Acceptance?

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  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    I remember when my symptoms changed from pain in two joints to more and then more joints three years ago. I was well into a stressed-out state with two wrists non-functional, severe pain, fatigue, failing marriage, loss of my dream job, and being told I could no longer work as a receptionist either. The list seemed to go on and on. Plus, I had no idea what was wrong with me. I was coached by my doctor at the time to try to manage my stress better which seemed completely impossible. Some of life's stressors of course, you have little control over, but I took the doctor's advice and tried to manage how I thought about being ill and the stress it caused.

    I don't know how it is for others but I flare easily from stress, so it has meant me really not allowing the anger and my own internal dismay to get out of control. It was an entirely strange idea to me that I could be adding to some of my own problems :idea: I really don't want to be the cause of my own flares! Of course I learned eventually, that other things cause me to flare too, but I think it was really good advice from that doctor. Turns out that it's work and I can put some of my more negative energy into working at it every day. This has had a very positive impact on me emotionally. I feel I have gained some control over my illness that previously I did not have. Managing stress is one small thing I can do in an otherwise uncontrollable situation.

    I hope this doesn't sound preachy, I don't mean it to. I thought the stress-flare connection was worth adding to the conversation. For some maybe stress doesn't cause flares? I know it's a biggie for me.

    Anna
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Ah Boomer, arthritis does (for some of us) thrive on stress. My husband and I have just had a dreadful six months involving two deaths and two operations (one each). The latest bereavement was my mother's death on April 10 and since the funeral on the 22nd I have been struggling so much with both the PsA and OA. Despite the meds controlling my PsA to a good degree it is making its ungainly presence felt in no uncertain terms. C'est ma vie. :wink: DD

    PS Harper? No offence taken. So many on here use the same term and I suppose it's a very obvious abbreviation - I must stop being so sensitive.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Airwave!
    Airwave! Member Posts: 2,471
    edited 30. Nov -1, 00:00
    Its my thinking that we get used to one pair of shoes and our joints start to settle down then we change our shoes or the shoes get worn and it upsets arther i.e. the way we put our foot down, the angle of our ankles/knees/hips etc and it starts arther off again.

    Acceptance is different for all of us, as is arthers path that we tread........
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    DD you do have more than your share of stress right now by the sounds of it. It's awful to feel your symptoms worsen and know the cause. It's really like being hit twice. So sorry, feel better soon.

    Anna
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Boomer13 wrote:
    I hope this doesn't sound preachy, I don't mean it to. I thought the stress-flare connection was worth adding to the conversation. For some maybe stress doesn't cause flares? I know it's a biggie for me.

    Anna

    It doesn't sound at all preachy, Anna. We're here to pass on any good tips we have. I think stress is an acknowledged factor in flares. It certainly used to be with me. Diagnosed at O-levels, next flare at A-levels, then finals. It's not rocket science :lol:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Too true. I think if it was rocket science we'd have a cure now :D
  • HARPER04
    HARPER04 Member Posts: 34
    edited 30. Nov -1, 00:00
    stickywicket wrote:
    As the mother of one very sports-minded son, who still plays cricket weekly at 42, I can understand how hard this must have hit you. I was never particularly sporty though I did like to play tennis and I had a lot of walking (and running) to do daily to get to and from school.

    Playing the piano was the first much-loved activity I’d to give up. It might well have been good for my fingers to continue but it was bad for my ears and everyone else’s too :roll: As arthritis has removed things from my life I’ve always tried to take up something else to compensate. Some of the ‘compensations’ proved better than the original activities.

    I’m intrigued as to why you’ve had to give up writing. I’ve dabbled in all sorts of things on the writing front and only found the arthritis seriously curtailed things in the early years when pen-holding and heavy typewriter keys were the order of the day. Now that we have touch keyboards and voice-operated software, is it not possible for you to resume this? We have a poetry section on Chit Chat. Why not post some of your poems on there?

    Arthritis is tough enough without any additional bitterness and angst. I do hope you can start to enjoy life again.
    Hello stickywicket I gave up my writing and poetry not by coming to a decision it came about by the amount of pain killers I was taking and still am I could not think, one of the reasons work was becoming impossible I couldn't get my brain to function I find it hard to concentrate and when iwas taking Morphine I was as they say Away with the fairies I now take oxycontin and oxycondone 130mg along with diazepam and still find it hard to stay focused but without the level of medication life would be difficult and you reach a level where your body becomes used to that amount of medication so you have to increase it so the circle begins again as I said the ideas just didn't come to me as they did before .
    The poem Unforgiving skin was one of mine

    Best wishes to you
  • knuckleduster
    knuckleduster Member Posts: 551
    edited 30. Nov -1, 00:00
    My thinking is, if you've accepted the pain of your arthritis and the limitations it imposes on your life, then you are indeed very lucky.

    My pain started over 23 years ago when my son was 6 and my daughter just 2 and I feel I missed out on so much. For instance, going bowling with them, playing tennis, cricket, etc in the garden. My son always said it didn't matter, but it mattered a great deal to me. Now, the parts of me that don't hurt are far fewer than the parts that do hurt, hence the activities I can take an active part in are far fewer than the ones I can't. My passion used to be gardening and I would get so much satisfaction from it, but now all I can do is watch my husband tending to the garden. And, for me, that is not sufficient and I do feel bitter at how my life has turned out. Thankfully my parents didn't suffer from arthritis and my sister and brother are equally not affected so. So why have I got it? Nobody can tell me. And now I pray every day that my two darling children will never know what I have been through and will continue to go through.

    Janet
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Janet;

    It's so rough missing out on all the lovely things, especially gardening, fun with children, etc. I really miss my gardening, too.

    I don't think us arthritis sufferers will ever figure out why we got our disease. It's a very random product of our biology and the environment. I don't think it has anything do with us as the people we are. I know that who we are has no bearing on why we got our disease. Just a random and meaningless side-effect of our biology.

    In my family, who gets the disease and who doesn't? It just seems to crop up severely every few generations, and then others only have mild symptoms. Completely random.

    I do know lots of healthy pain-free people who regularly and systematically do things that destroy their health. No one can help them realize what they are doing, the consequences to their health or make them stop. I find that equally, or more so, as tragic and meaningless as having the chronic arthritic disease I have.

    Anna
  • Airwave!
    Airwave! Member Posts: 2,471
    edited 30. Nov -1, 00:00
    In reality arthers path, over the short term, has the ups and downs of life, it is or appears to have a random nature, it may be controlled to a lesser or greater extent by medicine, lifestyles etc etc, but over a decade or more we ain't going to get better.

    To feel better is a much a part of the short term as to feel worse, this up and down nature of the beast is part and parcel of arther, as it is of life. Our mind is as powerful and as weak as it allows us to be, control of it is everything.

    Acceptance must be an on-going relationship with the truth of our chronic conditions as it changes.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Airwave! wrote:
    Acceptance must be an on-going relationship with the truth of our chronic conditions as it changes.

    Blimey, Airwave, that's a bit deep for first thing Monday morning but I think you're on to something. I like it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Airwave!
    Airwave! Member Posts: 2,471
    edited 30. Nov -1, 00:00
    eh? Think I may have had a 'medicinal whisky' last night when I posted, the clocks all wrong.

    I feel better than a few years ago when the pain started to deepen, the pain is worse but I feel I deal with it in a better way than I used to. I'm certainly in a positive mood more often, mind you with grandchildren around, they don't let you stop for much.....
  • Tank
    Tank Member Posts: 1
    edited 30. Nov -1, 00:00
    I'm finding it difficult to accept. I was diagnosed in February this year. Previously I had the honour to wear the globe and laurel and am a current serving Police Officer with two young kids. Not being the man I was 12 months ago is difficult to come to terms with. I have OA too and had a BHR on my right him in May. Still, I won't give up, we can't give up we just have to crack on as best we can. It certainly puts some perspective in your life.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hello Tank and welcome to the forum. I think you've had very litrle time to get used to this disease let alone accept it.

    Part of me wants to say you are exactly the same person you were before but also I want to say that no-one is the same as they were 12 months ago or, at least, shouldn't be as we're all learning every day. I know we'd all prefer NOT to learn about arthritis but I guess we don't have the choice. It certainly doesn't make you any less of a man, though. Dealing with this stuff day in and day out takes a lot of guts. I'm not the woman I was 50 odd years ago as a few bits have been replaced :lol: but it's not all been negative. You're quite right about the perspective thing.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Airwave!
    Airwave! Member Posts: 2,471
    edited 30. Nov -1, 00:00
    Hi Tank,
    I have been along the same path as you. Initially you only allow your mind to accept the next step that you face, I have found that you need to go beyond this and face up to what will eventually happen and enjoy what you have now, despite arther.

    The mind is our main weapon, mens attitude to themselves tends to get in the way of acceptance. Sorry if its a bit deep and stark, I have time to sort it out in my mind, I may not be right. 8) As I said earlier its a changing challenge.

    Keep smiling.
  • Amy86
    Amy86 Member Posts: 16
    edited 30. Nov -1, 00:00
    I'm not quite sure if I have 'accepted' my recent rheumatoid arthritis diagnosis (at the age of only 27) or whether I'm just in some kind of denial! When I was initially diagnosed, my upset at the diagnosis was far outweighed by the relief I felt at finally having a name for what was wrong with me! I was so happy to be told I'd be starting a treatment, rather than constantly taking painkillers.

    I think the realisation has still yet to hit me but I hope that when it does, I am strong enough to cope with it. I am lucky enough to have a fabulous family and group of friends around me so I know they'll see me through the difficult times to come x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Tank and Amy, it's nice to meet you both. You are both in the very early stages of this but one thing is true: arthritis does not change the essential person; you are both still the same people you were BD (before diagnosis). Arthritis of any type has an impact on us and those around us, but we must ensure that it doesn't make us angry, bitter or resentful. Those feelings do crop up every now and again, that's only natural, but they must not be allowed to become an habitual way of being. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Hi guys,
    I was speaking to my rheumy last week about acceptance. He said that the first few months - when the focus is on drug therapy and the improvements that they bring - is in a way easier to cope with. Then comes the period of acceptance when we realise that although we are "better" than we were at diagnosis (hopefully) the realisation comes that we will most likely not be as fit and active as we were before. I'm at this point, and finding it really difficult to deal with some days.
    I've seen with my son that its a journey, with some back and forth, but hopefully moving forward to a same-but-different me that I can be happy with.

    Polly
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    I'm about at the same point as you, Polly. I'm looking around my house at the various disasters that have accumulated since my illness really kicked in three years ago (well, five years I guess) and realising I will likely have to hire someone to help reorganise/clean my house for me now. My house is a source of pride for me, although not much since I became sick.

    At six months into mtx, and now with a top-up of pred, I just don't see myself ever being able to do this on my own, which has long been my hope. Now I feel I need to spend my energy/function doing nicer things than housework so have started a fund so I can have someone in to help clear out all this junk and disorder and give it a good clean. I never thought I would need that. I've put it off far too long hoping I'd be able to tackle it. My husband just rants and raves about it, but I don't want him to help with it. He doesn't have time and if he did, it would just make me feel worse. I think he's feeling let down by my meds too. Although, being a typical male, he's leaving me to guess his true feelings (sorry guys, but it's true). It's a huge disappointment. I know it's part of my job figuring it out as a patient, but the hope of better function has always kept me going and now I just feel really let down.

    It's such a small thing, but the realisation has been a real blow (well, kick in the belly). Acceptance seems like such a dynamic, multi-faceted thing with many levels. It seems unlikely to happen completely any time soon either.

    Sorry, not so cheerful about acceptance right at the moment.
    Take care,
    xxAnna
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Hi Anna,
    Totally understand how you feel. I have my son home just now and am going to spend the next two weeks clearing the loft and reorganising the house to make it more user-friendly for me, before I go back to work.

    I've been divorced for 11 years now, but did have a promising relationship flounder and end when I realised he blamed me for "letting the side down" and not "getting a grip". I just couldn't do the sort of things we used to enjoy and he saw it as a sign that I was aging - something that frightens him. I know in my heart that it says more about him than me, but it still hurts.

    Message me any time of you feel the need for some moral support Anna,
    Polly xxx
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Hi Polly;

    Yes relationships do add an extra element of difficulty; it's like my husband is going through his own version of my illness. He says 'our' illness. So I guess that at least means he's trying. He does come out with some weird statements though, that leave me feeling his resentment.

    I always think one of these days he's going to reach a point where he can't cope either. He has a choice not me. I have to keep on. It seems very difficult for some to get it that we can't just muscle through things, or, toughen up mentally and make ourselves better. Wouldn't it be nice if it were that easy. Your guy really criticised you unfairly.

    I'm glad you have someone helping you sort your house out with you. I'm looking forward to this myself. I think once it's done the relief will be great and overtake any feelings that I couldn't just muscle through and get it done. I've tried just going at cleaning for an hour a day, but I'm so exhausted/painful then I can't manage anything else. I really didn't get very far with it. Then the priority things like the kitchen and meals don't get done. So I'm admitting defeat and just not even going to bother. I'm putting all my energy into physio therapy at the moment so there's really nothing left over. I suppose it's all part of accepting what these diseases bring to us.

    As you say, some days are really hard. Thanks for the invite to message you. I may take you up on it sometime. Same back to you, anytime.

    Best wishes, Anna
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Hi Anna,
    It sounds like you have a good guy there - I'm struggling with the day to day tasks also, and hoping that if I can rearrange my home to make it more user friendly then that may help.

    I have a little understanding of being the able person as my son, now 21, has an immune disorder which is now fully controlled but has been very challenging for many years prior to the past 5, and it really does change your life totally. I would like to think I would be an empathetic partner, but we never know do we? As you say we don't have a choice at the direction our lives have taken but our loved ones do. It's a difficult one.

    I hope you find benefit from your time spent with the physio,

    Polly
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    Wow, Polly you and your son have been through a lot. At least you have him as an ally and understanding friend, I hope.
  • polly123
    polly123 Member Posts: 96
    edited 30. Nov -1, 00:00
    Yes, he certainly stops me feeling sorry for myself - at 52 i've had many good years, whereas he has never known what it is to be pain free. I admire him greatly as I have more insight now into how much he has been through, and I can honestly say he's never not been able to raise a smile - in fact he is known for this - he truely is an inspiration and it breaks my heart sometimes to think of his possible/probable future - although you never know what advances will be made - we never expected him to live, and then the prognosis crept forward from 3, 7, 10, teens, early adulthood and he's still with us :D
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
    That is an amazing story! I can't imagine having a child and not knowing whether he would live or not :cry: He sounds like an inspiration and I'm definitely going to be thinking of you both the next time I'm feeling sorry for myself and not 'accepting' things.

    xAnna

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