PMRGCAuk
7,396 members12,147 posts

Where am I gone?

My husband just asked me "oh where is my soft wife gone"? He wasn't being nasty - but yes where am I gone??!! I know what he means - over the last two years battling this Pred/PMR "thing" - I have finally been beaten down and lost the usual softness I always had all my life. I had ME and Fibro for years and battled on - never telling anyone - but I don't know if its the pred or the PMR or maybe I'm just fed up with it all. I was probably the most sympathetic person on the planet - well one of many! - but I just can't summon it up anymore. Maybe its cos you can't see anything - so no-one ever asks how I am (yes on this occasion people in work knew I had PMR as I was so bad before diagnosis). And I've never been one to look for attention - so why do I feel so rotten. I can feel it in myself - not the same person at all!!!!

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Yes, I can relate to the losing of oneself. The ‘old’ me seems like a dream. However, I do think the old me was me trying my best to be the person I thought I should be - Super caring to all, doing everything. Short of wearing my pants on the outside, I was Superwoman. All this came at a cost in that my own needs were buried and in fact I think, to stretch the Superman metaphor further, my needs were Kryptonite to this perfect person.

Your post was interesting because the old you suffered in silence but giving counsel to all, to your detriment. This may just be me projecting but perhaps the cranky harpies that we become is not all due to Pred but a cry of, “ What about me? and nobody comes to help. This is because they’ve played the rules of our game which is to not worry about you and take all you can give, only for you to change the rules and they have not realised. Our disappointment comes to the surface and some of that disappointment is that nobody seems to care and that our Superwoman cape has gone too; we see ourselves as weak. Perhaps our task is to work out how we care for others but at the same time making demands for ourselves to be cared for too.

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Yes so true. I was never the "martyr" in caring for other people - it was my nature. A nature I now wish I had been born without to some degree - as all its done is left me the sick one - and I know that sounds horribly selfish but its the way I've been feeling for a while. Coming in to work this morning I thought of what I would like to say to my children "Yes be a loving caring person - but above all look after yourself". I know I'll pick up again - but today everything is just flooding around me. I got an invite in work for a lunch thing yesterday for next week (a long afternoon lunch) - and the panic - how on earth could I manage that - I'd be so exhausted - it just struck something in me - that this is now what I've become - afraid to go to things and have to appear "normal". It was like a spark that sent me into a downward spiral! Thank you so much for your reply.

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Oh yes, I was the same, have been caring since I was small. My whole identity has been The Nurse and now I’m not any more, so back to the drawing board. I think the caring bit is so second nature that I got lost on the way.

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That’s a very empathetic and articulate response Snazzy and really not much more I could add if I sat here all evening!

But if anyone else says ‘you don’t look ill’...... grrrr!

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I know exactly what you mean. I expect that it’s about survival. You are in there somewhere because you have just spoken. We have a lot to “recover” when we recover.

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Yes so true - I just needed to say it to people who know what I mean!! Thank y ou.

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Ohhhhh powerwalk, I so understand! I'm so sorry.... He's right, unfortunately, we do lose ourselves to these illnesses, it's inevitable. Our whole perspective of the world is seen though a PMR/GCA lens... and it distorts our image and our experiences.

Give it time. The old, sweet, caring, giving, loving powerwalk is in there... she is just re-energising!!!!

xxx

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Well she'd want to re-energise soon!!!! Ha - thank you - I admit to having a bit of a cry in the ladies - feel a bit better for it. God what am I like!! Thank you!!!

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You are EXACTLY like the rest of us... sick and tired of being sick and tired!

And damnit, you have every right to feel every emotion you are feeling right now!!!!!

Have a good cry! Get it out! And then, get back out there and kick some ass!

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I wish I could go to my own charger (like the automatic lawn mowers) and just recharge myself when my energy has run out.😏 What a different sort of life we would have. 😎🍸🍾🍹🍷💥

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Wouldn't that be nice....

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I do my crying in the shower mostly , soap in eyes don’t you know . More bothered that my 2 grown up children seem to be uncaring. Next fri have a lunch, sat theatre, six people so easy to not go , mon Liverpool Terracotta Army ,all with different folk ,already want to cancel sat . Been told I’ve become more aggressive, don’t think so ,just can’t be doing with wasting the energy. I quess we all want our mojo back .

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Your children are not uncaring, they simply do not understand, most people don't understand. They do not understand that PMR is so draining, because you probably look fairly well, they do not understand that the only thing keeping you going is Pred. And Pred does have an affect on our mental well-being, too. If you feel going out in a group is too much for you, don't go, you need to conserve your energy. We all learn that in time, with this condition. My 70 year-ish friends play golf, tennis, swim, run large homes and families and a couple have second home where they spend a lot of time time. But they don't have PMR or take Pred. Hang in there, but be princessey, look after yourself, and put yourself first.

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Thank you , going to cancel Sat . Bit hard to be a princess but will give it a good try .

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Well said!!

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Oh yes our "mojo" exactly. Energy has become so precious - what there is of it! Best of luck with the outings. Hope you enjoy some of it!

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Sat will be to much it’s with 5 (girls ) then meal then getting back from another town , so they will be ok without me I will take a rain check then hope for next time .

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I went out to dinner, Wednesday night, with 3 friends... However, I knew in the morning I did not feel up to it. I've had a cough and feel run down, so I sent a message saying I might not be going as I did not feel great.

I got a message back that said, "Throw some pills down your throat! You're going! A night out with the girls is exactly what you need!!!"

I went... I had a nice time, but by 9:30 - 10:00, I needed to be home. I was exhausted. I arrived home at 11:55. : (

*yawn*

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Hi

Not aggressive but no longer stand any nonsense

I have just given a cold caller a mouthful down the phone

After all I never asked them to call me

Thay get

thankyou for making me make the effort to get out of the chair

for disturbing my afternoon rest .For a senseless conversation about marketing that I have no intention of answering your questions.

Please do not contact me again and please take my phone number off you list ,But have a good day and I hopefully will never hear from you again.

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Yes, mine too!!!!! (Re: grown up children!) What's up with that????? Yes, I want my MOJO back and then I'm going to tell them all to go to.....

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This was because my answer phone kicked in supposedly to fast ( it takes me longer to reach it nowadays) I replied When I tell you what to do with your phone you can tell me . Aggressive, not seen anything yet . Lovely people here help so much .

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You remind me of OH with the 'cold calling'. If he's napping and I'm not around, bearing in mind he doesn't sleep good anytime, he growls at them reeling a list of what he doesn't need - asks 'how they got this number', we're supposed to be ex-directory, and ends very firmly with 'take me off your list and if I need anything I'll ring you, good day'! Just the same as you, he stands no nonsense.

When I get back in he tells me all about it - when I ask who it was he gives a very good mimic of the foreign language it was - he has a great sense of humour in it all. I always say 'never be rude it's someone's child doing a job'.....he just looks at me....

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Don't be frustrated with your children, it only causes you more stress and it drains your energy. You don't need that with PMR. They just don't understand what you're going through. You look fine, so you must be OK. Take care of yourself.

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Thank you , I feel better just admitting on here that I’m not best pleased with the kids , can’t say anything to local friends as I would feel disloyal , we always love our people but sometimes it’s ok to not like them for a while maybe .

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Whatever you don't do - do Monday! The Warriors are amazing!! And Liverpool has to be easier than going to China!!!!

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I could have written your post for myself.......my sister says I'm much more direct (how polite).....well maybe, but, it's not always what we say, it's how we say it,.......too old to pussy foot around, feeling so drained some days.....

Went Wednesday to a lovely peaceful water gardens......but......I have been paying the price since......totally drained. Husband has done shopping, now made lunch........but if he brings the drink in to me and says the wrong thing........oh dear, but it's because we feel so fatigued and edgy, well, that's my excuse!

Like you have always had to sort everyone in our family out.......but I think we end up paying a price.....

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It’s true , can’t be pussyfooting any more . Reading about pmr I think the majority have always been very busy active people and the fatigue can be upsetting mentally. Thank you .

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Oh I know the "tea" is never quite right!!!!!!! I think I just now fear the price for anything nice - its just easier not to do it.

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Yes, I agree.....

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I agree!

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So strange your post came through today. I was just thinking that myself and yesterday I mentioned it to my rheumatologist. I told her 6 months ago I was 16 years old.......happy, doing all sorts of things, socializing, feeling that everything was ok......then PMR......turned me into an 80 year old woman......crabby, snapping when really unnecessary, crying at times that seemed to come from nowhere, critical when I probably wouldn't have cared, etc. So I am glad you posted your feelings and have been able to read the replies and know I am not alone in these feelings and actions. In fact, my rheumatologist warned my OH of some of the "challenges" that come with living with someone with PMR and on steroids and she told him not to take any of it personally and to try and be patient with me.

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Your rheumatologist sounds a good one and yes it’s good to know someone understands and we are not alone .

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Oh it just helps to not feel so alone!!! If I could put me now and even two years ago beside each other - seriously - nothing!!! I don't look like myself and I certainly don't feel it - like you I feel I've aged terribly. Anyway we will have better days - just need to get over the bad days! Thank you.

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Aw, you have your moment, let it all out and you will feel better for it!💕. I find quite a lot of us seem to have been “caring” type of people with not too much regard for ourselves before this illness PMR/gca for me). My husband broke his neck ten years ago in a car accident and I have been his career since, but find myself (occasionally), resenting having to be kind and caring when I’m in pain, tired, agitated etc. Once that’s past I go back to trying to be the old me - which I suppose is almost impossible when our lives have been changed so dramatically and we feel so awful ourselves. When people tell us we hve changed in a negative way it just makes us feel even more guilty!! If we had a plaster on our leg or bandage on our head or a big scar we would be treated with much more kindness and empathy, that’s what makes it so difficult! We are definitely entitled to have a few “tearful” moments to ourself that’s for sure! Hope you feel a wee bit better soon. Xx

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Thank you - Ikno wit will pass - just this phase has been hanging around for a bit and I think it just came to a head today. Coping with your husband's accident sounds quite horrendous. Very best of luck to you. Thank you so much.

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Hi Hev

I can sympathise with you - I've cared for my husband for 24 years following him being being crushed by a bus! Needless to say getting the AI is the last thing we needed, I don't resent looking after him at all, but just sometimes it gets hard - I got GCA/PMR then 5 months later Cancer so it's been really hard for us both - he has worried quietly as he thought he was going to lose me....he is good though as long as I tell him how I'm feeling, otherwise how would he know - our illness is 'unseen' - he understands that as, amongst all his other conditions, he suffers PTSD - again unseen so we both have our cross to bear in that respect. The analogy of the leg in plaster is one he's used many times. I think the fact that we talk helps tremendously - it is hard to tell someone at the time when you feel weepy etc but he always says tell me then I can help if I can - a problem shared is a true statement and we all have this forum for that, I consider myself lucky to have both. Take care Hev xx

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I've lived on my own for a good few years now and am generally very happy just doing what I want, when I want .. but, I do miss that closeness and the shared talk that you describe, the glance between long-time partners that holds so much silent information. You've both suffered in the wars and come through with love, it's something special to really 'know' someone. I have a very close friend whom I've known for 25 years, he and I live the furthest away we could possibly get (Orkney and Cornwall) but once a week or so we have a telephone/skype heart to heart - we laugh and say Oh dear, here we go with our pains and pills just like our oldies used to do...but we feel so much better for the listening ear and ready understanding. We're still learning things about each other.

So glad your latest result was Hallelujah! Onwards... :-)

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Thank you Slowdown

I am sorry you have been on your own for so long and yes it is something special being able to support one another through such difficult times. I'm pleased you have your special friend, albeit from a distance, something to look forward to each week, I think that's lovely. I am conscious that all we talk about are ailments and sometimes, very briefly, wonder what it would have been like if we'd been well, but we have to take it leave it and I know what mine is.

It is good news for my latest results, one thing less for hubby to worry about, I don't want him getting upset. All the best to you :)

PS: It's taken me a few hours to be able to get through on here as each time I tried to reply a message came up saying site unavailable due to HU Certificate expiring today! It's back now, that's all that matters! :) :)

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I could have written your post back in the days long before PMR when I felt home and family had drained me dry and I'd completely lost myself. My little part time job in a library literally saved my life. Perhaps PMR came along a few months before I retired so I had a reason to continue looking after myself as I had for twenty years while working, and not get buried again? Silver lining moment. 🌤

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Oh lets hope so!! Keep looking after yourself! One lesson to be learned.

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For me now the worst part of pmr after 2 years and 4 months is the mental/emotional part. My brain doesn't work as it should or did and my emotions go all over the place. I don't have much pain but I sit on my lovely deck and don't want to do a thing

I must be sick because who would live like this otherwise. On the other hand I did all the grocery shopping in one trip and fixed some nice meals so I am getting better. Onward and upward friends. Each day we are closer to being well.🌸

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I just find it all so unchanging - I suppose I would have thought I would be at least on less pred than I was this time last year but its not really working out like that!! And I'm finding with the fatigue that I'm forgetting things that I've thought about a few seconds ago to do. Just goes into thin air. My brain is sooooo tired never mind my body!! Thank you for your reply - it does help so much.

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I am, admittedly, at a pretty low dose. But it's not as low as it was last year and it's taken months and months and months to reduce by simply .5 mg. Last year I thought I was heading to zero pred. This year I think I'm going to be at this level forever. But I don't look on it like that strange play, what is it called, where people are in a room, about to be confined to hell, but they all have a chance to escape and none of them ever walk out of the room. No, this is more like wandering through a labyrinth. We are a bit lost, and don't know when or where the end is, but the journey can be beautiful and fulfilling, too.

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Just taken me 3 months to reduce by .5mg so today I'm on 4.5mg proper! another hallelujah for me, and you by the sounds of it. I feel the best I've felt for ages - don't know if it's the adjustment of my calcium dose or the K2 or reducing or all but I'll take it whichever... Know the play but can't recall the name at the moment - for me it's all about accepting my lot at the moment - well can't do anything about it so...must be this lovely sunshine we've got - out in the garden - not sitting in it - mending a broken hose, but I'm happy.. Thanks again Heron, can't thank you enough can I - well so grateful I am...

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Salubrious weather is helpful, isn't it? 🌤☀

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Absolutely!

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No Exit by Jean-Paul Sartre?

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Yes! Thank you!

Seinfeld did an episode based on this play.

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Interesting...would like to see it..

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I think pred creates problems in our short term memory. You sound worn out and you probably are. Don't beat yourself for being sick. You are doing the best you can ❤️

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Thank you so much for responding. Yes the joys of Pred. I know it does good things but it does bad things as well!!! Most days I'm glad to be able to move - then sometimes the side effects get you.

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Hi powerwalk

I think having something that doesn’t have a definite ‘end’ or respond after a course of treatment & other people can’t see it, is much more difficult. Pred is a double edged sword & can make you irritable or a bit manic as well as totally change your appearance so is difficult for outsiders to comprehend.

Other people don’t understand what is wrong with us or have any idea how bad we feel.

I know l’ve told told this story before but l never got a card or a bunch of flowers before or when diagnosed with PMR but when l got Breast Cancer 3years ago, the Postman thought it was Christmas, the Bouquets & Flower Arrangements were endless but people could understand & relate to B.Cancer but not PMR!

PMR is 🤬🤭 & it does change you in many ways, some insidiously & others in ways that are quite marked.

I think now l’ve lost my ‘moon face’ 🌝 people think l’m fine & most of the time l go along with it because it’s easier!

You’ve carried two other invisible illnesses for long enough & now it’s PMR it’s just so unfair!

Hopefully you’ll feel some improvement soon.

Very Best Wishes

Mrs N 💅🏼

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Thank you so much. Yes I think its just everything. The Summer brings with it the body changes - there you slap in the face!!! So much harder to hide in a tshirt than a nice big jumper!!!! Oh I know - trying the cheery "I'm fine" today was just too much!!!!! Very best wishes.

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Hurrah for tunics!

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Hi Powerwalk

I could have written your post. It is exactly my story and I am sick and tired of it all also.

Lately I have made peace with the prednisone. Looks like I will be on it for awhile so why not be on the dose that helps the most. For me that is 9&1/2 - 10 mg. I can't seem to get below that. I have decided to stop trying to wean off anymore for the summer. I will try and keep track of the side effects problems like my bones. Also, I have taken charge of my diet. Low carbs, low sodium, no simple sugars, and good fats and lot of veggies. So far so good thought dealing with crippling (at times) fatigue and can't find anything that helps that. I agree about appearing normal. It takes to much energy to keep pretending that all is well.

Funny what SnazzyD said about changing the rules. It is exactly what I did. I need help but didn't let anyone know as I always did for myself and others.

I have learned to say no to things and for the most part don't feel bad doing so.

I am working on the may aspects of this condition and the one hang up is the fatigue problem. I don't understand the reasons behind such devastating fatigue.

Take Care

Lin

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Hi Linny

Making peace with Pred is a jolly good plan, as without it where would we be!

The fatigue is a tough one, sometimes l feel l have to sit down before l fall down, as per last week, l slumped into a Throne Like Chair in a Bedding Store!

Very Best Wishes

Mrs N 💅🏼

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I couldn't agree more, I am at same dosage as you, also battling fatigue......to me it's the worst side affect...it rules my life...

Tomorrow is another day......

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Yes, my fatigue is horrible most of the time. A couple days ago I got up, had breakfast, and had to go back to bed until noon. I’m in my 6th year of PMR and have tried everything.....and nothing has helped.

I was down to 2 1/2 mgs of pred and the fatigue was so bad I put myself back up on 4 mgs to get a small bit of energy. My plan was to get my adrenals tested and if all ok, to then reduce again using the DSNS.

I think I may force myself to work in the garden or take a walk every day....maybe moving more will alleviate a tiny bit of this devastating/life wasting fatigue.

I’ve been referred to a specialist for a ACTH synacthen test, but have been waiting over 3 months for an appt. Hopefully nothing is wrong with my adrenal system....but I want it checked just in case.

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oh the fatigue - is just absolutely nauseating. Thats whats so scary - it leads to a kind of depression which is what gets to me. Brain and body fatigue. Even on holiday a few weeks ago - nothing seemd to lift it. I'm find ing it difficult to make eye contact I feel so bad. Not good - people think you're just being unfriendly!!!

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Reading all these posts has reduced me to tears. I feel exactly like this and so guilty. I feel self pitying, selfish. Like all of you I’ve always been the one who copes, looks after everyone. I have a husband who has had horrendous health problems. At one point I was told he wouldn’t survive, thankfully he did and here we are 10 years later. I’ve had PMR for nearly three years, unable to drop below 10 and now up to 15, I feel it will never end. In April my husband had a knee replacement, all went well but I hadn’t bargained for the effect of the painkillers. I was prepared for his rehabilitation to be hard work but what we’ve been through has been so hard. I’m totally exhausted, at the end of my tether. I feel so guilty thinking that just for once I want to be looked after but....I look alright and here’s the really annoying one, I sound alright!!!! It’s not my blooming voice that’s ill. Earlier in the year I fell and finished up with two black eyes the sympathy rolled in, very kind but, now I feel as though I’m about to disintegrate body and soul, nothing. It will improve, I keep telling myself it will get better but it’s hard. I don’t feel, look or sound like me. I’ve no patience, can’t be bothered socialising it takes too much effort. Life seems to have shrunk and it’s all such a waste. Thanks have had my rant. My very best wishes to all of you who take the time to read my diatribe, thank you for listening. May we all see the light at the end of the tunnel very, very soon.

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Please please don’t feel guilty I wish I could help . Try to rest .

J

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Thank you. I know it will get better, eventually... Just at this moment in time I’ve had enough and just want to sit in a corner and howl. Tiredness does strange things. This weather isn’t helping, I’m a northerner living in the south of England, I swear I’m not programmed for high temperatures, thank goodness it’s low humidity!

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Me too northerner living in the south but, dare I admit it, I've got used to the temperatures, well as much as you can, I now say it's too cold back home!

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You have said just how many of us are feeling......sometimes we feel so alone with it all don't we, but we're not.....like you say, we look and sound ok........perhaps we should have P M R tattooed on our foreheads!!

Often I've been asked what the initials stand for...well, can't print hear what I would like to reply!😉

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Sometimes it’s a lonely old place. Everyone has been asking how my husband is doing, how’s the new knee? No one asks how I am....selfish of me I know but it hurts.

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I completely understand, 4 years ago John had a total knee replacement the Wednesday before Easter long story but he was left in bed till Thursday evening when the nurse said I’m glad you’re here to help get him to bathroom! Right knee replacement and I’m looking at left leg flopping down and left arm flopping down ,yes he had stroke . Taken to another hospital then told consultant not in till Tuesday . I’m pretty certain that summer was the start of my problem but he’s absolutely fine now and people still ask me how he’s doing , no one asks him how I am . I did not have pmr at the time as you have now . You are not selfish . Take care . Carol

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How awful for you, so pleased it’s turned out well. These things always seem to come at once. Since I started with PMR I’ve been afraid of what would happen and how we would cope if husband fell by the wayside. When we knew he was to have a new knee I thought ok, plan, prepare and we’ll manage. I hadn’t taken into account his reaction to the painkillers. The first week of him being at home was dreadful I had hardly any sleep. He was confused, couldn’t remember who, what, where. It was absolutely exhausting. Although he’s now doing more around the house I’m still not able to relax. He had a bad fall last week and that’s affected his mobility. It’s not helped by the new knee being his leg that was affected by polio when he was 7. So he’s never going to be sprinting around I just wish he wasn’t so wobbly! Isn’t life fun at times.....

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Absolutely not selfish!....I try to liken it to my friend who has terminal mouth cancer (certainly not comparing) but she has always with her fight said, people can see my problem...yours they can`t …..she is physically very fit!......and she says how much more she can do than me......what an odd world we live in...….

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Odd indeed. So sorry to hear about your friend. I am heard saying, at least PMR isn’t life threatening and there are far more people worse off but it doesn’t make it easier. It’s the battling every day just to do the necessary everyday tasks, anything classed as enjoyable can seem one step too far and get shelved. Another hot day so I’m sitting planning what I can avoid doing.....

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It’s amazing the stuff I wasted my time on before , housework wise . Don’t go out that much but too much for me next weekend as different things all came at once . We know and understand , just wondering if you can get to a pmr group near you sometime.

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Oh Jean

Sometimes we really do need to feel sorry for ourselves, what you need is a big hug 🤗 so I’m sending you a virtual one 💕

I’m lucky my husband’s healthy & helps me out with what l can’t manage, when l think of the things I’ve been robbed of the past 7years l could lay down & cry. At first it was the pain impacting on my life & now it’s the battle of the fatigue! I’ve managed to do many normal things but in a very limited way.

I do hope you feel a little better for getting it off your chest & remember, you can always post us a message as a little virtual support makes quite a difference.

Hope your husband makes a good recovery soon.

Try & meet up with a friend or friends for coffee or lunch, put everything else behind you for that hour or so & just be the old you if you can. I prefer smaller groups as it’s less tiring but I do organise Coffee Club for Retired Admin Friends (exNHS) & we always have a laugh.

Hope today is a better day 🌸

Mrs N 💅🏼

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Bless you. I’m just about to go for what I call a geriatric stroll along the river to the harbour mouth and watch the sea. Have a good day.

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Ah, the sea is good for the soul, enjoy xx

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I always find the water relaxing......enjoy it...

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I have had PMR for 3 years, and a hip replacement in May this year. My husband, 73 and 2 years after a heart attack, has had to become my carer. He is beginning to say how tired he is. He has mastered washing machine, shopping and has had daily cooking lessons, but it is the constant fetch and carry that he hates most! Think it has something to do with heat as well.

I fingers crossed am on the mend. Can walk few paces without crutches and PMR is behaving......just reduced to 4 mg per day.

Light at the end of the tunnel???

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It’s dreadfully hard all round. Husband is doing his best. I’m not the best nurse and a lot of the care has been given through gritted teeth. We are surviving. The light maybe a pin prick in the distance but it will get bigger. No crutches is a major step. I do think the weather has a lot to answer for, too hot and exhausting.

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I had a hip replacement recently and live alone. My sister came to help initially and I tended to let her do things. Now I am on my own I have had to do things myself. I did reorganise my life and plan things a lot more. Perhaps you could try and help your husband out a bit now that your hip healing should be improving.

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Oh scary you just described me at the moment. Nothing more to be said. Life has shrunk - so appropriate. We must hope this phase for what it is lifts and can be grateful for the good things - if we can take dvantage of them. Very best wishes to you.

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I’m sitting in the shade in the garden, it’s too hot to even think. Never have coped well when the temperature rises. PMR seems to make me even more intolerant of heat. I am though counting my blessings. One major blessing is it’s Monday morning and I don’t have to go to work. I retired early, due to husbands health and even 8 years on I still love that feeling of freedom on Monday morning. Yes, we have to tell ourselves, it will pass.....trouble is I’ve never been known for my patience! Take care, it’s wonderful to know we’re not alone. Keep cool!

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The ‘Weekend’ starts for us on a Monday through to Friday when the Shops are quieter, the National Trust Places less packed, we are off to be ‘Tourists’ in Ironbridge today!

Have a good day everyone! 🌞

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Me too......

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Ditto to All of the above comments and problems/symptoms - I am just too fatigued to catch up with friends most of the time.

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Maybe just ask one friend round for coffee or meet one in the garden centre then you can always take a stroll as well, use a trolly to plonk your handbag in & to lean on! xx

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Like that idea a lot - thanks

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I meet one friend each week in Tesco's coffee shop, I've helped her with shopping when she broke her back, we still have that coffee regardless. I also meet up with 5 other friends, from work in NHS too, every 6 weeks for dinner. It's been hard sometimes but now I seem to have turned a corner and don't sit thinking about making excuses not to go - I'm always pleased after making the effort. xx

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Hi Terri

You’ve just reminded me l need to book the next ‘coffee club’ l’m seeing some friends on Thursday before l go to the hospital for my three year review so we’ll organise a date then.

Enjoy the Sunshine 🌞

Angela xx

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Hello Angela

We have a 'standing order' for the weekly coffee, if we haven't spoken during the week we know 'it's on' and on the day my friend calls me to say she's setting off....

Just had my annual review and all okay, so fingers tightly crossed for you too. Have you had your mammogram results yet?

You enjoy this sunshine too, it is absolutely glorious, think I'm getting used it, not the heat, it just 'lifts ones spirits' doesn't it. Bye the way how's the cold? Looks like you've passed it on to the Queen - you might have to give her a miss this Thursday!

:):):)

Terri xx

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It's good to know other people are understanding, it's a very lonely time.

. I get annoyed that I'm now 74 how much longer will I beable to live a full life doing all the thing I can and want to do before I'm to old, I don't have time to spend 2 or more years feeling ill.

We just have to hang in there.

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That’s for sure Robert, we just need to strive for a new normality but still try do the things we want, I can’t be ‘Me’ all day but l do try at least to get the real ‘Me’ out of the box, dust myself down & try, even if l spend the next morning in bed!

That’s what l’m about to do as friends are calling in on their way back from Southampton!

Have a Good Day

Mrs N 💅🏼

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I couldn’t agree more. It’s such a waste of time. Like you so many things to do and places to see. It’s the fatigue that’s the worse aspect along with being told how well we look!

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I do think PMR is the opportunity for change. A very glib statement and as I've read through these posts I'm just so aware how difficult life is for some, what extra challenges they have and how they feel deserted, uncared for and unloved. Some of the posts were heart rendering and there is no easy answer. Some just need to keep carrying on because there appears to be no respite or alternative. I think often the pred also can make us feel low and emotional.I know for myself I have lost a lot of confidence planning and going to social things - before PMR /GCA was always rushing around.

But to get back to the first glib statement I think often, for me anyway, there was a need for change, although I wouldn't have chosen this way. I do try now to consider myself and not just the feelings and needs of others. I also know that from counselling training days that when you change the rules then this can upset others because you have changed and don't fit into their plans and expectations anymore. Also I now often give myself a get out clause- I'll come if I can. I used to hate letting folk down but now I feel I have to be kinder to myself and do what my body is telling me not put myself under pressure. ( that's the theory anyway - do try to keep to this but not always successful!) Folk don't understand but that's not my problem.

Life is much slower but I often wonder if those folks rushing around are really enjoying themselves all the time as they make out? Do we need extra help? Can we be vunerable and ask at times to ease our burden? Sometimes not turning up or doing certain things has made family members think twice about why I can't do something or have made them intolerant. I'll avoid the intolerant ones- they have their own agenda!!

So pleased you were able to post this post it has obviously helped others realise they are not alone and that someone understands!! Xx

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Jackie

What a thoughtful & considerate reply, in retrospect we can all look back, see the ‘Old Me’ how we were, what we achieved & too some extent are now mourning for our previous life.

My daily battle is now fatigue, most of my PMR symptoms are in remission or at least under control.

I too, was always the Planner, the Organiser, picked people up & dropped them home again, people have short memories!....

PMR is an enforced reason to change & reflect but heartbreaking non the less for the things you can no longer do.

I’m actually laying in bed wondering what we are going to do today, during this quiet time living in the rental house, we need to make the most of, as from later this week we’ll have our new grand baby & our new home. I’m very proud of how l achieved & organised the house move despite the fatigue!

As you say the Original Post has been an opportunity for others to reflect on their journey, some to pass on tips to help others see a new way of doing things.

Thank you Powerwalk for posting & l think the replies have been good for both the person who’s posted & the readers.

Have a good day everyone.

Angela xx

Mrs N 💅🏼

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Yes life will change again with the arrival of your new grandchild in a lovely way. We have to be open to change don't we? Whatever type of change. Not always easy though. All the very best for your house move. We hope to exchange contracts soon, all being well. Xx

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Hi Jackie

Where are you planning on moving to?

Angela xx

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A place called Inkberrow which is a village near to Worcester and Alcester. Our eldest daughter lives in the next village xx

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Lovely part of the country , our youngest lives Astwood Bank x

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Thank you Rosebud( so like that name!) Yes know Astwood Bank well. Small world!!

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Absolutely - thanks to everyone. And so grateful for all of the replies. Not to feel alone helps so much in all of this.

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Yes well put - thank you.

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It does me good to read through posts like this and the replies that you all give in such a supportive way. It does me good because compared to most of you I suffer a lot less in comparison. Sure I have symptoms and of course at 13mg a day I wish I could reduce that a lot quicker than recurring problems will allow. But it does remind me that in this household ( as with most of you I expect ) there are two people suffering. Myself with the PMR and my wife who has to suffer me along with her own rheumatic problems. So my part in this has to be as much try to " suffer in silence" as it has to be " support those that you would expect support from". So with that in mind and a sunny garden that could do with a little TLC, I wish you all a pain-free day.

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