pmr sufferer’s partners

[bBarnabus]

How do people’ partners cope with this depressing, debilitating condition? What help is there for them? Any discussion would be much appreciated

[DorsetLady PMRGCAuk volunteer]

I always send my information post to new members and suggest they keep it and show to family members so they can understand a little about their illness(es).

Also get them to have a look at the charities website to get a better understanding., and maybe attend a local group meeting, then they will hear other patients and their partners experience (partners are always welcomed).

But sometimes, the only people who really understand are fellow patients.

[PMRpro Ambassador]

Don't think mine bothered his head about it!! He was a healthcare professional at consultant level but knew next to nothing about PMR.

There is a video which the NE of England group funded and produced as a DVD and which is now on YouTube I think - but all about it in this post:

healthunlocked.com/pmrgcauk...

It is short enough to get family and friend to have a look at, especially as it comes in 3 bites. There is also Kate Gilbert's book, available as an e-book from Amazon but that is a proper book read and might need a bit of nagging.

amazon.com/Polymyalgia-Rheu...

But the only people who really "get" it are other people who have a similar chronic rheumatological condition.

[GOOD_GRIEF]

Beyond understanding the condition and treatment is the necessity to understand your partner's physical limitations regarding what they may not be able to do, and that can vary from day to day.

Everyone is different and suffers differently. The best thing you can do is to ask what you can do to be helpful, and keep an understanding heart.

[Koalajane]

my husband is understanding but to be honest I carry on much the same as I did before PMR reared it’s ugly head. The only thing different is I go to bed around 8.15 pm

[PMRpro Ambassador in reply to Koalajane]

I did that pre-pred! With pred I managed to last to 10pm. And NOW - positive night owl, I stay up to 11pm!

[herdysheep in reply to Koalajane]

It is wonderful to hear of someone else going to bed in the 8-9.00pm slot!

[PMR2011 in reply to Koalajane]

Which is why we need to learn our limits and to say “no”. I became much better at it and now that I’m feeling much better, I am still able to say no and am grateful I learned it!

[Charlie1boy]

My wife is an absolute star in terms of her support. She is an ex PE teacher, so knows quite a bit about the body’s muscles etc. She’s especially good at reminding me when I need to rest!!

Yes, if you can get your partner to have a read of Kate Gilbert’s book, then that goes a long way to getting to understand the condition.

Cheers

Paddy

[Windy183]

Please may I jump on here and make a plea for those of us who don’t have partners and live alone. It’s very difficult for anyone ‘outside’ to be fully appreciative of the symptoms and how it affects you if they don’t see it day in, day out. I realise sometimes a partner who isn’t supportive might actually be worse but it’s very lonely if you are single and this group is a real daily help so Thank You all.

[spacevoyager in reply to Windy183]

I'm with you Windy! Being single means we are our own support. I pay attention to everything. I communicate very well with my doctor and make demands on what I want re: testing, dosing, consultations with other specialists. I have a few friends who kind of understand, but not really. I get help here when I need it. The good thing is...I can go to bed whenever I want and nobody cares.

[PMRpro Ambassador in reply to Windy183]

To be honest - having lived with both, it is easier living on my own. If I don't want to do something - I don't need to. I can keep my own hours and eat what and when I want without having to cook to a timetable.

[PMRCanada]

I have a soft spot for the partners of PMR patients as they too are thrown into a new reality, often suddenly without warning. Transitioning into a new role of support can certainly be challenging (not to diminish the shock and pain that is experienced by us as PMR sufferers).

As partners, becoming a “carer” definitely impacts the relationship dynamics. Unfortunately sometimes the partners’ response to us does more harm than good. Patience and being able to honestly communicate with one another helps. Both parties share the common ground of making adjustments and sometimes re-establishing roles/duties. Throw medication and side effects in the mix and it can make for stressful times.

I always thought a separate group for partners of persons with PMR/GCA would helpful so that they had their own people who would “get it”. This support, I feel, would benefit us all in the long run.

[bBarnabus in reply to PMRCanada]

I think partners being able to communiuwith other partners would be very beneficial. It must feel like your life has been taken away as well as the pmr sufferer’s. So much of how we relate is of a physical nature , walking, gardening doing things together, Tale that away and you can feel bereft, like you have lost your relationship. When you are in constant pain and fatigue it’s always on your mind, finding anything to get excited about to feed into the relationship is an effort and you don’t want to be a moaner so communication can dry up, it might seem like you have lost interest in your partner from their point of view. Also there is the sporadic nature of the disease, one day you are full of beans and the next you are evacuated. It must seem so confusing. And unpredictable

[PMRCanada in reply to bBarnabus]

Exactky….well said!

[eyeBRing in reply to PMRCanada]

my wife tells me to stop and rest but I mostly ignore her and end up over doing things and have a couple of days in extra pain where she gets in sayingI told you so,

[bBarnabus in reply to eyeBRing]

me too. But you can’t give up. Sometimes it feels better to just stay in bed but you have got to keep your body working.

[Sharitone]

My husband is very frustrated, particularly that he has to go for walks on his own, and we can't go on holiday, or at least, there wouldn't be much point. He does most of the shopping and cooking and washing up and I do most of the rest. He feels very hard done by! But he does realise my limits.

When I used to help disable people with their benefit appeals, I often came across people with LT conditions whose partners had given up and pushed off, so I feel I am lucky to have him, moans and all.

But as for your question about what support there is for them, well um......

[PMRpro Ambassador in reply to Sharitone]

Have you not considered a mobility scooter? You don't have to use it all the time but it CAN be the difference between getting out for a "walk" and going on holiday,

[MrsNails in reply to PMRpro]

Before my Angina was stabilised l was admiring Mobility Scooters on holiday (you can hire them on Ships) but now they’ve sorted that for me & it’s just the knees l think l’ll struggle on a bit longer…..

[PMRpro Ambassador in reply to MrsNails]

I have one in the cellar! Himself gave in to encouragement at the END of the summer when we could have enjoyed having one - we got it in late October, just before it got cold. Then he fell in the January and then came Covid. and he was never well enough again I have no idea if the battery will still work - before the spring I will go to the shop and get it sorted out and use it for shopping rather than getting the car out!

[Sharitone in reply to PMRpro]

Yes, I got on well with the one I hired in a Wildlife Park, but I'm always hoping I'll be better next week! Maybe in the Spring.

[PMRpro Ambassador in reply to Sharitone]

You can hire - so arrange a holiday or a trip. And practise at Sainsburys and co ...