Thought my pmr journey had ended after 5 yrs but no.
A former friend told me she was sick of hearing my troubles………I said thank goodness I now know how you feel - won’t be bothering you again……but month later took 1/2 hour getting out of bath with husbands help…….
How can we educate these ignorant people( she was a pharmacist)?.
The kindness of strangers is unbelievable but from those I’ve known a long time not there.
Yesterday I walked a mile and then began my return journey- a mobility scooter approached- ‘I can see you are having walking problems let me take your shopping . I’m going your way. What a special person.
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Linlang
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Sorry to here about your “friend” Lingang! If people haven’t suffered much in their lives they cannot know what people are going through - and, to be honest, other peoples reactioncan be understood a little. I know I sound similar to your friend but I remember, years ago, two friends who were the same and I DID get fed up with them. They never seemed to notice how “one sided” their own conversation was at times. I try, except on this forum, to keep my troubles (re illnesses) to myself.
I DO sympathise, really! I have PMR, Rheumatoid arthritis and Gout so pain is with me daily. But sometimes I look at my never complaining husband and ask myself “how does he bare it” - after all, his life has changed so very much too because of me.
Thank Constance appreciate yr reply. The lady in question lost her husband last yr so has struggled. I have few friends now lots of acquaintances and have reached a point where I now act accordingly. My husband is around but works full time at 79 so am on my own a lot. Just want people to realise the restraints of long term illness.I do count my blessings. Keep safe
Sooo many people work way into their seventies. My husband couldn’t wait to retire at 65. He would have stopped at 63 but we worked out we would have £400 less per month in pension if he did. He’s as happy as a sandboy (whatever that is)🤪
My son told me the origin of Happy as a Sandboy only the other day.
Publicans used to spread sand on bar floors to catch slops, spills, spit and so on. The sand was delivered by sandboys. Hauling sand often from caves was thirsty work and they were paid in beer at each pub.
Thank you, Bridge. I use many expressions that I have never understood where they came from - and am too lazy to look up!!😂Husband totally different! He looks up everything (and it gets on my nerves listening to all the results)!🤨
Sadly, even people who have suffered at some point in their lives can be un-empathetic. 'Look at me! i made it through the bad times, toughen up!' But they miss that we're not the same, and that our illnesses are very different too.
Agree Dorset Lady. Was upset that pmr had returned and am sure the upset pushed me down. I have a daughter here with 3 children who hasn’t seen me for 15 years and my other daughter is in Aussie so much sadness but also much to celebrate. Just want the public to realise that we often need a bit of kindness.
Not much of a friend!!!! Well rid I'd say - and how VERY professional, NOT. Hope SHE discovers what it is like at some point. If she carries on like that then she will become very lonely.
But how rude to say something like that to anyone, above all a friend and it does make you wonder about how she reacts to clients seeking her advice. Even having lost her husband is no reason - losing your day to day life to chronic illness is as much a bereavement and it wouldn't occur to me to say something like that to someone else struggling whatever the reason.
Oh dear! I supported a friend for decades through all sorts of troubles but the moment I hit a low she started to withdraw and then I asked her why. Apparently she had troubles enough of her own. My job was to service Her needs. I’m ok now but that was a shock. A mutual friend told me She is now so miserable and spiteful that she has no support at all. So. Being kind is lovely but for some, you are merchandise. Choosing a best friend is probably more important than anything in this world.
These stories have touched a chord with me - someone, who I thought was a good friend, wrote to me recently saying she needed to withdraw from our “friendship” as she couldn’t continue giving “unrelenting” support over the last three months following my hospitalisation from a suspected heart attack. The hurt was terrible, and more so as I supported her constantly following her successful surgery for a brain tumour. I guess people find it hard to support people with an “invisible” illness. So sad.
Definitely not - I’d just assumed she was doing what friends do, as I hope I did for her. A hard lesson to learn and one which can still reduce me to tears sometimes 😢
Oh yes - I was going to say mine wasn't quite as nasty but maybe it was. I had helped a friend after the birth of her 3rd child when she had a frozen shoulder and couldn't lift the baby. I sent my girls to school/kindergarten and drove about 5 miles to hers, often for the entire day. nipping home to get my children, so clocking up 20 miles a day. I rearranged my day so I was doing my self-employed translation in the evenings. It was what a friend did wasn't it? Her husband promised me I'd be paid for the hours I put in. Until he decided he couldn't afford that out of his own pocket and the health insurance wouldn't pay. He was on probably 3 times the salary my husband was. I didn't even get offered petrol money. Hey ho. Then a couple of years later she rang and demanded I look after the littlest so she could go to work, but at hers - I couldn't, I was translating and had a deadline to meet but said I would have him at mine if she brought him over. She also still had my cot and I had to ask for it back for visitors who were coming to me. She'd lent it to someone else - without asking me, Apparently she then went around all our friends telling them how awful I was, had refused to babysit for her when she looked after mine all the time and how I had embarrassed her over the cot.
As you can tell - it still hurts. It wasn't the money - it was the betrayal.
Good to know others have been hurt- you can end up thinking it’s you. So sorry you had this experience. If you are in Bucks/ Herts … I can be a granny figure mine are off in the world
Totally understand - and at first it made me feel I’d done something wrong 😑 Thankfully my other friends have been very protective - yes, I definitely came to realise my true friends.
Just hold on to the “ special people.” Unfortunately compassion and care can be a rarity. Your previous “ friend” is now the worse off for losing a friendship. You have, on the other hand, become like the person who gave you help with your shopping, someone who can appreciate and have empathy with folk who may be struggling with one thing or another. 💐
As a driven type I've lived most of my 70 years to my schedule and not fully understood the impact it has had on others. My wife of over 40 years has suffered as well as gained but the pred also induces an anger that comes to the surface. I am now as a consequence of this disease much more aware of my passage through life and there's much I need to try and improve, but it's not all bad. I've never been that good at being "friends" because I don't really understand people or their reactions. Probably somewhere on the apsergers scale for that. As a defence my sister told me I had the ability to totally cut people off if they hurt me or tried to distract me from my decided course. I don't do that now but recognise that she was right. We live and learn despite our age and if this disease has any benefits, one is tolerance and the other is time to understand and have empathy. Not a bad silver lining to a sod of a disease.
Not sure they’ll ever wake up! I’m on 4mg for life. That’s two things that won’t wake up - me and the adrenals!🤪
I so hear you. My daughter and I were discussing this recently. She has been dealing with recovery from a septic knee ( month in hospital, 5 surgeries so far), lucky to have her leg. Some people give you a short window of sympathy , help and understanding and then expect you to be well. That’s it, zip, done. I think they have limited life experience. Others get it and are wonderful. I’ve had lovely gestures of kindness from strangers , like you did. Heart warming for sure. My best to you, Ann
Linlang, I was raised in The American South by a mother who said, "Dear, when people ask how you are, they don't really want to know." I understand that. I have been in considerable body pain since 1984, but talking about it to anyone is boring to them - and me. If a friend truly needs to talk about physical or emotional pain, I am always there to listen, and my good friends are there to listen to me. But it's a limited conversation. I would never dump on people daily. When my husband and I get together with our friends (70s and 80s) who all have physical ailments, we say, "Okay, let's go around and spend 10 minutes on the organ recital (kidney, liver, heart, etc.)" so we can get on to more enlightening conversation. I have distanced myself from people who do nothing but complain. Life is too short. Sorry, I don't mean to be unsympathetic to you, but I'm presenting a different perspective. Best wishes to you!
I have got my response mainly down to " not too good but managing". Seems to cover most. If they genuinely want to know this response gives them an opening to explain.
Hi Linlang, Since being diagnosed with PMR 20 months ago I’ve found out who my ‘true’ friends are. I know which ones are genuinely interested in how I’m doing and actually listen to what I’m saying. Some ask the questions but don’t listen to my reply. I watch their eyes glaze over and their brains switch off. To these people when they ask how I’m doing I usually say ‘it’s a slow process but I’m getting there’ and change the subject. This forum is where your ‘true’ friends are as we can all relate to what you are going through. I wish you well🤗
Yes, I sympathize. I have three girlfriends, all of whom chatter away so non-stop I can't get a word in edgewise...always about their issues, their problems, their work, etc. Yet at least we can go have wine together, or a bonfire, or kayak so I accept their single-minded streams. (Thankfully, my brothers and I are very close so I visit with them often). I lost the one friend who did listen when she told me she would no longer be my friend because she felt my husband was abusive. Huh? That one really hurt me because at the time, I really needed her support. I LOVE the "organ recital" story, Gigi. So funny!
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