How do you cope?

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I've had Psoariatic Arthritis for over 20 years. I've always had 'low' days but they are coming more often and last longer.

My poor husband gets the worst of it.

I'm beginning to feel sidelined by friends. I feel because i'm less able to join in with various things although I realise this maybe my paranoia .

I feel unable to admit how much I am deteriorating. I have a supportive family so am luckier than many I know. I also realise that in many ways I am luckier than some. But the 'blues' do affect me more and more.

😪

Comments

  • YvonneH
    YvonneH Member Posts: 1,076
    edited 27. Feb 2020, 10:54
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    Hi lynmary,

    I think the grieving comes back time and time again, for the life it could have been and for the life you wanted as you got older. I don’t think you can stop that, so acknowledge it’s there, get cross with a pillow, have a little cry, maybe write it all down, work through it here with those who 'get it', we can help you through it, as you know since you wrote your post

    Then look again at your life, and find a couple or 3 things in your life that you are proud of and a couple or 3 things you look forward to in the future.

    Are you going through other changes at the moment? Linked more to age than PsA? It’s easy to link everything to arthritis, maybe there’s another factor to consider though.

    Also your friends are 20 years on, or only knew you after PsA arrived, so it’s unlikely they are suddenly moving apart, are they going through a similar patch of difficulty?

    Remember you can use your GP too, they can help re ruling out anything dire, always a good thing to do, they can help with perspective, seeing if the stage of your life could be an issue. They can maybe offer talking help or medication too.

    You are doing great, you’ve become depressed, recognised it and you are taking steps to deal with it, what more can anyone ask? Go lynmarie!

    Yvonne x

  • Tracie
    Tracie Member Posts: 57
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    Hi lynmaria
    So sorry your going through a rough time. Def think some days are better then others. I feel for my husband and family n friends too but think of it other way round you would hate to see your husband in pain or friend and would be there for them. Def bubble bath and a cry helps and I have just started some counselling which I think is helping just to talk to somone outside from your family n friends loop she said I'm grieving for the person I was.Let's all hope for some warmer weather. We are all doing so well just got to cope day by day.
    Tracie x
  • lynmary
    lynmary Member Posts: 17
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    Thanks ladies. Points to think on x

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
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    Thanks to poor health I've been sidelined since the age of eight: I was born with eczema and developed asthma aged seven, way back in the dark ages before steroid creams and inhalers. The isolation and bullying, although unpleasant, at least prepared me for a compromised adult life. I can still recall the unholy glee of my classmates when we learned about leprosy and how my heart sank, I instinctively knew what playtime would bring and they didn't let me down. 😁

    Arthritis has changed how I live my life but I will never a!low it to change what I get from it. OK, so I can't do what my friends do but there are other ways I join in: when they're doing cross-country walks I join them for lunch at the pub, if we have a day out and they can get into historic buildings I can't, I esconce myself somewhere comfy, read my Kindle, chat to people, then look at the pics my friends have taken to show me what I missed. If they come round for dinner they care not I am in my jarmies and go to bed before dessert, likewise if I go to theirs. The only thing they all struggle with is my not seeing people who have a cold or are getting over one, they cannot get to grips with immuno-suppression and what it actually means.

    I am concious of the impact the disease is having on my husband (I have PsA, OA and fibro) but he has witnessed the decline since the very beginning and knows that none of this is my fault, that if I could be different I would, and he knows that the character of the woman he married remains intact. I am more than my disease, I always have been. Yes, I get down from time to time but that is necessary. I get annoyed when people use terms such as 'battle' and 'fight' because I am doing neither, this is the hand I was dealt and the hand I have to use but sometimes the effort to be cheerful is too much and why shouldn't I grump? What I do not want to do is grump all the time and bore on about how awful it all is. Could things be better? Of course they could. Are they ever going to be? No. My physical path is set on a downhill direction (isn't everyone's? It's caled ageing) but I don't have to be.

    The PsA was not a surprise thanks to my genetic inheritance (it began when I was 37 but wasn't accurately diagnosed until I was 46) but the OA was a horrible shock, I wasn't aware the double could be done. I plunged into depression and to this day take a small dose of Citalopram, an anti-depressant, to help me cope. My rheumatologist reasoned that if I was stronger mentally I would cope better physically and I agree. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
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    I just did a long reply and it disappeared.

    I began PsA aged 37, was diagnosed with OA at 52 and also have fibro. My history of being sidelined, however, goes back to the age of eight and, in hindsight, was very useful preparation for my diseased adult life. My husband has witnesed my decline but the woman he married remains, my essential character and nature has not been affected by the disease, why would it? I am more than my disease, I always have been and always will.

    I find ways to join in with friends, if they are doing a cross-country walk I join them for lunch. If we have a day out and they can get into an historic building I can't, I esconce myself somewhere comfy, read my Kindle, chat to people then on their return they show me the pictures they took. If they come to dinner they are used to me being in my jarmies and often in bed before dessert, likewise if we go to theirs. It's the arthritis ABC in action, adapt, believe, compromise. The one thing they struggle with is the immuno-suppression thing, as far as I am concerned if you are still coughing and sneezing but 'feeling better' you can still be infecfious. And often are. 🙄

    After my OA was diagnosed I plunged into depression and to this day still take a small dose of an anti-depressant. I have never seen the point in being grumpy with those around me, my compromised life is not their fault, they are not responsible. Mind you, my mother drummed it into me that poor health was not an excuse for bad manners and I think she was right. Yes, I get down every now and again but that is necessary to help me keep my spirits up. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BettyMac
    BettyMac Member Posts: 207
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    Hi Lynmary

    I’m sorry to hear you’re feeling low more often. Having to cope with with health issues and this long dreary winter is taking its toll on many of us.

    I’ve decided to copy a friend who’s been dealing with depression for years. She now keeps a diary where she writes down what’s brought her pleasure each day. It might be a wee thing - like stepping out of the door and hearing a blackbird sing or noticing some snowdrops.

    There’s some decent research that shows we can reframe our thinking by dwelling on positive aspects, however small.

    Those of us who struggle with mobility can find it difficult to take any exercise - and when the blues strike, all I want to do is hide in a wee dark corner - but getting myself outside helps. I tell myself that I don’t need to do a marathon, just a few steps.

    Small goals are achievable - and can be built upon.

    Spring can’t come soon enough for me!

  • Aj_x
    Aj_x Member Posts: 206
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    Have flagged up and done a report about the comments that have been duplicated and the fact I am unable to delete one each of them.

    Aj_x

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    Options

    Thanks to poor health I've been sidelined since the age of eight: I was born with eczema and developed asthma aged seven, way back in the dark ages before steroid creams and inhalers. The isolation and bullying, although unpleasant, at least prepared me for a compromised adult life. I can still recall the unholy glee of my classmates when we learned about leprosy and how my heart sank, I instinctively knew what playtime would bring and they didn't let me down. 😁

    Arthritis has changed how I live my life but I will never a!low it to change what I get from it. OK, so I can't do what my friends do but there are other ways I join in: when they're doing cross-country walks I join them for lunch at the pub, if we have a day out and they can get into historic buildings I can't, I esconce myself somewhere comfy, read my Kindle, chat to people, then look at the pics my friends have taken to show me what I missed. If they come round for dinner they care not I am in my jarmies and go to bed before dessert, likewise if I go to theirs. The only thing they all struggle with is my not seeing people who have a cold or are getting over one, they cannot get to grips with immuno-suppression and what it actually means.

    I am concious of the impact the disease is having on my husband (I have PsA, OA and fibro) but he has witnessed the decline since the very beginning and knows that none of this is my fault, that if I could be different I would, and he knows that the character of the woman he married remains intact. I am more than my disease, I always have been. Yes, I get down from time to time but that is necessary. I get annoyed when people use terms such as 'battle' and 'fight' because I am doing neither, this is the hand I was dealt and the hand I have to use but sometimes the effort to be cheerful is too much and why shouldn't I grump? What I do not want to do is grump all the time and bore on about how awful it all is. Could things be better? Of course they could. Are they ever going to be? No. My physical path is set on a downhill direction (isn't everyone's? It's caled ageing) but I don't have to be.

    The PsA was not a surprise thanks to my genetic inheritance (it began when I was 37 but wasn't accurately diagnosed until I was 46) but the OA was a horrible shock, I wasn't aware the double could be done. I plunged into depression and to this day take a small dose of Citalopram, an anti-depressant, to help me cope. My rheumatologist reasoned that if I was stronger mentally I would cope better physically and I agree. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Tracie
    Tracie Member Posts: 57
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    Hi lynmaria
    So sorry your going through a rough time. Def think some days are better then others. I feel for my husband and family n friends too but think of it other way round you would hate to see your husband in pain or friend and would be there for them. Def bubble bath and a cry helps and I have just started some counselling which I think is helping just to talk to somone outside from your family n friends loop she said I'm grieving for the person I was.Let's all hope for some warmer weather. We are all doing so well just got to cope day by day.
    Tracie x