My Husband has just been diagnosed with a Frozen Shoulder , is it wrong that I am a little bit happy? How experience affects sympathy.

[Blearyeyed]

So , long suffering Mr. Bee has just returned home from the GP with a diagnosis of a Frozen Shoulder , flimsy one page printout of exercises in hand , a referral to Physio and a very glum look on his face.

I am of course , not just sympathetic , but empathetic , when you have had decades of Chronic Joint Pain , and a diagnosis of PMR/ GCA , Fibro and more how could I not be , but I also feel a little bit glad.

"That's not like you Auntie Bee ! " , I can hear you yelling , you are usually so supportive ..... Mad.....but supportive!!

Well I am that, 97% , about my Husband's woes , but 3% of me is grateful that finally he may be able to really relate to what happens to me.

The last time he managed an epiphany was when he contracted the Novovirus on a trip to Paris in 2015.

Horrible , yes , but he finally got some real understanding of what I had been suffering from decades of gastric issues.

All of us got it ( 🎶Happy Holidays!!🎶) but after 24 hours of my own regular inspection of the inside of a bucket , I struggled on my coat and headed out , armed with schoolgirl French to find an open Pharmacy on a Sunday afternoon.

Seven Chemists and three miles later, I returned victorious with pharmacueticals and goodies to make everyone else feel better , that was when the Epiphany occurred.

He looked up from his , " Death Bed" , with huge appreciation , and with the Thanks asked , "How did you manage to do that , you've got this as well? "

My answer was simple , and not said to cause the Poor Man a guilt trip on top of the trots to the toilet , but just to a little grain of Truth.

" Oh , now I've stopped puking it isn't that much difference to what I feel when I have a Bad Day."

The penny dropped. Whatever colour was left in his cheeks drained away , and for a moment he forgot his own cramps and looked genuinely shocked.

" Really , like this , I'm so sorry , I didn't know it was that bad."

I smiled reassuringly , but that was probably the first time that I felt that rather naughty sensation of being 3% happy at another person being sick.

Why? Because finally my loved ones could feel Empathy and not just Sympathy for my Monthly woes.

And that's why I don't feel totally guilty for that 3% today.

As yet again , the pain in his shoulder when he does simple things , sleep disturbance and general feeling of being unwell , have given him a little sneek peek at what I , and all of you , feel everyday with PMR / GCA and whatever other Pain Issues we have on top of these too . And , with it, the sort of real understanding that is necessary for us to get the sort of support we need , but don't always get, from our Nearest and Dearest.

You see Sympathy can only go so far .

It may last days or weeks , but in time , without having their own experience of Pain , our Friends and Family , can find it impossible to understand . They hopefully don't have a Chronic Illness themselves , they don't understand that it can only be managed and not cured , and even get quite frustrated or annoyed as our symptoms linger on.

This reaction to people with Chronic Illness isn't a gender thing or even anything to do with Character either.

Male or Female , Relative or Stranger , without at least some experience of a similar type of Pain or Illness , everybody finds it difficult to understand what we are going through . Before we were chronically ill ourselves , if we are very honest, if we had Friends whom had to cancel plans because if illness regularly without warning because they felt sick we were probably sometimes irritated the same way too.

Empathy Lasts.

And, it's only through experience of something in the short term that many of the people we know will finally have a glimpse into the World we live in everyday . Then there comes the Epiphany .

If they discuss it with you , they realise that it was hard enough for them to raise themselves off a bed for a week with those symptoms , and finally, they understand how strong we actually are by trying to continue living a , " New Normal Life" everyday with those same , or even more severe symptoms for Months or Years.

My Husband has just said , " I don't know how you do it ....this , everyday!!!."

Before shuffling off to take his painkillers and grab a heat pad.

I'm so sorry for his Shoulder because I can totally empathise with the Pain.

But I also know that he will be able to understand my Pain a little more now too and thus will help him be more supportive with me in the Future when he sees that I step back from certain activities because of the Pain.

Not that any of us would want to see the ones we love suffer the way that we do

( well not unless they are being particularly annoying that day!) but we all often agree that we wish they , and the Doctors that treat us , could have our Pain for just one day , so that their treatment and understanding of us could improve a little more and last a little longer.

What now for Me and Mr. Bee ?

An evening of Couples Application of Heat rub , wheat bags and a quiet night in. Oh , What Joy!!! The Winter nights just fly by here in Wales you know!!😋😂😂😂

The Silver Lining??

I know I won't be getting a " Face" in the Future if I ask for another trip to the Microwave with the Heat Pad , a hand with rubbing in my ointment , or a moody comment if I need to cancel another plan. And that , for me will make my husband's Frozen Shoulder a slightly good thing.

Keep coping Folks , and always remember , when you don't get the support at Home , you will always find Empathy and an understanding Friend here on PMR/ GCA UK.

Hugs and Heat Pads to all , Bleary-eyed , AKA , Auntie Bee XXX😘

[Yellowbluebell]

I am quite lucky in one way because OH had broken his back way before any symptoms of pmr or diagnosis so he understands pain but he doesn't always apply his pain to my illness but he is trying (in more ways than one!!)xx

[Blearyeyed in reply to Yellowbluebell]

I know what you mean , also replies to these things are going to sound quite odd unless you have gone through it .

Obviously we would never have wanted our hubby's to have broken their back , or had viruses or Diabetes , but it does make a difference to the response we get at home , even if it's just a little.

I feel alot for people on the Forum who are at that point when they are trying to come to terms with coping with their new illness but find it hard to explain exactly how they feel to their Friends and Family because they can't understand what we are going through.

I can remember it myself years ago , and I know it's very hard and adds to the burden of coping from day to day.

[HeronNS]

I like that he was able to relate his discomfort to you. I confess that I've been the opposite. My various problems over the past few years make me more sympathetic towards my hubby who has never been the healthy sort that I normally am. It has also made me more compassionate towards others who maybe have felt wretched for years but I didn't "get" it.

There is a word for what you are feeling. Schadenfreude "pleasure derived by someone from another person's misfortune".

[Blearyeyed in reply to HeronNS]

That a great word , I'm going to write that down . Although I don't get pleasure from his misfortune quite in the same sense . I just appreciate that the odd experience that others have may help them to stop being so dismissive about the things others have to suffer.

Yes , I know exactly what you mean , I have had the same changes as my OH, thats why I gave a nod to us doing it in the past in the post.

My OH was diagnosed with his Diabetes quite awhile before my symptoms started growing , so I know , although I was sympathetic , I might not have always been as understanding or as compassionate as he deserved until I started to experience a Chronic Condition for myself.

It's funny though , as YB says , although he had the Diabetes , he didn't equate his needs with his condition with what I might need from him in my situation.

It took him having similar short term illnesses or issues like the shoulder to be able to see the parallels.

It's not that our loved ones don't try their best even without the experience , but it does make a big difference when they have that added dimension for them to often understand were we are coming from.

[PMRpro Ambassador]

Hmmm. It won't last - said Auntie Misery.

Mine had been ill long before my PMR - but somehow they must have given him far too much of the stuff that makes chemo less awful because they don't remember.

[scats in reply to PMRpro]

Fortunately we all have a short memory when it comes to pain, or there would be no second children!

Perhaps it's endorphins released by the pleasure of having it end?

[PMRpro Ambassador in reply to scats]

Hmmm - but babies are different. Or at least while they are still babies ...

[Bridge31 in reply to PMRpro]

Flight delayed until 11.10. Should have been 10 so not too bad. Having a good day today 🍒

[Christophene in reply to PMRpro]

At least with a normal labor, you know it will be over; not with PMR. At the end a beautiful baby girl with dark hair, just what I wanted.

[Blearyeyed in reply to scats]

Yes , but I still remember that the best bath I ever enjoyed was the one I had after having my eldest daughter. The feeling of relief has never left me , even if the memory of the Pain is long forgotten.

[Constance13 in reply to scats]

I'm rather unusual (not nutty)! When I see 'childbirth' on TV I wonder how many have actually gone through it themselves. All those screams! I can't remember more than clutching the bed and gritting me teeth. All very quiet!

[Blearyeyed in reply to Constance13]

I know what you mean , I just remember making a low moaning sound like an angry bassoon with my teeth clenched around the gas and air.

I think the memory of how good the bath was after my eldest was so vivid that I chose to spend the majority of labour with baby 2 in the bath , still playing a tune on the gas and air .

I suppose you could say it was my own peculiar version of a water recital!!😂😂😂

[Christophene in reply to Blearyeyed]

I just whimpered; no screams. No loud yelling; it was just around the time epidurals were starting to be used; but I missed out; no anesthesia except a saddle block at the last minute; sort of felt like a wild animal until it took effect. And then couldn't urinate all the IV fluids out without 2 straight caths.

I just kept thinking that if women have been having babies since the beginning of of time, I could do it too. Even with the saddle block , there was tremendous pressure when the head came out, but there was a mirror overhead so the Mom could see and when I saw that dark hair, it was heaven. Still didn't know if it was a girl or boy for a few seconds, but it was an experience. It was very nice of the night nurse who took care of me to stay past her shift to see my baby born.

Unlike today, I don't know why being kept flat was the norm. Gravity helps. I noticed that in Caribbean hospitals , women don't have IVs, and walk around freely, so much more comfortable, unless a known high risk situation. They seem so much more relaxed.

How did we get on this subject? I guess it's better than PMR.

[Bridge31 in reply to Constance13]

The only time I let out a cry was when the head came out with my first.

My daughter “ gets “ it. My husband doesn’t . My son would probably get it if he kept still long enough for me to explain it ! He’s always very helpful in any case.

[Marijo1951 in reply to Constance13]

Did anybody else hear Lexi having her surrogate baby for Ian and Adam on ''The Archers'' last night? (Repeated today at 2 pm) I actually thought that the actress did a good approximation of the kind of groans - rather than screams - that most of us give out on these occasions...

[Blearyeyed in reply to PMRpro]

Yes , I know what you mean .

I didn't get the same help with other Pain as I did with gastric issues until very recently , and a lot of that had to do with our loved ones need to have a GP approval of us being that sick!!!

When he does forget in the future after this shoulder thing , I can do what I have for years when my stomach plays up . I tell him I have the Novovirus Blues , and the support pops up.

Now he will understand what I mean when I say I've got Dragon Shoulder too!😋😂😂😂

[Christophene in reply to Blearyeyed]

Dragon Shoulder, perfect description.

[Constance13 in reply to PMRpro]

😂😂 I really like the "Auntie Misery".

[scats]

Sometimes I think people very close to us find it difficult to accept that someone they care about is in that much pain, even when we can't turn over in bed!

My OH accepts that I have difficulty doing things but doesn't understand the fight that's needed to continue doing them.

My son, on the other hand, seems to understand every creek my body makes and even anticipates my needs.

[Blearyeyed in reply to scats]

Hopefully , you can say to him , " you know how you felt when.... I am suffering that today " , after his recent experience and the memory might build up that bit of understanding and support you need.

I agree , that often because we find it hard to see our loved ones suffer we try and turn our heads away until the trouble has passed.

Some people just think that if they try to ignore it , or try and push us to just battle on , it will also go away , great for a short term illness but not very helpful to us long term.

At least we all have each other !!!😘😘😘😍

[Constance13 in reply to scats]

The other way round with me! Daughter doesn't really 'get it' but my husband is amazing.

[Christophene in reply to Constance13]

How old is your daughter?

[Constance13 in reply to Christophene]

50! 😂 She's starting to get a few twinges herself now so she understands a little more. She'll learn - unfortunately. I only hope she doesn't get PMR as well, arthritis is bad enough.

[Bridge31 in reply to scats]

Yesterday I asked him if he would mind fetching the tape measure for me from the bottom drawer. A lot of huffing and puffing and rustling of the newspaper.

I said I know you think I’m being pathetic. He said I don’t think you are being pathetic but I think you could help yourself a bit more. I said and in what way do you think I can help myself a bit more when this morning it’s impossible for me to reach that tape measure ?

I don’t know was his answer.

[DorsetLady PMRGCAuk volunteer]

Just be aware that a frozen shoulder diagnosis doesn’t always mean it’s a frozen shoulder.......that's what my GP thought my GCA was .....for much too long!

[Blearyeyed in reply to DorsetLady]

Yes ,thanks .

It was actually me that forced him to go to the GP , as he is of the type that he will let things linger until they get much worse and far harder to treat.

He has been having a few more headaches than usual but more of the usual migraine type and gone with meds so I will keep an eye on it.

Hopefully it is " just" the shoulder and the physio and TLC will bring relief soon.

Good grief !! I hope he doesn't end up with GCA , he'd be blaming me and convincing everybody that I gave it to him!😋😂😂😂😂😘

[Yellowbluebell in reply to Blearyeyed]

You will never hear the last of it!!!

[PMRpro Ambassador in reply to Blearyeyed]

PMR is more likely as a start with frozen shoulder ...

[Blearyeyed in reply to PMRpro]

You are all filling me with a feeling of impending doom now!😋😂😂😂😂😘😘😍

[PMRpro Ambassador in reply to Blearyeyed]

Sorry ...

[Blearyeyed in reply to PMRpro]

😋😂😂😂😂😘

[Christophene in reply to PMRpro]

Or both as happened to me,; not really frozen , but painful and couldn't rollover; I also had bicep pain and both arms hurt like hell and still do even with Prednisone. I am not good about resting, and keep busy all day long, not good. I have to have some order; bed had to be made, dishes done, laundry done, birds fed...I think I feel out of control with this illness so the chores must be done to give me a feeling of control.

[Christophene]

You are right; too many people lack empathy; some don't even know what it means. My to be ex-husband who is a Frenchman traveled to France at his sister's insistence to see their mother, in an Alzheimer's facility. When he arrived, she said "Who Are You?" He only felt his pain, not his father's, not his daughter's, not mine for leaving me while I was sick. He missed his return deadline to complete his green card process. Whiskey takes his pain away. Gone for 9 months without a phone call. Now he is inundating me , begging me to move to France so he can take care of me. His sister had no thought that she ruined our marriage and interfered in my life, not just his.

He could have gone and been back in less than 2 weeks. But that is what happens with no empathy, and so surprising given how loving his parents were/are. I will not be going to France to live with him to be sure. So I understand lack of empathy. And I do understand your tiny bit of pleasure at your husband's finally getting it. You are very lucky and so is your husband to have you.

[Blearyeyed in reply to Christophene]

I feel alot of empathy with you , because before I was lucky enough to meet my husband, I did have a few very bad relationships with some very selfish and hurtful people.

It's not just partners that can make us feel like that too , sometimes it's our parents that often expect our attention and sympathy but are not capable of showing the same in return.

I know I'm very lucky with Mr. Bee . Especially now that I finally allowed him to really see how hard getting help through the Health System is , and how many walls I have hit against to get a diagnosis , and still need to hit to get the help I need.

I think that has improved his ability to empathize with my feelings and not just see the symptoms.

I have learnt that being kind but totally honest about my Health with the ones close to me can make a huge difference to how well I can cope with my Chronic Illness . It has lifted alot of the Mental burden of being ill.

There were many years when he didn't understand how his attitude to my Health could be incredibly hurtful. Especially , early on , when he didn't realise that saying things like ,

" They wouldn't discharge you if there was something wrong" , or " If you tests are ok it can't be anything bad " or the usual " You will feel better if you...." would add to the sadness

Those are the sorts of things our loved ones say, I know, that they think will help , but instead, it usually makes you feel hurt and unsupported.

Still , he stood by me , and I know a lot of people , like yourself , are not that fortunate , I am grateful for him , I just wish everybody else had the same support.

You mention his Daughter , is that your Daughter too?

At least we can help . You have support here now when you need it , and I'm sure everyone reading your story will be impressed with how well you have coped .

You obviously didn't just learn French from those ten years but a great amount of strength and resilience .

Take care xxx

[Christophene in reply to Blearyeyed]

Thank you for kind reply. A lot is my fault b/c I ignored some red flags. Manipulative; tried to get me to buy him a boat! I did not. Because my father liked his whisky, I made the incorrect assumption that he was like my Dad, who was not an alcoholic and who worked hard both in and out of the house, and was very nurturing to me as a child. My mother was always on his back about drinking which I thought was an over reaction., and I didn't want to be like her.

Monsieur X once took my TV out of my vacation house he was the guardian of in my absence. He was recommended to me because of his skills. When I arrived, the TV was gone. At first, I thought the cleaning girls took it. And my favorite DVDs with French subtitles were gone too.I called him. He said "Don't worry" I have it "for protection"; it never needed protection before, and the house had a security system which he knew how to disarm. He had a TV, but forgot he locked it in my kitchen closet. That's alcoholism. Black out.

I drove to his bungalow where he was sitting with a glass of Scotch watching my TV. His excuse was it was the Christmas season and that he had hurt his back working on my house . Clue: His kind GP made house calls and he told me the Dr. threw him in a cold shower.

I unplugged the TV, and ordered him to carry it to my rental car, bring it in, set it up, and then drove him home. These are just a couple of examples. I also said F-U, but the phrase does not exist in French, I'm sure today people understand. As pronounced it means seal as in the animal.

To avoid problems with immigration , we lived together by moving from my house in the US ,to our apt.in St. Martin every 90 days . The only reason we got married was to stabilize us b/c the constant moving and packing was wearing me down. We were only legally married for 2 years. I never put his name on anything, and he has no claims against my money or property b/c all money and possessions were owned by me before the marriage, and unless the "beneficiary" of a green card spousal petition completes the process by a second interview 2 years later after the first, the "beneficiary" has no rights to spousal assets.

He was never physically abusive, but had a big mouth. That is not to say we didn't have fun together , and enjoyed trips to NYC , only 2 hours by car from my home, and a delightful trip to Normandy, ,saw a lot of wonderful attractions , including a visit to his parents and the wicked sister-in - law.

We also met his grandson; since then, he has had a granddaughter. But seems not to have not much interest in them.

He did me a favor in the end. Alcoholism is a disease; but, it can be controlled. Now there are meds that block the desire to drink, which unlike Antibuse, do not make the person sick if they slip. He was sober when he lived with me, and he was a completely different person. So sad.

Thanks again; I realize I am off topic, but it is about lack of understanding and empathy. I am happier alone. My daughter and 14 year old granddaughter are very helpful when I need it. I try to stay as independent as possible which is 99.5% of the time. You saved me a trip to a psychologist.

I hope you continue to do well with your husband's new found empathy. It is so very important when one is ill and has a chronic illness. Although very personal, I put it out in the community in hopes that it might help someone else who feels alone with a spouse or a partner.

Best wishes in your recovery when PMR burns out. I pray it will for all of us.

[Blearyeyed in reply to Christophene]

It does help , you and the Community .

You verbalising how these issues affect many people on the forum .

And we all know how any sort of conflict , especially ones in relationships , can have a huge impact on our symptoms and General Health.

I just glad I gave you a post to talk on , and I'm also glad that despite the dark times you have been through you have a daughter and granddaughter to lighten the load and you usually feel over 90% you.

There is always a little silver lining even with the darkest clouds .

Take care xx

[Christophene in reply to Blearyeyed]

Thank you.

[Christophene]

The only thing I got out of this 10 year relationship was learning to speak French by immersion.

[Blearyeyed in reply to Christophene]

I was still thinking of your experience and it just reminded me of one of the three pieces of advice my Father gave .

He said , " If you want to be Happy in Life there are three types of people you need to avoid. Those that Give advice but never Take it. Those that Take help but Never Give it , and those that expect everyone else to Give and Take but never do it ."

Despite the odd mistake I have always remembered these words and they have served me well. xxx

[Christophene in reply to Blearyeyed]

How wise your father's words.

[Christophene in reply to Christophene]

Really, I did learn French from him. I took ( 1 )10 day immersion course held in the summer at Dartmouth U. in New Hampshire in the States.. I picked up words and phrases from my travels with my wonderful husband of 37 years. But just words like Bonjour, Auvoir, Ou la toilet? Merci was all I knew. But my student language was Spanish, but French took over my brain. It is a beautiful language.

[Marijo1951 in reply to Christophene]

My nasty ex-husband is French too. He's back in France now, but worked for about 20 years as a translator here in London. The one thing I thank him for (apart from my youngest daughter) is my improved knowledge of French, which I had learned at school but was not very proficient in. One of my major regrets about having these ailments is that when I was first struck, I had to give up my French studies because I was in so much pain and had that terrible ''brain fog''. I do comprehension and grammar exercises online and read as much as I can, but it doesn't compensate for a couple of hours a week with my lovely tutor Valérie

[Blearyeyed in reply to Marijo1951]

I know exactly what you mean about learning and " brain fog" .

I have had trouble all of my life with certain things , in my youth people blamed what I had been diagnosed then , pubescent Epilepsy , but now the same symptoms are back again the Specialists have agreed that it may not have been Epilepsy at all , but severe Neurological symptoms to do with the Ehlers Danlos / Hypermobility and Dysautonomia that it causes.

My issue is with learning or comprehending oral communications . Aural ( hearing) Dyslexia.

I can read fluently in 12 languages , but cannot have a good conversation in any of them because my brain can't keep up with the spoken words.

It was funny on that trip in Paris , I could cope when people spoke very slowly but when someone just assumed I was French and talked to me in the street , I said had to say ," pardon , I'm English" , they would say it in English , then I would totally confuse them by repeating what they said and answering their questions in French.

I'd don't suppose the eyeliner moustache I'd drawn on for a visit to the Dali Museum , and forgotten about , on one particular day did much to help them be less confused either!

I have the same problem with Numbers , it doesn't matter how many times somebody gives me a phone number or code on the phone , if they say more than two numbers in a row I lose my place and my brain switches off , each number has to be said individually or it's gone.

It's one thing that I have been really disappointed about over the years , not being able to enjoy chatting in other languages .

[Marijo1951 in reply to Blearyeyed]

Gosh, how frustrating for you to be so obviously very intelligent but not able to make the most of it. One of my daughters has been diagnosed with Ehlers Danlos (the least disabling kind fortunately) and another has Hypermobility, but I don't think they have other neurological symptoms.

[Blearyeyed in reply to Marijo1951]

It's not held me back , and I just thought it was Me , like we all do , Aural/ Oral Dyslexia is just the name for it .

It's never been so severe that I couldn't study of do my work with a few adaptions.

It just means I can't enjoy a good chin wag in the languages I can read in .

I am a " Spelling Bee" genius but only if I can write it down first , just cant spell out loud unless I'm reading what I have written down.

People laugh , they say how do you spell ...... And I have to say , " Hold on a minute " and write it down , it can be a huge word , and it's fine , but then , they say now spell .... anything over five letters that I don't use all the time it's impossible.

Maths was never a problem for the same reasons , in my head , or on paper , fine but no being able to say a list of numbers unless I was reading it out.

It doesn't stop me beating people at Countdown!!

The funniest thing is trying to sing songs that have spelling in it .

I have my friends falling on the floor in laughter ( or running to the loo!!) With my attempts to sing "R-E-S-P-E-C-T " or " "D.I.V.O.R.C.E" .

It's usually 🎶" R - E- S.....argh G ... No, F , S ... Oh. Stuff it " 🎶🎶😋😂😂😂

[whitefishbay]

Have to say you made me chuckle as I start my day. True too.

[Blearyeyed in reply to whitefishbay]

Best way to start the day , with a chuckle instead of a tear!😘

[whitefishbay in reply to Blearyeyed]

so right.

[puffyface]

Very well said! We love them, but on the odd occasion where they get a little glimpse into our world...it helps them to understand. X

[Blearyeyed in reply to puffyface]

I'm just hoping his glimpse doesn't last too long I have some boxes that need moving!😋

😂😂😂😂

[scats in reply to Blearyeyed]

Now that's a feeling I know well!

[Blearyeyed in reply to scats]

Well after the rude awakening I got half an hour after I went to sleep last night from Mr.Bee to rub some more ointment into his shoulder , I might understand his pain , but I'm certainly not feeling very sympathetic this morning , let alone empathetic.

Never in all of these years would I have dreamt to wake him up to do that , in fact I think the only time I have woken in him for anything was when my waters broke!

[scats in reply to Blearyeyed]

OH refuses to come to bed when I do as it's too early. I know he's dozing in front of the TV!

Probably 90% of the time he wakes me when he comes up, not on purpose I know, but some nights I'm so mad about it that I can't get back to sleep. Those are the nights when I get 30 mins sleep.

If I can't sleep Idon't fight it I just get up.

[Blearyeyed in reply to scats]

That has probably been the most annoying habit of my Family over the years , despite constant reminders to be quiet when they come in just in case I'm asleep or to leave me if they see me napping , they still walk in the house bellowing ' Hello' like an announcement of the Second Coming.

If that doesn't work they shake me awake to see if I know that I have dropped off !

It is like the message , " Don't Disturb" just won't compute.

Yet , nudge them to wake up for something important and it's like you have raised the Kraken!!!

[scats in reply to Blearyeyed]

I always go to the bedroom and shut the door.

They always manage to shout out and slam the back door.

[PMRpro Ambassador in reply to scats]

I hear you - got one of those too! What really used to get me was when I clipped his ear and he didn't respond until the 3rd attempt - and then insisted he was NOT asleep.

The only consolation now is we have 2 bathrooms, one ensuite. He uses the other and does make an attempt to creep into bed with no light. It depends how long I;ve been asleep - I can sleep through it unless it was just as I dropped off or very late.

[scats in reply to PMRpro]

At Bee's suggestion I have some soft foam balls. Any sleeping in front of the TV before I go to bed and he gets attacked by foam balls. My aim is getting very good now, but he still insists it's not "bed time".

He won't nap during the day because he's not that old yet! Perhaps not, but he has been ill.

Since his "bladder problems" OH will only use the en suite as that's where he is comfortable. It is such a cause of frustation!

[Hidden in reply to scats]

I think our own bathrooms are the ideal way forward for what ever reason! 😉

[scats in reply to Hidden]

I agree!

We have two bathrooms, I either share with him or our son. The other one is at the end of the landing and there are times when I wouldn't be able to wobble there in time!

[Hidden in reply to scats]

I’ve got the En Suite & Terry has the Main Bathroom

It works for us 💕

[scats in reply to Hidden]

I obviously haven't got your negotiation skills!

[Hidden in reply to scats]

Bathroom is very Slick, Grey Tiles & quite Masculine so it wasn’t a contest really. 😂

[Blearyeyed in reply to scats]

You don't need negotiation skills just come of those signs for the door like kids have on their bedrooms , " Scats Bathroom . Beware!! Keep Out !!! This means you xxxx"

[PMRpro Ambassador in reply to scats]

I find scare tactics more effective ...

[PMRpro Ambassador in reply to Hidden]

Absolutely!!!!

[Christophene in reply to scats]

So true . Once you are disturbed, your sleep is finished.

[Marijo1951]

More than 20 years ago I had a frozen shoulder which - apart from 4 goes at childbirth - was my only pre-PMR/GCA experience of excruciating pain. So I can certainly empathise with your husband's current ordeal. Your story made me think of my own then-husband's behaviour when I had mine. He, by the way, was a hypochondriac who feared the worst at every little twinge, and required constant sympathy and attention, but he treated my illness as an inconvenience to him rather than a misfortune for me.

A couple of examples stand out in my memory. Once when he was home early he made a big point of saying he'd cook dinner that night. We went shopping and I picked out some simple things that even he could manage to cook. He also spotted an extraordinary offer on one of his favourite red wines and bought 2 bottles. We got back home and shortly afterwards he opened a bottle. We got to about 7 pm and he appeared in the kitchen - ''At last'' I thought. He proceeded to open the other bottle, poured out his first glass and returned to the telly. I sighed and began getting dinner ready. The other time was when he agreed to come with me to the local Tesco to stock up just before Christmas. This was central London where we don't drive to the shops, but trundle a shopping trolley along the pavement and of course, it was also before online grocery shopping. As we approached the shop, he suddenly picked a crazy argument, turned on his heels and left me alone. I'll never forget struggling in that crowd where it seemed everybody was conspiring to bump into my shoulder and then dragging the trolley plus 2 shopping bags home. My youngest daughter, who had always adored her dad, was 11 and old enough to make judgments on what she observed. I think these incidents were the start of her dislike of him and her current estrangement from him (though there were plenty of other factors)

I live alone and often think how nice it would be to have a kind supportive partner, but I know from experience that it's better to be single than to have somebody who is utterly selfish and narcissistic. I do envy those of you who have imperfect but essentially loving partners.

[Blearyeyed in reply to Marijo1951]

Thanks for sharing that story.

I completely agree sometimes it is better to cope alone than get the wrong sort of support.

Your husband reminds me of my Mother , I suppose the only thing I can say is she taught me from an early age not to take caring people for granted .

He may have needed a few learning experiences and quite a bit of training over the years but Mr. Bees heart is in the right place , I just wish there were more like him to share around.

Hugs xx

[PMRpro Ambassador in reply to Marijo1951]

My MIL was like that - only interested in others on the basis of how it might impact her. The scary thing is that although he has been OK he is getting more and more like her. So far he only shows minimal tendencies in that direction but they are there at times.

[scats in reply to PMRpro]

I think our husbands must have been seperated at birth!

[Marijo1951 in reply to PMRpro]

He certainly took after his mother... Actually I've got to stop dwelling on this - I've just remembered the time when I had a miscarriage. The rain's stopped and I'll risk saying I'm delighted by the main item on the news, so I'm definitely feeling better.

[PMRpro Ambassador in reply to Marijo1951]

Me too!!! What comes next?????????????????????/

[Marijo1951 in reply to PMRpro]

I just hope it's something unequivocally good...

[PMRpro Ambassador in reply to Marijo1951]

Think it would be about time!! There was a report in the Guardian yesterday that the gubmint have announced that UK students and pensioners living in the EU will be covered on the same basis as the EHIC card for 6 months even if there is a no-deal b-word. So generous - but we suspect they realise all us oldies coming back for medical treatment in the winter would sink the NHS!

[Marijo1951 in reply to PMRpro]

Clever wheeze! You're right, it probably would... I attend the Royal Free for the ailments and currently the Whittington for my wounded leg, two major north London hospitals. The staff are all great from the cleaners to the consultants, but there is always this sense of anxiety and the need to keep things moving. I think there must be so much more pressure in less prestigious hospitals in poorer areas.

[PMRpro Ambassador in reply to Marijo1951]

My nurse daughter says the endoscopy suite where she works is manic - glutton for punishment though as she has joined an agency tasked with recruiting staff to run weekend clinics to reduce waiting times across Scotland. OTOH, she is still only working 5 days a week, being paid properly for the extra one as opposed to unpaid extra hours when they can't get away at night and in the long run it should make the NHS days less awful.

The paramedic one is doing an MSc course - so at least this winter will not be spending her entire day on the run from one pre-hospital emergency to another in rain and snow but doing the hospital rotation that goes with it.

[Marijo1951 in reply to PMRpro]

I had a truly wonderful paramedic team when I gashed my leg. It's so unfair that staff like that can't relax and escape the stress that goes with the current situation.

[PMRpro Ambassador in reply to Marijo1951]

It used to be that if they had a distressing job - involving death or devastating injury - they got to stop, have a cup of tea and debrief. Police still do. The Ambo Service don't any more. My daughter attracted nasty paediatric jobs - had a name for it! And she, like many others developed PTSD.

The best thing about overloaded EDs is that they can go to the loo one at a time while waiting to hand over a patient!

[Christophene in reply to Marijo1951]

I so understand.

[Marijo1951]

Yes I'm sure you treasure each other and will pull through it all together.

I'm feeling a bit low at present, what with my gashed leg which doesn't want to heal, the downpour outside and the current political situation... What have we done to deserve the worst government and most inept opposition possible? (Sorry, had to get that off my chest to somebody!)

[Blearyeyed in reply to Marijo1951]

Better out than in !!!

Now you can start the day a little lighter.

It does feel like the World is attempting to go to Hell in a Handbasket at the moment , probably because all the sensible people are stuck at home dealing with their PMR.

How long has the leg been healing now , please remind me.

[Marijo1951 in reply to Blearyeyed]

''All the sensible people are stuck at home dealing with their PMR...'' Absolutely spot on!

I had my accident on 30th August so it's been 3 and a half weeks. I'm putting together a post which I'll probably send later today as I could do with some advice. What would we do without this forum?

[Blearyeyed in reply to Marijo1951]

Absolutely , and pop that post up with the details , I'm sure we can put our combined wisdom to work and help you a bit. Or at least give you some cheer to help you feel better.

In the meantime , as Scats just reminded me and I used to say to my girls ,

"It's a Mega Toast and Bagpuss Day !"

Grab a blanket and snuggle in.

( Best way to hide from the storms, both political and meteorological!!)

Hugs xx

[Marijo1951 in reply to Blearyeyed]

I know. I've just had breakfast and pred and the sofa beckons... My bloody insomnia, which I thought had finished, has returned full strength!

[Blearyeyed in reply to Marijo1951]

Ditto! I think we could start an insomniacs convention there are that many of us watching the night slip away at the moment.

[Yellowbluebell in reply to Blearyeyed]

Even better is an electric blanket. Not the old fashioned ones for the bed but a lovely soft heated blanket for the settee. Youngest had one and i liked it so now i have one. Better than a hot waterbottle as it bever goes cold and it has variable heat controls!!

[Christophene in reply to Marijo1951]

We in the US too. Nancy Pelosi , Speaker of the US House of Representatives somberly announced an impeachment inquiry concerning Donald Trump will begin.

Even watching the news causes us stress. But Madane Pelosi, a mother and grandmother, and long time politician is shrewd and wanted to be sure she had sufficient bipartisan support. I do watch BBC and France 24 too. But we are all in rough waters with no end in sight.

And I can't stand a man with dyed orange hair. As a joke last Christmas, I gave the girls in the family D.T. dolls; there was a race to the microwave.

[Marijo1951 in reply to Christophene]

I saw Nancy Pelosi's announcement (insomnia) and thought well, maybe there is some justice in the world. I hope things don't backfire.

[rewerb]

Top girl. Brilliant post

[Blearyeyed in reply to rewerb]

Thanks so much , glad you enjoyed it , hugs x

[Mipsie]

While I agree with most of what you say I have to say that ‘real’ frozen shoulder is the worst pain I have ever felt. It was a good lesson to me because, as a physio I used to think ‘it can’t possibly be as painful as patients said’ Then I got one! The screaming sickening pain was horrendous.

[Blearyeyed in reply to Mipsie]

Absolutely agree , it's sad but sometimes you do feel that a Doctor does need to experience things themselves but for they realise that what they expect us to do actually isn't possible.

" Real" frozen shoulder can definitely cause severe pain and is very debilitating . I had one many years ago , which is why I know that the pain Mr.Bee is suffering is so similar to what I have when I " Flare" from the combo of GCA/ PMR with Fibro and EDS.

You have made a good point about that area of Empathy to between illnesses and diseases. Some people can have a more severe version of one thing than another , so the pain they feel at times with PMR under control can be less severe than the pain they had from an injury.

All peoples pains are equally important and gives hard lessons no matter where or which Health issue it comes from .

Thanks for sharing xx

[Bird-67]

Oh thank you ladies for brightening my day, have really enjoyed reading all your funny posts.

Well done xx

[bunnymom]

I have always thought I had a low pain tolerance. My daughter pointed out to me that actually it's probably higher than I think. Over these 3 and a half years I believe it gotten higher. That's what chronic illness does for you.

[Blearyeyed in reply to bunnymom]

Definitely , years ago I classed some of the Pain issues I have now at a 8/9 but now feel like the are more of a 5/6.

It's what makes me smile when I go to see a Specialist and they ask where I would rank the pain if this or that on a scale.

I try to explain to them that it doesn't really work like that , you experience of Pain changes over time as you get more used to dealing with it.

That's why a Pain from a paper cut that you don't get too often can make you react like the sky has fallen in even if you have been dealing with a Class 1 Migraine all day.

So I try to get the GP to understand , if I say my Pain is a 9 these days they should sit up and start listening!

Take care x

[PMRpro Ambassador in reply to Blearyeyed]

And why the smiley (or otherwise) face they use for children works better for adults too

[Christophene in reply to PMRpro]

My granddaughter was really ill with a virus and threw the smiley face on the floor, and told the medical assistant to leave the room, telling the assistant that she was very immature. She was only 11 at the time, normally very respectful and cooperative, but it shows what illness does.

[Christophene in reply to Blearyeyed]

What a stupid idea that was to ask patients to quantify pain in numbers. I used to underplay my pain, but don't anymore. Not that it gets you anywhere. Thankfully, my GP talks like a human being , and doesn't use those silly sheets.

It's about as artful as painting by numbers, which I suppose can be relaxing.

[Blearyeyed in reply to Christophene]

You can't escape it in the UK , there isn't a clinic I have been to that I haven't had to fill out the 1-10 pain assessment at , and every Consultant I have seen over the years in Clinic or A and E always asks the question , " On a scale of 1-10 describe the pain you are suffering."

I agree, just like The Prisoner in the TV series of the same name was a Name and not a Number , Pain cannot be described as a simple digit either.

[Marijo1951 in reply to Blearyeyed]

I have a high pain threshold which during the time of my frozen shoulder and the height of PMR/GCA seemed a definite advantage. I couldn't imagine pain worse than that.

However it has its dangerous side. When my daughter first moved to the US 8 years ago,she had a UTI that she neglected at first (I think because she hadn't yet got used to navigating the insurance system). When she finally sought help, she had sepsis. The doctors were amazed that she could walk and function and hadn't collapsed with the pain. I well remember the phone call that began ''Hello Mum. I've got some news and first of all you mustn't panic...''

[PMRpro Ambassador in reply to Christophene]

Although it is developed together with patients, the trouble is that different patients have a different view of excruciating pain and if they have never experienced severe pain before whatever they say with a broken leg (for example) will be with little basis behind it.

[Joaclp]

Not in the spirit of raillery that has had me laughing, but relevant. Just got a call from an old friend who wanted to talk about her pain from COPD and crippling arthritis. She said I was the only person who would understand her because I was in daily pain. Didn't even know she knew!

[Blearyeyed in reply to Joaclp]

That's always good to discover though, not that we want our friends to be daily experiencing the same things we do , but at least when two friends have that you can be Empathetic Phone Buddies , it makes it alot easier talking to someone who can really understand.

That's why this forum is so good too.

You know you will always have someone to talk whom can Empathize and really discuss what Chronic Illness is like , it's great feeling that you are not alone. xx

[bunnymom in reply to Joaclp]

Exactly!!

[luv2read]

Blearyeyed,

There are so many times that I visit this site and sympathize with so many of these friends, that I sometimes can't wrap my head around all the suffering. Then there are days, like now, that I read your post and chuckle. I love those days! Thank you for putting it in perspective in such a way that yes, we feel bad for your hubby, but boy, does that make me feel just a tiny bit better!

[Blearyeyed in reply to luv2read]

You take that 3% giggle and run with it !!!

Just glad that my husband's Frozen Shoulder can help you feel a bit better too , even Mr. Bee said earlier that he was glad that my forum chums were benefitting from his suffering!

😋😂😂😂😂

Thanks for your kind reply and keep smiling xx