how do people get their parters to understand them when getting so irate etc when been on high dose for so long.

[Ronzy]

it’s a big big problem for. Me

[SheffieldJane]

Do you mean that you get irate easily? I have a short fuse too, it’s a side effect of Pred as you know. I just try to explain to my husband when I am in a calm mood and ask him not to rise to the challenge. Mostly we manage between us to keep things a bit calm, but it does fly out of your mouth before you have time to engage your brain. I can be a bit frosty in pharmacies if I get someone with an unhelpful attitude and on-line shopping if I feel conned. Tell Mrs Ronzy that we are all bad tempered , not just you and we are very sorry and love you really.

[Blackcat1M in reply to SheffieldJane]

I wish my OH was understandings he says you cannot blame the pred now you have been on it too long ….

[Amber1414 in reply to Blackcat1M]

Send him to talk to your Dr.

[Blackcat1M in reply to Amber1414]

Which one ?

[Ronzy in reply to Amber1414]

do the doctors understand 🤷🏽‍♂️

[SheffieldJane in reply to Blackcat1M]

That is not how it works. Let’s face it, our nearest and dearest just want it to stop. Well so do we, so do we. 🙏🥺

[Ronzy in reply to SheffieldJane]

think I haven’t got a one some time

[Hunter134]

Iam lucky that my husband since retiring is a quiet man.We do argue but he lets me win.Maybe aft 52years of marriage he learned that.lol

[SheffieldJane in reply to Hunter134]

That is all we need 😉

[Koalajane]

I am lucky that I somehow stay calm, my husband has a shorter fuse than me!

[SheffieldJane in reply to Koalajane]

Perhaps he’s expressing the frustrations for you and you don’t need to.

[jinasc]

originalText

Try to get family and friends to look at this and see if it makes it any clearer on an GCA & PMR which are auto immune illnesses which are attacking your body and do cause unlisted side effects, ie mood swings, dropping items, forgetting where you put item and putting them in the wrong place.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hi,

Your link seems to have disappeared -new glitch with HU! If you edit reply after you’ve added a link it’s rejected and leaves “originalText” instead -no flaming use…

So have relinked your original here -

healthunlocked.com/pmrgcauk...

Will have to get my whingeing hat on again ….

[cycli]

I have all of that Ronzy. Like Shefield Jane I also have a short fuse. It really can't be helped and partners who tell you it can will never see it because they have their own mind set. Mostly it's their frustration and their own worries behind this and some can't understand however hard you try. It's just another cross to bear. Just think how hard it is for us to try and understand.

[67Blue]

I'm afraid as my husband can't actually see anything he still hasn't accepted GCA/PMR. either, expects me to be cheerful all the time. And keeps saying can't you reduce those tablets despite what I say, but then as he won't wear his hearing aids he doesn't hear what he doesn't want to. When I had my two cateracts off because he could see the eye shield, had waited hours in the car etc (owing to Covid restrictions) he seemed more concerned about that.Recently he said all I did was sit on my a... and it is getting bigger all the time. I really wish I hadn't pushed myself to do so much at the start, and to be honest he is happy surrounded in dust and dirty dishes. Vacuuming is a no no for him. But wouldn't consider a cleaner. So not all men are helpful individuals. So I envy the ones with thoughtful caring husbands/wives who want to understand. But he is happy to go to the pharmacy etc if i need anything that I can't get on the C&C, so I guess there is some good in there somewhere. Good luck keep trying.

[PMRpro Ambassador in reply to 67Blue]

They don't hear what they don't want to hear even WITH hearing aids ...

[SheffieldJane in reply to PMRpro]

That’s a fact.

[cycli in reply to SheffieldJane]

no it isn't

[SheffieldJane in reply to cycli]

Sorry cycli my own dear husband refuses on principle to respond to a yelled question from the top of the house. I stand corrected and can only speak to my annoying habit of bawling downstairs when he is probably cooking a marvellous meal for us. 🌻 Happy to be pulled up for generalisations any time.

[cycli in reply to SheffieldJane]

that's ok.SJ. Just it is so easy to generalise. I do my own shouting like you and regret it. I'm completely grounded at the moment. So weak and useless but can't do anything much about it. It could be a reaction to reducing but I am now convinced having read up on it that it is pred induced myopathy. The wastage is severe. Not everyone gets it this bad fortunately.The only answer seems to reduce the pred by stages until the damage isn't so severe. All this just adds to making us grumpy.

[SheffieldJane in reply to cycli]

Grumpy puts it mildly. I can remember you clearly when you joined the forum. So fit, so motivated, so determined to beat this thing quickly and hang on to your tip top fitness. You are still that man and you will get back to health and control. You are learning a new skill and it’s painful, that of patience and waiting and gradually building health and strength and dare I say wisdom?

[cycli in reply to SheffieldJane]

thank you so much jane. all so true sadly. not sure on wisdom. has brought a tear or two. so kind.

[Ronzy in reply to SheffieldJane]

It’s so so hard it’s begging to be my biggest issue,and Gord we have plenty to day I really blew me top scream my worst outbreak, to cut a long story short as I struggle with my eyes a little more nowt to do with this pred mess macula in one eye getting better. My daughter of 50 says dad DAD DONT BE BLAMING YOUR MEDICATION ALL THE TIME. sorry if it doesn’t all make sense. 🍀🍀🍀🍀🍀🍀🍀🍀🍀

[cycli in reply to Ronzy]

my daughter said she didn't care. it's their way of saying that they don't want to understand why you are now so useless. It's their problem really., but it does hurt sometimes.

[SheffieldJane in reply to cycli]

My daughters don’t really understand, but it is improving. They do think that steroids are a choice and I need to get out more. I feel irritating if I try to explain my limitations. This invisible disease does not invite sympathy and understanding. Or maybe it’s scary for them. My son is pretty good but he should be, he’s a psychology graduate working in a crisis house for people having a mental health crisis. He listens and says the right things. Bit of a busman’s holiday for him at home, poor thing.

[SheffieldJane in reply to Ronzy]

It does make sense and the medicine does trigger it, I was always a gentle placid person, I don’t know this snidey witch who takes me over at times. Like a thing possessed I am! 🧟‍♀️

[cycli in reply to PMRpro]

THEY is an unfair stance. all men aren't like that. Men and women on occasion see only and hear only what they want. Sometimes it is because they are afraid of the outcome and they try not to think about it or want to hear the reasons. Some people have a higher tolerance of the mess around them as others see it and some are just lazy or unprepared to help despite the obvious need . It's just that you can't lump ALL men together because you have experienced that unfortunate position.

[PMRpro Ambassador in reply to cycli]

I didn't specify male or female - if the cap fits, wear it ...

[cycli in reply to PMRpro]

haha. that's a good wriggle, but you responded specifically and the inference was clear. I'll forgive you but I'm watching.

[SheffieldJane in reply to PMRpro]

You are such a darling PMRPro, sorry but you are. 🌺

[PMRpro Ambassador in reply to SheffieldJane]

😇 But if only you knew me "in real"

[SheffieldJane in reply to PMRpro]

That’s what I respond to you. You are very authentic.

[Ronzy in reply to PMRpro]

That would be fantastic

[Ronzy in reply to PMRpro]

That’s a good one I keep saying it this pedestal to no avail.

[cycli in reply to 67Blue]

I'm sorry to hear that as it makes your condition even harder to bear.

[Carriemetz in reply to 67Blue]

Complains you’s sitting on yr backside. Doesn't mind the dust and dirt, doesn’t do it himself, but won't consider a cleaner? Time to sort this man out - explain again but this time, poke him in the eye at every point you make. Works wonders!😀😘

[PMRpro Ambassador in reply to Carriemetz]

If I were there he might find himself a bit hungry too ...

[Carriemetz in reply to PMRpro]

Yep- the poke in the eys was metaphorical, but that I have done! It always seems to result in his ‘signature dish’ - baked potatoes with tinned tuna and ‘al dente’ (ie not not fully cooked) carrots. But I was and an very happy to eat it! Time off!

[PMRpro Ambassador in reply to Carriemetz]

Mine "cooked" in the UK - steak pies and bacon. Chips - frozen, in an electric fryer ...

[SheffieldJane in reply to Carriemetz]

I actually love that!

[Ronzy in reply to SheffieldJane]

olso Jane too many other issues had an heart monitor on to day doctors donot know why I have know why no energy all the very best. 🍀🍀🍀🍀🍀🍀🍀🌹🌹

[SheffieldJane in reply to Ronzy]

It sounds like your doctors are taking you seriously. I am sorry that you feel so worried. I hope those 4 leaf clovers start to work. 🍀🍀🍀🍀🍀🍀🍀

[lewislabrador in reply to 67Blue]

My partner I've lived with for6yrs is exactly the same! We purchased jointly a beautiful barn but since moving in and having 2 TIA's because of his lazy narcissistic ways the place has been SSTC am moving out and going it on my own with my lovely old Lab......no more a slaveI'm 73 have been diagnosed with GCA but experts not in agreement! My GP is great

👍

[67Blue in reply to lewislabrador]

Well done, and may your future be a happy one with good health, sadly I chose my path years ago and have been saying for years I am too old to leave, and haven't the strength to fight him for my dues. Which he says are zilch. I know all about narcissistic people.Stress is a terrible thing. Take care and be strong.

[Ronzy in reply to lewislabrador]

🍀🍀👍👍👍👍

[Ronzy in reply to lewislabrador]

thanks for that Jane. You obviously know how wired it is living with pred

I am so confusing my wife and family every day gets worse as you say the

Professional are next to useless. I have stopped self diagnosing just say it’s seames

10 times worse that last time I had PMRA

Sorry repeating myself

[PMRpro Ambassador in reply to Ronzy]

They are looking at it Ronzy - see the survey I have posted about today

[Ronzy in reply to 67Blue]

o dear it a big big problem

[Joanbill13]

I’m having an extra bad day today hubby snd both sons have practically said pullYourself together!!! Hubby gone to bed at 7pm because he has had enough. He is so lovely really. No one knows what it’s like unless they have PMR. You’d think we wanted to feel this bad😢

[PMRpro Ambassador in reply to Joanbill13]

The question has to be WHY are you feeling so bad?

[cycli in reply to PMRpro]

probably doesn't know just is. same for me some days. I try to remember how I was before this and to be honest I could have done better so I'm grateful for the chance to try and improve. Unfortunately that is harder than just wanting to make it so. So much time for reflection and a new understanding of myself leaves me with a lot of remedial work to do. It's work in proigress.

[Joanbill13 in reply to cycli]

Exactly! Thanks for your comment

[cycli in reply to Joanbill13]

try and be gentle on yourself because it's for certain no one else will.

[Joanbill13 in reply to PMRpro]

Just fed up not feeling “well” I think. This continuing hot weather is not helping especially with light headiness. It is so humid I just feel awful outside. I love to garden which my main escape. This new steroid budesonide seems to be depressing too.

[Amber1414]

I try to find professional stories online to share with them for starters. My husband passed last year from covid , it'll be a year in 18 days. Now the problem is my 4 adult daughters. They think because I have pills for BP, Restless Leg, cholesterol, pain, depression/anxiety, vitamins, etc. that I am taking so many drugs they can't trust me with my grandchildren! Nothing has increased in literally decades, some have decreased. The Pred makes me grumpy, especially if I have to go back up to 20 mg for awhile. I have had Covid 3 times and am now so forgetful which makes them angry, as if I do it on purpose! I just don't confide in anyone or share with anyone now which isn't fair to me but I have no choice. Glad you are here but don't want to unload too much here either!

[cycli in reply to Amber1414]

I think that's the reason we are here as well as sharing problems. You need a foil. Bottling it up doesn't help.

[SheffieldJane in reply to Amber1414]

It can be worse to have the expectation of childcare on you, knowing that you will really pay for it physically and emotionally. Not to be trusted though must really hurt. That should be your call. Everything you are doing is working towards your health and recovery. Honestly girls can be mean sometimes!!! Of course you’re grieving and that magnifies everything. You can unload here, it is all relevant and it helps members, in particular, those who don’t post but read every day.

[cycli]

It was tongue in cheek just like PMRpro's comment. There are people who don't understand how we feel and we all have a tendency to blow up when on these drugs. My father was the same and I never understood what was making him that way until now. Too late and I had no tolerance as a child. partners and husbands and wives who don't appear to help and complain at our being lazy will always come in for stick.

[PMRCanada]

Some partners don’t understand or accept our illnesses and medication side effects. Being thrust in the role of carer (to one extent or the other), I’m guessing can be scary and intimidating. Some folks just don’t like change…even if it’s from health issues.

In my sphere of people, my (former) best friend was the worst and I ended our friendship altogether as her response was causing me stress as I could no longer be who I was around her. She could not meet me where I was at. My hubby is helpful and kind for the most part, but does at times pressure me to be more active (with him), in part because I think he misses our past connection as partners enjoying shared activities. My open and honest sharing of pain, stiffness, taper frustrations, etc has impacted other intimate aspects of our relationship as he questions how I’m feeling on an ongoing basis.

We are dealing with the loss of our former lives before chronic illness…so are they. And let’s not forget the “invisible” aspect of our conditions that can make it difficult for others to remember (or acknowledge) that we are “sick”.

I tend to go off by myself if I’m feeling defensive, moody, due to pain, or at times, just plain being fed up with having a chronic illness. That saves hurt feelings and he is aware of this strategy.

I feel for you (and them), as you grapple with this unpleasant part of having an autoimmune disease.

[Joanbill13 in reply to PMRCanada]

That all sounds like me

[Carriemetz in reply to PMRCanada]

Well said.

[cycli]

comes with the territory. same as you but it's not a competition I want to be in. Watched my wife giving birth to our daughter. Never made a sound but I saw her eyes roll and only the whites showing. When she emerged my daughter pushed herself up and actually looked around at everyone and fixed me with a stare. It was quite surreal.