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Interesting perspective on chronic conditions. - NRAS
Interesting perspective on chronic conditions.
Written by
Bookworm55
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25 Replies
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Thankyou so much for posting this article.
I have commented on the forum several times before that, for me, being a 'warrior' trying to battle my way through debilitating illness day after day, again for me 'pretending' that I am not living in a disabled body just doesn't work.
It is exhausting and so depressing, so bad for my mental health to be faced with disappointment after disappointment on a regular basis. Trying complementary therapies....been there done it....they do not work for me.
Acceptance is the way forward. Setting my own boundaries, saying no, living each day to the best of my ability....without pressure to do more.... soaking up and enjoying the simple things in life, and just being. I feel so much better and able because I am in accepting rather than fighting mode and have much more energy to do the things I can do.
Seeking out good care....yes.....looking for a cure in this time in history and place I live in....no.
I'm just back from an amazing two days with my daughter, SIL and two wee grandsons. I was honest...I can't stay with you, it is too noisy, I don't get enough sleep and I feel obligated to help out beyond my ability to do so. I'm unwell when I get home.
So, I hired a Shepherd's Hut, less than a mile from my daughters house, on the edge of the village in the garden of a big house, private outdoor area next to a stream.... privacy but security.
The hut came with a Swedish Hot tub which the owners lit for me, my younger daughter and I spent an enjoyable evening sitting in it, chatting, she with the obligatory glass of wine (supplied by the owners, me with my water). My older daughter visited the next day with the wee boys who had a ball, good sunny weather...free range chickens to feed, a shetland pony to admire, cats and dogs belonging to the owners hanging around. A real wee paradise, with rocks to paint for the boys, and a huge private outdoor area just for us.
We had an amazing 3 hours of joy and memory making before they went home, she returned later by her self and another evening was spent in the hot tub. Bliss.
The wee boys want to come back to GranMarie's holiday home and wanted to take Charlie, the resident cat, home with them. Success all round.
I'm home tired, yes....unwell, no.
RA warrior....most certainly not. Just accepting some things just won't happen for me, but good things will, often better.
The Shepherd's Hut outside seating area.
You may not call yourself a warrior but you have an heroic approach to getting the best out of your life which is brave in itself 💪 The time with your family sounds amazing and I'm sure that they enjoyed it as much as you did. Being honest with ourselves and others can be challenging but you've got it nailed! 👏
Everyone was so much happier. I took a Shepherd's pie that I cooked in my own house the day before, the boys loved it. Shepherd's pie in the Shepherd's hut. But all about acceptance.
I can't walk, swim, ski with them...but they loved the Shepherd's hut 🐏🐑
I've booked again for the Autumn. I'll see the boys before then, my daughter will visit.
• in reply toMmrr
That sounds lovely. Glad you hd such a great time 🥰.
Oh this is so much how I feel now. I am not a warrior just resilient but also frustrated with care cure and boundaries needed to live in an “ok” way.
This sounds a bliss way of visiting your daughter I have to say giving you some space too
Xx
I just read that! I too found ‘acceptance’ quite liberating, and better for me than ‘fighting’..
Mmrr• in reply to
I have RA, I live in a disabled body.If my body wasn't disabled I would be walking, skiing, travelling.
Why pretend ?
I'm pleased you feel liberated too, I remember that you have reclaimed the term crip. Brilliant.
That is a good article. I have always accepted my lot. There is no point in doing otherwise. It doesn't mean that I don't accept help when I need it and I am most grateful for my medication and the wonderful RA team I have access too. I actually feel sorry for my joints when they hurt. It isn't their fault and being angry or feeling sorry for myself is not helpful at all. I find that a positive outlook on all things makes life that bit easier. I am not saying I manage that all the time and it doesn't mean I like what is happening but being able to accept is a necessity to be able to cope with whatever happens in my life. Good luck to you.
Thank you. A really interesting perspective.
Learning to live with a chronic disease is decidedly, very challenging, but it’s crucial to our mental health and finding peace and happiness. Perhaps even this, though, looks different for each of us.
Go gently
How wonderful for both you and your family. Happy times with your grandchildren and your children. Very clever of you and now you will really look forward to seeing them all and making the most of the time spent with them.
Learn to accept what you are able to do sounds reasonable to me 😎
20 years after diagnosis I'm still angry. Acceptance sounds great, but I'm not sure I'll ever get there. I always push myself to do more than maybe I should and suffer for it. Its my family way.
For me, being angry or frustrated, feels like wasted time and energy. I try, not always successfully, to just get on with living my life in the best way possible and my goal is to make the most of every day.
I’m still fortunate enough to be quite active, my disease is controlled, though other health issues are rearing their heads. I worked until I felt it was time to not work, now I enjoy retirement.
I’m not a warrior, I don’t fight RA, I live as full and happy a life as I can. In all honesty, letting go of the battle and allowing myself to say “OK, this is how things are, what can I do today”, is empowering.
Just a different perspective with the benefit of 24 years of living with RA.
Go gently
Yes I too try to keep active though I had a bit of a flare up in the last few months, maybe due to lack of rheumatologist contact since the beginning of the pandemic. I’m pretty sure my meds need updating - the increase in mtx advised by the rheum nurse on the phone just reminds me of why I reduced the dose 6 years ago!
Maybe retirement is the key. I absolutely hate having to work. I think working full time seriously affects my disease. I can't afford not to though. I'm counting down the mortgage been paid off so I can reduce my hours.
I’ve made a very, very good friend over recent months. Similar background, same age (38), same interests. Main difference being he is fit and well, and I’m not. In addition to the PsA, I have a bunch of other issues, so have had daily limitations of one kind or another for the last 14 years, and am generally very accepting of my reality as a result - I do get frustrated from time to time, but I know and respect my limits. Or, like the article, occasionally make a conscious choice not to. On one such occasion recently, I attended this friend’s birthday, knowing I was doing too much, and knowing I would suffer afterwards. Only my neuro symptoms have been getting worse of late, particularly the crippling headaches, and one caught me completely by surprise mid-gathering. Unable to take myself out of the situation before the worst hit, for the first time, someone other than my daughter saw me barely able to do anything but just about hold myself upright, close my eyes, and try not to throw up. As a result, this friend has become the one person I am truly honest with about how I’m doing day to day, and today hasn’t been great. I’m in hospital with the teen for a fortnight, my mattress is like concrete, which is exacerbating my PsA symptoms in my back, and my neuro stuff is having a field day.
In our usual morning check in today, I said as much to my bud, and was reminded of how dissimilar our lives are in physical regards, along with how little people not in our situations understand. He well-meaningly responded with ‘wow, your body just won’t give you a break at the moment’, as if there are ever periods of time when I function normally and without pain. It made me smile to myself, and then I went back explaining exactly that. Even if it’s not apparent, or I don’t mention being in pain, the reality is that I experience these issues constantly, I simply plan each day around my pain levels and ability. And, as with the article, sometimes I choose to do things knowing that there will be a consequence, but life is short, and sometimes, just sometimes, the pain is completely worth the moments of joy and human connection. Laughing now gives me horrendous pain, to the point I can barely hold my own head up, but I’m still going to see Dave Gorman live in September. He quite literally crippled me at his show in Cardiff 4 years ago, and my problems weren’t as pronounced then as they are now. I’m still going to spend time with my hysterically funny friends. Life is too short not to. But I also think very carefully about my transport plans and the likelihood of finding myself physically unable to drive. Make sure I pace myself in the run up to something I know is likely to be a challenge. Consider my diary in the days after, and have the essentials beside my bed so I can just fall into it on my return. Unless I actively choose not to.
Not entirely sure why I felt the need to write this reply, but I did feel a need. Being angry about my situation does nothing except cost energy I could better use doing things I need or want to do. I’ve found that acceptance is not something we do once, sometimes we have to accept the same things over and over and over, but it does give me a sense of peace and a better quality of life. And the ability to gently explain to well-meaning friends what my reality looks like whilst quietly hoping they never learn that for themselves.
• in reply to
Wow great post. Very honest! Thanks x
Mmrr• in reply to
I found your post heart warming Charlie. You seem to live your life in a similar fashion to myself. Somethings are just worth having payback for, others not....I decide on what I'm willing to put up with and what I'm not in terms of how the activity will affect me. But acceptance that I can't do many...most...of the things I want to do is key to a sustainable, manageable life. I reserve my energy for ...whatever....rather than using it in a mental and physical battle to 'push through' and do things that I know I can't do.
Pattie Smith was playing at Doune the Rabbit Hole music festival in Scotland recently, I decided not to go, despite knowing she is unlikely to be back in Scotland again and so want to hear her live. The travelling, sleeping in a tent with bilateral sciatica or undertake more travelling go find overnight accommodation, communal loos, trying to walk, stand and all the other issues was beyond me. Sad ...yes....accepting of my choice....yes....warrior...no, it would use too much energy.
Good article, thanks Bookworm55
Yes I see-saw my way through feeling angry at others thoughtless-ness sometimes feeling low/sorry for myself and then having good days.
I'm learning that I can be kinder to myself and am able to deal with people's perceptions much better now. I've realised they usually mean well even if it hits the wrong note and most people are too busy focusing on themselves to dwell for too long on others. I know my personality more as I'm 51. I worry less about what others think now.
For me: over-thinking my health - to the level I was doing - was extremely unhelpful. I was googling too much and developing health anxiety re: psoriatic arthritis, tendons, hearing, balance condition and anxiety. Now I'm very lucky to have retired early, the day to day pressure is off. It is a huge relief. I just go day to day and try to be honest with others in a brief way about how I feel or what I feel able to do...depending on which friend I may say more or less... fluctuating conditions are much misunderstood.
Thanks again. 💐 xx
Excellent article thanks for posting it. 
Being retired means I tend to fit in things I enjoy knowing will need to rest maybe two days after, along with needing analgesics.
My mantra is what's the worse can happen I'll sleep after the activity whatever it is 
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