had given up swimming but dog ensured walking approx 3/4/5/ miles per day, one walk am, one walk afternoon.

As is my usual 'cure all' Boxer will work harder attitude, due to state of hands and wrists i added half mile swim to 'to do'list 4 times per week..which didn't help.
Gp visit. Steroids upped from 5mg per day to 40mg per day and blood tests and x rays. Osteoarthritis in neck, wrists spine and fingers. GP says reduce swimming to half mile twice a week, do things with hands in short bursts (i enjoy craft), and following vast reduction in swellings am reducing steroids 5mg per week till next appt in 3 weeks.
other people say answer is to keep exercising hands etc and am totally confused. What do i do?? Was about to stack load of wood as thought that would be good exercise, hubbie says lift weights (painful)...sat typing here with aching back and neck...totally muddled and confused!!!!!

And to cap it all, a bit stressed as Monday we will find out if hubbie needs daily radiotherapy, (me driving when if an arthritic flare it takes both my hands to turn ignition) and the builders start on the house, 3 month build, half roof will come off, no central heating but just wood burner etc etc ...

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi happymags
    Welcome to the forum, what a lot you have been through both you and your Hubble, you are in the right place everyone on this forum has Arthritis of some kind they are also understanding and encouraging people who will try and help in any way to make you feel part of the forum the most popular forums are Living with Arthritis and Chit Chat
    All the best Christine
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Happymags, what can I say? Let me start with some virtual hugs ((( ))).

    You have gone through / are going through a great deal. I know because I've been through some of what you describe. I was diagnosed with 'rheumatic fever' at 11. I was always told it could affect my heart but, frankly, at 72, my heart is probably one of my best bits. At 15 I was diagnosed with 'Stills Disease' which morphed into RA. Which gave rise to OA as there were no decent meds about at the time for the RA.

    You sound to be a very strong person. A very determined person. And that is both good and bad. Determination can get us through some really, REALLY tough times. I know. It has done for me. But, there is a very fine line between determination and stubbornness which I keep straying across. Maybe you do too.

    All I know is the very valuable lessons that life with arthritis has taught me. (i)Arthritis thrives on stress. (ii)Adapt and survive.

    We simply can't carry on as if we didn't have it. There be dragons, as the old maps used to say. We have to concede the smaller battles in order to win the larger war.

    What does this mean for you? Well, I think I'd listen to your GP more than your friends. Some things have to be let go of and your craft just might, at least temporarily be one. Yes, we need to exercise our arthritic joints in order to keep muscles strong and supportive as that way they will do their job, we will have less pain and our joints will deteriorate more slowly. But, there is good and bad exercise. If all exercise were good, RSI wouldn't exist. The trouble with 'normal life' exercising is that these jobs don't exercise all the muscles only some. Here are some hand exercises from a reliable source https://tinyurl.com/yaul6e5b . (I tried to find some on our own site but couldn't. Maybe one of the Mods could help?)

    This, of course, is time consuming. Time is precious. But your health is even more precious, especially with your husband's as compromised as it currently is.

    You;'re going to hate me for this but my advice, born of years of unwilling compromise, is to get someone to help, at least temporarily, with the dogwalking and to put off the builders at least until your husband is in a better situation. I've not had radiotherapy but I have had chemo. (Breast cancer, years ago.). I felt utterly exhausted with it. As if I had flu. Every movement was an effort. And, because I wasn't so mobile, I felt the cold much more than usual. (My husabnd reckons I'm an eskimo as I don't usually feel the cold.)

    As for the car ignition – get a key turner https://tinyurl.com/y9otbxfn . (Other shops are available. Probably Amazon even.) I used one throughout my driving years. And, if it's too much, use friends and taxis. There is, almost always, another way. Be inventive.

    And, good luck. I really wish you both well. In every sense of the word.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • happymags
    happymags Member Posts: 8
    edited 30. Nov -1, 00:00
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    Thank you so much for your reply and encouragement. I am having a good day today and managed to get quite a bit done with arthritis gloves, and am even doing some crafts. I think varying the activity helps enormously, rather than sticking at one activity till its finished. Hopefully, this will help. Ready for builders Monday and we have waited 2 years so can't put them off. Have arthritic cutlery ordered, and have decided basically that I just need to do what I can and ask for help if necessary...
    Will use gloves for heavier work/ carrying etc, and try and go without otherwise, but replace if needed or pain strikes. Will do swim twice per week, and do dog walks unless hubbie wants to...if he doesn't, he cooks me porridge to take with all the blinking steroids!!!! He rarely comes in afternoon as he then does his own half hour exercise session on machine to try and get bladder control back. Lets hope Monday goes well...will drive him for radiotherapy if needed and am able - otherwise will call on friends and hospital transport, for which gp has given backing having seen hands when inflamed!! Happier today...need to take things day by day I think and just do what I can...and STOP if struggling!!! t4591 t4591 t4591 t4591
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Sticky and happy mags,

    I did find some hand exercises, but it was tricky :? I went to the lovely Veritable Answer 'bot' (Virtual Assistant), someday she will be Venerable once her code has learnt all there is to know :) and typed in hand exercise.

    She found 3 exercises, all replicated in your link Sticky so I’ve not reproduced them here. I also learnt that if you click in the 'communication area' it goes bigger and you can save the conversation/exercises out as a pdf

    Great to meet you happymags, you are a strong loving person, in a tough situation, and you are doing great. Get help wherever you can, have you thought of an assessment by social services? They can help with adaptations and alterations for both you and your husband.

    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, you do have a lot on your plate, I don't envy you! I took a year to come off prednisalone, it was hard work but worth it for my overall health.

    I was completely floored as a child by severe asthma - and the severe eczema wasn't much help either (this was back in the 60s, the creams and inhalers had yet to be discovered and nobody knew why I had what I had or what caused the extreme reactions). Having been born with auto-immune nonsense the arrival of psoriatic arthritis in 1997 (accurately diagnosed in 2006) and then an OA diagnosis in 2011 merely confirmed what I realised aged eight: my life was never going to be up to much. :lol: As I have steadily deteriorated over the last twenty years I have steadily carried on with my ABC of life: adapt, believe and compromise. We each have to find out own ways of coping and managing our conditions, arthritis-wise I prefer the OA as it is more honest in how it presents: I know what it is going to do and when it's going to do it and, to a certain degree, I can exercise some control. The other is controlled by medication but still breaks out of its containment every now and again.

    Do a little and often, rest and recuperate as and when. Pacing is a good strategy but it can be very hard to do. I think I am right in thinking that your hands are badly affected, have you tried hot wax baths? Obviously the relief is temporary but every little helps. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    You do sound to be living up to your username more :wink: and that's a very good thing. I hope that has continued through what was always going to be a difficult day. I'm sure you'll sort things out well as I can see you're already good on the theory óf how to live with arthritis - pacing oneself, calling for help etc. The practice is, of cóurse, far more difficult :lol: Take that from someone who, after well over 50 years óf it, still gets it wrong at times - sometimes deliberately so :oops: But, we have to live a little. I'm sure you're on the right track but remember we're always here for a virtual hug or a kick up the backside :lol: Sometimes it's hard, even for us old hands, to decide which we need :D

    P.S. Yvonne, thanks for your efforts. I'm glad it's not just me :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • happymags
    happymags Member Posts: 8
    edited 30. Nov -1, 00:00
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    So far, so good....but SOOO frustrating as I want to join the builders and yes, my wrists feel so weak still. My hubbie got all clear from cancer on Monday, which is terrific news and we are both adapting to the 'can't help' syndrome...me by trying to get out of the way for a while during the day. This is the second day of builders and we have two months to go!!!!!! Did a bit of craft yesterday, so just going on slowly and surely...steroids down to 30 this week and gp at end of month. Will see what happens...cutlery, key thing and gloves bought...will look into wax! Many thanks for all your help!
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    That's great news about your husband. I'm very pleased for you both.

    Now, if you 'want to join the builders' just buy a Lego set :wink: Curb your instincts.

    Seriously, I think you're doing well. Keep it up but allow for the down days. There's no shame in treading water for a while.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • happymags
    happymags Member Posts: 8
    edited 30. Nov -1, 00:00
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    Love idea of Lego!!!!! :lol::lol::lol: