Hi, I just had a thought about the psychological effects of experiencing a chronic illness.
When I experienced 3 months of undiagnosed PMR 2 years ago the effects were very debilitating and I remember thinking this must be it- its game over. Then came the thought if ever I get well enough just to go out for a coffee it would be amazing and I promise the goddess -if there is one upstairs that I will make the most of life.!
Since taking Pred and 20 months of very slow improvement I have been fortunate- so far not taking anything for granted to be off the steroids for the last 5 months. However I think my temperament, being quite sensitive , prone to awfulizing and being quite cautious can make it hard to step out into life again. ( Even though I worked for many years in therapy/ counselling - Its easier to see what every body else is doing/ could be doing etc!)
I think I am taking steps in the right direction but I was just thinking about how an illness made me more aware of human vulnerability , of the stereotypes around about how it might be to be at various ages , added to which the stereotypes around in the 70s depicting women as fragile little creatures needing to be taken care of. Then I see images around of many independent creative people and I think life is not a rehearsal !
I would be interested hear what others think.
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Animalover65
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I think that being on this forum has completely changed the way I view the senior years. So many remarkable achieving people and we are the chronically ill ones! I wish our culture appreciated the wisdom of older people more, other cultures capture this much needed resource. It can be such a cruel, lonely world. Bring on the grandparent energy! 🙏🌸
Definitely Sheffield Jane, this forum has added to my positive role models. I was impressed by a recent discussion about camper vans.
I am going to a party- 40th anniversary of ballet class performing arts academy on Saturday , first party for a long time! The dress code was glam/ sparkly. Got vivid pink trouser suit and sparkly accessories - hopefully looks better than it sounds! 😂
I echo your sentiments - our wisdom and fortitude are boundless and I would love to be recognised for this more widely!! Instead of the remarks and comments "Now whats up with you " "Havent you got over that yet, I thought you were on steroids for it!!!" "Dont tell me youve got something else now, you are always on about your aches and pains "
Would that I am always on about my aches and pains, this just isnt the case, its their fear that Im growing older not mine!!!
PMR per se didn't make me feel any of that - I was just cheesed about the fact the place we'd chosen to retire to was to be able to ski as much as I liked and walk in the mountains. Skiing I continued with and gave up when I did for other reasons. Mountains were out.
I think it is perhaps different for anyone who developed PMR after Covid - that has changed a lot. Being widowed added to the awareness I already had after a lifetime in and associated with hospitals and the NHS. I absolutely DON'T even think about using stepladders, and even a 2-step kitchen one is only with great care. There are places I wouldn't move to happily - not for me the rural idyll far from a hospital so even on blue lights it takes 45 mins to get there, never mind how long it took to reach me in the first place. And no, there aren't helicopters available every time you would like one.
That said, having sold our campervan during the first run of Covid as it was obvious my husband would never camp again, I have bought a VW campervan and this week have set off on my first solo mission to see what I really require. I'd have been away sooner before most of southern Germany and Austria headed here on Thursday but on Wednesday it was typical of the last month or so with rain and a not-so-balmy 10C. Skiing and camping both need reasonable weather in my book!
I don't have the luxury I was used to with a caravan or large campervan - but even at over 70 and with PMR it is perfectly possible if you set your expectations a bit lower. It is like a mobile living room - I am not restricted to home, within Italy I have unlimited free wifi so all campsites are possible and still keep my eye on you all, most campsites have wifi these days. I shall be able to go out for the day and see somewhere different without just sitting and doing nothing which never sits well with me - but don't ask me to do housework!
And this was my view at dinner on Thursday - the boat was a 10 man kayak sort of thing
So inspiring. I’m in awe of your camper van travels as I’m totally impractical and fearful of travelling long distances alone since having this condition.
I totally agree about being near a large hospital. That was the first thing we both said after diagnosis …thank god we don’t live in X (won’t mention the town way out in the sticks!).
I didn't really change any of my travelling habits but I did change how I did things a bit. No stupid o'clock starts to get to an airport, even relatively nearby ones, travel the day before and a night in a hotel. Always airport assistance - whatever the airport unless it was a tiny local one but these days I even request it then. I've been camping since I was about 10 and it had been hard seeing the camper go 4 years ago and during the final months of my husband's illness I dreamt of my own VW bus. The money was in the bank - losing value day by day and if I were to need a carehome they'd take the lot so I thought I might as well enjoy it first!
I own the flat my paramedic daughter lives in, on the surface it is the ideal retirement place, ground floor, parking at the door, lovely gardens with a gardener. But she said Whitby is too far to a hospital even out of tourist season - you aren't using it!! Here I have everything in walking distance, hospital 10 mins, ambulance at the door in the same, but my family is in the north of England and Scotland. I will have to come back and plans are in place for a granny flat with the daughter in Scotland. But first, I will go and do the things OH never wanted to.
How wonderful. Do the things your OH never wanted to do. We’ve avoided stupid o’clock flight times for a while and your recommendation to use airport assistance has been invaluable. Hope you have a long time doing all the things you want to do before you come back to the U.K.
That's great PMRpro! I would like a photo of you and your camper van to remind me to feel the fear and do it any way!😊Will you have your camper van in Scotland?
Maybe - I have people here queuing up to buy it if I don't! Not sure how saleable it would be in the UK as it is LHD but I drove a RHD here until I bought this last year!!! A selfie might be a bit difficult to get me and the van in though - will see what I can produce!
PMRpro What a lovely post .. And long may you carry on with your plans although not the same as before .. My problem is the steroids weakened me a lot and I do believe my doctor rather left me to keep chasing ,, even though as I kept learning about PMR I still didn't get the attention and it took 2years before I saw a Rheumatologist and he immediately sent me for a CT scan, and discovered I had a fractures in my spine , my muscles are useless and I have difficulty just standing , I am trying to get them back with Physio but at 87 it is going to be a long effort .. But as I wrote to "Longtimer" my Garden is my saviour .. when I can get in it, after the long winter we had , as I still work ,, I am giving my Boys more tasks especially now my eye sight Glaucoma is getting worse in my left eye .. But they are busy with their own demanding jobs ...
What an interesting post. You sound like me. On hearing the doctor in Eye Casualty on the phone to the stroke unit when I was diagnosed with GCA saying, ‘I have a 67 year old woman’ …initially I wondered who the hell is he talking about. On being given the steroids and told I may have GCA I responded, ‘but we’re a very fit couple’. The doctor wouldn’t let my husband pick up the prescription. He sent a nurse and said, ‘I want to see you walk out of here with the medication’. We realised the seriousness at this point. As the saying goes, if you want to make God laugh, tell him your plans.
Like many, I’ve had to come to terms with my condition and celebrate each milestone- first gig attended, first music festival, first trips abroad and early next year to celebrate our 70ths (and husband’s 77th) first long haul trip since 2020 with close friends. Eight of us of various ranges of fitness will cruise the Caribbean and have a week on Barbados. A blow out budget but will celebrate in style. Life is not a rehearsal as you say.
Thank you Bluey-1, its so good to compare notes and gain inspiration from others on this forum. Wishing you a great time in the Caribbean and on Barbados.🌺
Hello. I love your forum. My main illness is lupus and other autoimmune disorders that affect me very similarly in body and thoughts. My life is more controlled; not spontaneous as it once was. I love your camper van PMR; we just got one and I’m excited. But doing it solo I could not do. I do rent a beach house 5 hours from home every year with me and my dog Teddy. Usually for 3 weeks. If family want to drop in then they know it’s help yourself! I love the freedom of being by myself and always have. It’s likely I’ve had lupus at least since my 30’s and am now 67. Only diagnosed in 2016. Steroids are a part of my protocol which is one reason I love reading this forum. We may be limited but we are alive and capable of things we may never have thought of!! X MM
tTt sounds lovely especially with Teddy and the possibility of the family calling in.🌺
I have many happy memories of staying in chalets on a beach in North Devon with extended family. Having a coffee and watching the sunrise right on the beach was magical. I am feeling inspired to return when I can and renew my passport in case I choose to travel further afield.
I encourage you to renew your passport. Leave your heart open to options. Calculate worse case scenario and go from there. Having a coffee on the beach is a simple pleasure to revive perhaps with a friend. x
Loved your post. At 75 I am a writer with ten books under my belt and a three book contract still to complete. No problem. Not until PMR! I haven't worked since last July but plan to pick up where I left off this July. I will have to take it slowly but publishers have deadlines they like us menials to stick to. I have had many thoughts like yours and feel I have learned to slow down and accept that life is different now. The book contract is good in a way but quite scary in another way. I will really have to put my 'living in the moment' hat on and avoid catastrophising. I'm normally very driven so this will be a new way of working if I can do it. Wish me luck. Writing is my happy place.
Thank you Dinahmite. I do journaling each day if I can, it helps me get my thoughts in order and process feelings. Can you give me some titles of your books please. And good luck with going forwards and finding the pace that works for you.
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I've kept a diary since I was 9 and am now 82. It is so therapeutic to read back how you felt about certain things in the past , that are of little importance nowadays - puts everything in perspective. I would not be without it and you are never too old to start.
As you can see from my 'name' I am a book lover. I would love to be able to read one of your books. There is more than one way we can support each other on this forum ! Please message me some info that will get me started. Thank you and good luck !
Hi, I’m just going to spew a few thoughts down. I think that chronic, severe ill health can change you. A few years ago, just before PMR hit, I was homeless with my young son. We were destitute and had no help. I developed restless legs and a slipped disc because of sleeping on an air bed that didn’t stay inflated. The pain was a 9/10 for months. I had so much going on that it didn’t occur to me to go to A&E. I was in so much pain I felt suicidal. When the PMR hit I became almost bedridden for at least a year because the diagnosis took so long. More trauma. I can’t take the steroids. More trauma. I’ve lost so much due to ill health and trauma. My family and I have been through one of the worst things imaginable and are about to go through it all again. I guess if If one has a good support system around them, maybe they do better. I don’t have parents, my Mum died when I was 5, more trauma. Sometimes I think I’m really quite strong. I don’t know many people who could’ve survived what I have. I don’t see anyone apart from my son and my carers. I rarely leave home. I guess what I’m trying to say is that I believe trauma brought on my restless legs, Ankylosing Spondylitis and PMR. X
Hi, I agree trauma definitely affects the body and managing with less support around takes great strength. I have had therapy over the years, some more helpful than others. Have you tried that route.? I know the NHS offer counselling and some available on line. x
Yes, I’ve tried but to no avail. My situation is extremely specific and difficult and I just keep feeling judged so it’s really hard but I keep going. X
Hello Bramble. Lovely name. I’d offer chicken soup and biscuits to you if I could. Medicine for the soul. I come from great trauma as well. I’m not sure I would have made it without my sister and my brother and counselors that cared. Don’t stop searching for the help you need. You are not “ less than” you are more a human being than you know. God Bless you. MM
PMR and the resulting physical limitations have certainly encouraged me to think about aging more. About my changing role in the lives of our 5 adult children as well as our 16 grandchildren. About skillful choices and how important they are. For the most part it’s interesting and usually creates acceptance and serenity but there are times when I feel sad at the loss of activities and types of relationships I’ve had in the past. I allow myself that sadness and then move on.
I agree I always feel better if I take time to connect with how I am feeling. Once I started to feel a bit better I found an adult ballet class and then joined yoga which slowly helped with flexibility and strength. In your write up you mention teaching yoga, are you still able to do yoga?
I teach 3 times a week and try to get in a short practice (10-15 min) another 3 days. I believe yoga helps maintain my flexibility, increase my mobility, and reduce my PMR pain.
The classes I teach include about 15 min of meditation.
Btw, pre-PMR I was teaching 1 classes a week in addition to my personal practice. One of my daughters recently pointed out that PMR may very well have been my body’s way of sending me a message about overuse of my body. 🤷🏻♀️
Lots to think about here, animal lover. For me (f, 78yrs, PMR, GCA) the psychological impact is the struggle to reduce expectations and accept the reality of what I can and can't do, and adapt to what feels like a new identity. I'm not now the woman who goes hillwalking, does vigorous gardening, gets a kick out of playing music and dancing, travels in UK to interesting places. I'm a bit daunted by the idea of pushing my boundaries, but trying to find interesting and fulfilling things. Also being aware of the value of slowing down, listening and reflecting (difficult, I'm quite impatient) and feeling gratitude for the things I was able to do when younger.
Try going undiagnosed for a decade. I had doctors tell me over and over I needed to see a mental health specialist. It was not until I had GCA for three years before a proper diagnosis, and that took 7 trips to Mayo Clinic. Now I just finished 4 months of chemotherapy for a blood/bone cancer I have had for a long time. If my kidneys had not gone crazy I might still be fighting alone. But, they found it. It is called "the practice" of medicine for a reason. they learn, we learn, and somehow we usually figure it out. I tend to be a chatterbox at times. One thing I learned from talking to others is that everyone has a story, and we all suffer, and grow through suffering. we all handle pain and grief in a different way. Don't let fear strangle you. Live your life. Sounds like you may be an older adult. As I have gone through chemo it made saddest to see someone young in a chemo chair. I am older, 68, and retired, no kids. I stand in awe of young people who deal with this and have to work jobs and raise kids. what courage it must take. So, while I said "why me" when first diagnosed, I soon changed that to "why not me", as I watched and listened to the challenges others face.
I'm down to ` mg now and am worried about what happens when I am off the steroids and also the Kevzara. I think we can't help it and just have to try to do the "one day at a time"and "live the present moment" idea, but easier said than done!
Hi AnimaloverI too was a Social Worker, psychiatric, Family Court and retired working with Immigrants.
I too was undiagnosed for 4 mos to the point I felt I was being gutted alive and couldn't scream for help.
Prednisone was at 1st was a welcome relief until I was hit with every side effect and I did everything for just over 8 yrs to negate them.
In the 1st month my niece who's a Dr said you'll be fine only 2 yrs and I already found this site and said no.
I think what I hated most is family just really not understanding how difficult it was for me in my day to day living. I truly tried to not let it effect me but let's be honest it's not your normal day. I needed breaks and more time to reve up.
I said all along the one thing it never took away from me was my love of diving. I relished going south in the winter and hitting the water. I felt so normal.
Covid came and i began my hibernation. To tell the truth I enjoyed Covid times. Hubby shopped once a week and 4 of our neighbors were our bubble. We all walked in the winter and in the summer at 230pm everyone was in our backyard pool. We celebrated everyone's birthday by the pool except myself, winter baby.
Covid is over and to be honest I continued to be extremely cautious so still stayed close to home. In the last month I've gone out more than ever and it feels great but again my adrenals are getting back to normal.
Coming off steroids for me was a bit brutal. I was in adrenal insufficiency for an extremely long time and dipped into crisis. When off I was still in adrenal insufficiency for a long time.
I literally started to feel more normal this March when south, 1yr 3 mos off prednisone.
I'm still in pain from chronic bursitis and hand surgery as well as Arthritis in my hand but slowly getting better
I think being in the profession we were in we see the world a little different and the people in it.
I personally have always been sensitive towards the underdog compared to most. A friend who's a psychiatrist said to me" you really feel people's pain and emotions " yup that's me". It can be exhausting. I sometimes wish I was more my husband who sees nothing. Everything flies over him when it come to nasty comments etc.
This forum I/know believe is a lifesaver for many around the world. It has brought friends together which is awesome.
I truly believe no one other than us know or understand even a miniscule amount of what we go through so I bless those who advocate for us👏.
We are blessed to have this forum. Happy Mother's Day to all.
Hi Wizards, what you said regarding feeling like you had been gutted alive and wanting to scream whilst suffering when you were undiagnosed really resonated with me, and you are right about only others who have experienced this weird condition really understand it.
Having been off pred for just over 5 months I think the adrenals are still adjusting. I felt particularly groggy for the last couple of days when it has been very humid in the UK. Seems to improve like magic as soon as it starts to rain. And it was reassuring to hear that you started to feel a bit better after just over a year off pred.
I also agree that being very sensitive can be a gift and a curse as you cannot switch it off. When animal charities advertise on TV I cannot watch some of the content. Try to help where I can though.
Hope you continue to improve and good luck with the rest of your journey.🌺
I was struck very suddenly like you at the age of 65 with PMR after having just entered my first year of retirement. For 35 years up to that point my career as a television studio director for a daily live TV show had me on my feet for 9 hrs. plus a day with few if any breaks and yet I felt like a million bucks.
I almost never worried myself about age, and was actually surprised when everyone else in my family insisted I had reached a very important milestone turning 65!! Fast forward to a little over 18 months later and though I am very proud of how I am managing my PMR both physically and more importantly mentally, my first thought each morning is what a different person I am now waking each morning with at least to some degree wondering how much I will hurt and what I will be able to accomplish compared to the day before. Am I angry? Sometimes! Am I sad? Quite often! Am I grateful? Yes! As I progress through each day some things go better than others but I also pay more attention to people around me living with hardships that make mine seem small and I am grateful that my body still works for the most part. Having found this support line and being able to commiserate and get valuable information from people just like me who are not just living with chronic illness but thriving and not allowing it to dampen their enthusiasm means we aren’t old and sick, we are just doing our best as everyone tries to do regardless of which chapter they are living at the moment!🙏
Hi fondofforest, PMR definitely wasn't something most had on our what's next list after retirement was it! And as you describe its very much about managing mentally as it physically. I try to keep reminding myself of this - just to be more mindful of taking care and pacing .
And it must give you satisfaction to look back on such an enjoyable career.
I think I rather took my body for granted until my PMR episode - trying to treat it more like a temple now.😊 Have added "enthusiasm and thriving* to my journal.🌺🌺
I certainly feel like we didn’t sign up for this and sometimes when I have had a few bad days I wonder why it has to be so complicated trying to get the dosage of Prednisone just right combined with my rheumatologist’s suggestions to add in other drugs usually used for arthritis. If you take more than one drug it can be very confusing weighing which one might be helping and or is one harming on so called “bad” days! Interesting that you are Animalover and I am Fondoforest, both good remedies for challenging days!
Yes complicated is definitely the word, we have the physical challenges to get over and also the psychological one don't we. I was feeling grateful for being off Pred and mostly pain free, and looking towards exploring learning something new and socializing a bit more and then at the weekend when the weather became quite humid I was suddenly struck by intense fatigue which seemed better on Monday and back on Weds. Fingers crossed it stays better today. Think it must be stuttering adrenals but I am not feeling very patient with them! Reminding myself its OK to feel thoroughly cheesed off sometimes!
The rheumatologist suggested an extra drug to help come off Prednisolone when I was struggling around 7mg and I decided to pass on that one and eventually felt better as I slowly reduced the pred.
If we could borrow a dog and go for a walk in the forest that would be ideal - but a long way to travel! 😊
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It’s our own fault we are ill!!!
Change in Typeface - harsh on older eyes!!
Trying to get a DEXA Scan
Now I know why I am feeling so Ill.
