Understanding PMR

[JeanC3]

Hi All, new to this site but have had PMR for 2 years. My problem is that people don't understand because I look 'OKish' there is little understanding that I simply cannot do what I used to do! and my movements can be akward/painful which I'm questioned about. It's a struggle to keep on top of housework let alone gardening or DIY which I've always done in the past. If I don't 'pace myself' I pay for it in the following days which is what others don't see so they think all is well cause you rally when people are around. Does anyone else experience the lack of understanding?

[Hidden]

Hi JeanC3, welcome. Yes it is a common experience if this forum is anything to go by. My family is 50/50. Some know and understand the difficulties but others just have no understanding what fatigue and pain we experience. I have to have a rest day between activities and often have an afternoon of rest. I managed to grow some veggies last year for the first time.... Mainly by adjusting activities.. I gave info to everyone but only certain people understood the implications. I have done almost 4yrs now and am lucky that I live alone so just do what I want 95% of the time. Keep plugging away, you are doing the right things by pacing etc.

[JeanC3 in reply to Hidden]

Thank you, it helps to know that I,m not alone in this. Onwards and upwards!

[Constance13 in reply to JeanC3]

Welcome! You're never alone on here as we have fellow PMR sufferers all over the world - someone is "out there" to answer your questions/commiserate/listen - day and night.

We're a happy crowd living with a debilitating illness, but it isn't life threatening so we try to keep an upper lip.

[PMRpro Ambassador]

Hi and welcome!

Is the Pope a Catholic???????? Oh yes - and even my husband doesn't get it after over 15 years!

[Constance13 in reply to PMRpro]

Your poor husband does go through it on here!😂

[Constance13 in reply to Constance13]

Please fill in your profile so we know who you are, where you live, doses of pred, etc etc.

[HeronNS in reply to Constance13]

Sometimes they've earned their place!

[Longtimer in reply to PMRpro]

Neither does mine!!😱

[HeronNS]

Oh yes, I am forever having to mention to people that I really haven't got the stamina I used to have. And it's not just physical activity, it's also socializing, which I find very tiring although necessary for my mental wellbeing. I find the weekly grocery shopping ridiculously exhausting, and don't get me started on vacuuming! Some things simply have to slide, and get done when you feel up to it, not according to a former more ideal schedule. My method, such as it is, is to balance each period of activity (yes, even a pleasant walk or coffee with friends or dinner with the family) with a similar period of rest (tv, computer, reading, sleeping, or an activity you find relaxing - in my world that is things like playing the piano, jigsaw puzzles, sketching a picture of one of my cats, but definitely not hanging laundry or dusting ).

[piglette]

It is not people just with PMR who find this, but people with life threatening diseases and even terminal ones. Most people are not really interested in how other people feel and are limited in their sympathy.

[Louisa1840]

Hello JeanC3,

I don't think anyone understands it unless they have been through it themselves (which you wouldn't wish on anyone). We look so WELL with our blooming skin and chubby cheeks. People are forever telling me how WELL I look!

Part of the PMR journey is acceptance and I think we just have to accept that people don't understand. I am fortunate in that I have a brother in Wales with PMR (I live in Tasmania) and I can ring him every few weeks, have a good laugh and KNOW that he understands. To get that same understanding from others is crying in the wind I am afraid. That is the blessing of this forum we all understand!

[PMRpro Ambassador in reply to Louisa1840]

The answer to that is "It isn't my face that is sick ..."

Or alternatively "You don't LOOK stupid ..."

There has been much discussion on this topic in the past

[Hidden in reply to PMRpro]

And if you smile at them, which is my natural response, why you must be cured.

[Slowdown]

As a way of socialising and doing something useful I joined the 'Scrub-bashers' group of the local archaeology society, which means we go once a week to keep the ancient monuments tidy. I like using the strimmer and usually I'm ok for an hour, other times I chop at brambles or remove ivy etc From the start I gave a very brief outline of what my 'condition' was but concentrated on the steroid effect, i.e. talking at a terrific rate one minute and then hitting the wall of Deathly Fatigue the next. My hair was long, a bit wavy, when I joined, but it did the moulting thing so I cut it and it then went very curly, They are all intrigued and on the lookout for the next manifestation! but they do understand the waxing and waning of my energy and that's all I need in this context.

To casual friends I smile and just say 'It's the steroids' in reply to 'You look so WELL' at which they will probably back away. Family: I was honest from the beginning (nearly 5 years ago), one daughter completely gets it, the rest ask every now and then how I am and as long as I'm walking and talking they move on.. as they should. I know they'll help if really required.

[bunnymom]

I think it's very frightening to grown children to see their parents unwell. My kids understand to a point but seldom ask how I'm doing. I think it's tmi for them. It's hard to see a parent decline.

[HeronNS in reply to bunnymom]

They can't be protected, and really they shouldn't be. Decline and death is inevitable and comes to us all, and I think our grown children need to be given the opportunity to develop their compassion through dealing with a parent's decline. I'd rather my children paid a little attention now while I'm still mostly with it, that they take the time now to help me out while I can appreciate it, rather than waiting while I fail and having nothing but end-stage horror for us all.

I do my best by asking for help all the time. I don't always get it (they are busy) but they are cheerful enough when they do pitch in. Their Dad and I get a little gentle teasing because of our moderate incompetence.

[Hidden in reply to HeronNS]

I agree with the sentiments. I used to speak to my mum several times a week, but when I worked I lived 200miles plus from my parents. When mum dx with cancer I spent most weekends travelling backwards and forwards and was able to totally re-engage with her before she died 2 years later.. I would have hated to miss that time, I did a big family tree and photographed all the houses her parents and gparents lived in. I was in my early 40s, my mum72. Similarly, I spent 2 years staying with my dad every 5 weeks for a week when he was in decline and all the issues we had lived with were sorted before he died. Its inevitable we all decline and you have to get used to the idea you are next in line when your parents go.

[birdseed]

I have had PMR for the last 4 years. Most people do not comprehend the debilitating effects it has on us just for that reason ...that for the most part we look fine on the outside. I operate at a much lower activity level than I use to and for the most part I’m ok with that. I know that if I have a real energy spurt and overdue I’ll pay for it. Saturday I spent the day early Spring cleaning so yesterday I spent all day in my pajamas and I was just fine with that! Who I was and who I am now are two different people but I’m learning to accept the new me and educate the people around me who I love.

[Paperroses]

Just thinking that very thing this week .Good on the outside but ouch on the inside. I move slow , pace myself and get frustrated because I cant do what I used to do. Picking up a cup of coffee in the morning is hard sometimes. Everything feels heavy. The things I did on a single day I now have to spread out over the week. I try to act normal too like not show how hard it is to stand up after sitting. I don't say much and no one asks. One day at a time.