Accepting this disease

SusiM
SusiM Member Posts: 87
edited 26. May 2019, 05:17 in Living with arthritis
Hi
Ive been just recently diagnosed with arthritis probably RA and its been quite an emotional time accepting and adjusting to my new limits. Im afraid of arthritis because l saw my aunty suffer from it and end up severely disabled. Im afraid that my life will take the same path. Adjusting to my new limits has been depressing. Being exhausted all the time and being too sore to do the things l want to is upsetting. Im 44 years old and l dont know if this is young to have arthritis but l know even poor children suffer from it and l feel unfair being so down about my situation. How much is this going to affect my quality of life? Will the exhaustion ever go away? Will l end up like my aunty? So many concerns.
Thanks for reading :)

Comments

  • stellabean
    stellabean Member Posts: 307
    edited 8. Dec 2020, 11:39
    Hi SusiM sorry you have had to find us and that you are having a hard time. It is quite an adjustment to make dealing with the symptoms and the fear of the unknown but things have improved in the treatment stakes hopefully since your aunt was diagnosed. There is more emphasis on early diagnosis and treatment than in the past. If you have RA there are treatments but it can take time for the right formula to be found. RA is a sneaky little **** it behaves differently in nearly all it's victims so there is no one size fits all in the treatment. It is as individual as we all are.
    It is alot to have to take in and process and to accept that your life has been changed. I am realtively new to this myself being diagnosed with RA in August last year but I was told 20 years ago when I was 40 and following an assult that I had spinal degeration ( the spine of an 80 yr old) , damaged discs in my neack and OA. So I have at least come to terms with the changes to my life that have occured. I went through the whole gambit of the stages of grief for the loss of my way of life and being forsed to make changes that I didn't want to because of cirunstances beyond my control.
    The exhaustion in my experience doesn't change but I have learnt to accept it and try to work with it I have to admit I am not always sucessful when I am reluctant to stop what I am doing and rest when my body tells me to it reminds me who is boss and I end up having to rest even more.
    I hope you get the answers you are looking for, I know there are many people on this forum who can give you the benefit of their experience but no one can tell you how this will impact your quality of life unfortunately we can't see into the future.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I began aged 37, you have begun aged 44. The youngest I have come across on here was 18 months old, others do not begin until their 50s, 60s maybe even older. So what? They don't matter but YOU DO because this is YOUR life that is being affected, YOUR life which is changing beyond all reason, YOUR body feeling the strain of disease. Do not waste your time feeling guilty for feeling upset, bewildered and scared, you have every reason to be. Let others row their boats, you concentrate on rowing yours as best you can and hopefully we can help you learn how to do it as well as possible. We get it because we've got it, in my case for years. I am more than my disease, it does restrict me but it does not define me. Over the years I have learned my arthritis ABC, adapt, believe, compromise but they're not easy lessons to learn especially if all of this is new.

    Accepting the diagnosis of arthritis has been likened to the stages involved with the grieving process and to me that makes a lot of sense. You are losing an aspect of your life you have always taken for granted so there will be anger, denial, bargaining and whatever the rest are (I've had a long day, am very tired, in pain and words are deserting me). I'll be back tomorrow. DD
  • Airwave!
    Airwave! Member Posts: 2,428
    edited 30. Nov -1, 00:00
    Your emotions will tend to follow the course of your illness, at times more than other times, however the ups and downs of them is as natural as life and we must learn to accept this. The importance of 'being' cannot be exaggerated enough, learning to have a positive outgoing character will help your arthritis more than any medicine.

    Allow yourself to say 'no', where needed and don't batter yourself over things, give yourself a break.
  • SusiM
    SusiM Member Posts: 87
    edited 30. Nov -1, 00:00
    Thanks so much for your responses and support. You people are battlers with great attitudes. I hope l can be the same one day. It currently feels like this disease is defining me. Im still hoping it just disappears from where it came. Whats the 'believe' part of the abc of arthritis?
    I havent had a chance to ask my rheumatologist is it dangerous to battle this disease without medication?
    Thankyou lovely people t69044
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    SusiM wrote:
    I havent had a chance to ask my rheumatologist is it dangerous to battle this disease without medication?


    If we don't take the meds we give the disease free rein and life is far more of a battle than it needs to be. I was diagnosed back in 1961 when modern DMARDS weren't around. As a result I required knee replacements twenty years later and I had the very painful experience of having my wrists and ankles fuse themselves over time - mostly over the time my sons were growing up :roll: But, I've been lucky. I've never developed Interstitial Lung Disease or any of the other internal organ problems which it can bring.

    Inflammatory arthritis is a lifelong companion. We might, occasionally, have short periods of remission but it won't go away and I think we have to accept that before we can live 'comfortably' with it. Acceptance won't come easy if you've been used to a body which, on the whole, did as requested and, in fact, it's an ongoing thing but essential. Otherwise we're just hiding from the facts and the facts will get their own back eventually.

    But life with arthritis, and its meds, is not all doom and gloom. I've had it for going on 60 years and I've had a very good, satisfying life. My life might have been very different if I hadn't had it but who's to say whether it'd have been better or worse? RA has definitely taught me some valuable lessons which, given the option, I'd have ensured I avoided learning :lol:

    This is a long thread on 'acceptance' which you might find helpful.
    viewtopic.php?f=8&t=23619
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    The believe part of my ABC means that I have learned to believe I can still do what I want and, to a certain extent, what I used to, but in a different way thanks to learning to adapt. The compromise part is learning to stop when I think I can do more and preparing for big events by resting and being prepared to rest after. If you think you can, you will. If you think you can't, you wont. I am much more than my disease, always have been, always will be. If some pigging little gene thinks it's going to beat me it can think again: in one sense I've already beaten it by not passing it on, ya boo arthritis.

    You can of course not take the meds then find, over time, your body twisting and distorting, your shoulders dropping, your reach being foreshortened, increasing pain, the development of osteoarthritis, damage to your heart and lungs; the list of the joys untreated rheumatoid arthritis can bring goes on. When I first went to rheumatology I was amazed at the physical distortions on show, I knew that arthritis could damage the joints but to that degree? The elbows and hands like mountain ranges, the calipers, the clunking great orthotic shoes, the sticks and other aids. These were the people who had not had the medication because the medication had not been created, who might have had joint replacement but whose replacements were failing. I now stand out in the clinic as the one needing walking aids, I do not have any visible joint distortion but sure do on the inside.

    Thanks to beginning the meds with far too little, far too late, I have around forty affected joints, some with the PsA, some with OA and my knees have both (I only began with one :lol: ). Everyone else strolls in and out of their appointments with ease and possibly without too much pain because they are younger, diagnosed quicker because things have mightily improved on that front and so on the meds sooner. I can get about, but not for very long or very far. I am in pain 24/365, tired 24/365 and now experiencing the other inconveniences of ageing but I know I would be in a worse situation without the meth, the imraldi and all the other stuff I've tried over the years. Luckily I had enough nous not to bother with the copper bracelets and other assorted junk because they do nothing to reduce immune system activity but are marvellous placebos for OA - there's nothing wrong with a good placebo, the mind is a powerful thing.

    Auto-immune inflammatory arthritis is a big disease and it needs big meds. I am thankful the meds are there, my life was saved by the creation of asthma inhalers but on my very bad days with the arthritis I wish it had ended when I was eight. My mum's vase of irises tried to kill me (I always remember that at this time of year) and if they had I wouldn't be enduring this nonsense too. It didn't, I am, so what? Faulty genes are to blame in my case but this stuff can start at any time, for any reason: no-one is exempt, not even you. This is hard for you as you have had no preparation whatsoever but it was and is far worse for your Aunt: you have the opportunity to live a very different life to here, albeit with the same disease, if you so choose. DD
  • SusiM
    SusiM Member Posts: 87
    edited 30. Nov -1, 00:00
    Thanks again everyone. I guess time heals all wounds. I will learn to accept this like lve accepted other hardships in life.
    Stickwicket can you pls post that link again. It didnt come through right.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    How odd!

    Let's try again. viewtopic.php?f=8&t=23619 .

    If it still doesn't work come back on here, please. I'll let the Mods know.

    P.S. I've just tried it and it doesn't. Mods, can you work some techie magic, please?

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