Emerging from the darkness

Like most on this forum pre PMR I led an extremely active life, competing in agility competitions and training 2/3 times a week with my two dogs. I knew lots of people, nothing about their home lives, but their dogs names the grades etc.

I am trying other fun things to do with my dogs therefore meeting up with past doggie acquaintances. Here's the thing, I weigh at least half a stone more, I've had my hair cut short to try to suit the hampster look, I walk with a stiff slow gait and even my personality is subdued as I try to string a sentence together with out sounding as if I'm in the early stages of dementia. At first on meeting with people I hadn't seen for 7 months I had this overwhelming desire to explain myself and guess what, not the least bit interested. It was either the - oh my cousin had that- put down or - glad to see you're well now - .

I did explain to my trainer though as to why I couldn't run.

Last night we had a fun timed competition with 19 obstacles. You've guessed it, I forgot myself and ran it in 45 seconds, yes I felt slightly nauseous after and very out of breath, but noticed my trainer looking quissically at me, reading her mind, she was thinking this woman is making a fuss!!!! Bit like Manics post yesterday does it seem to some we are swinging the lead? Another saying for you.

[DorsetLady PMRGCAuk volunteer]

No, you’re not swinging the lead. Sometimes you can just do things, but you may well suffer for it afterwards (hope not!) - but usually only you see that!

It was every thus I’m afraid! Enjoy what you can, and &*£* to the doubters. 🤨😏

[PMRpro Ambassador]

Ah yes - but what state are you in today?

[Hidden in reply to PMRpro]

In bed atm!!!!!

[yogabonnie]

So glad you ran! yea! I love watching agility dogs. What a joy. I gained a stone (love that. we don't use it. ) actually a stone + a few more pounds and then the doc said i was nearing diabetes. So I went on really strict green smoothie plus salad regime and have LOST it again in about 3 months. and actually feel more like myself! Hope you are feeling better soon. This prednisone is the pits. what dose of prednisone are you on?? and for how long? I'm at 8 and started at 15 Nov '17

[Hidden in reply to yogabonnie]

I'm down to 13.5 from 20mgs diagnosed 20th May 2018. Rhuemy wants me on 10 by the time he sees me at the end of this month. Not sure I can make that as have been feeling extra achy with a reduction of 1.5 this week. Though it could be the return of the cold weather! Already on salad etc, probably it's the wine that's my undoing!!

[PMRpro Ambassador in reply to Hidden]

He's crackers...

[yogabonnie]

He IS crackers. You are dropping so fast! no wonder you have some aches. Try and slow it down and him too!!!!! good luck!

[BonnyQuine]

I have GCA (Nov 2016) but identify with the 'stiff, slow gait'. Still find that every time I have a better spell (like last week), I pay for it. (This week has been awful). Am usually quite accepting, but at the moment so tired of being tired all the time. Couldn't run to save my life!

And yes - it's somehow infuriating that people are always saying, "Oh but you look so well". Guess they do sometimes think we're 'swinging the lead'. And basically they're not that interested - after all, how interested are you in them? Have long given up trying to explain myself. How much does it matter? Just try to keep smiling, and don't get pressured into doing anything you aren't comfortable with.

The quality we need most is patience.

[Hidden in reply to BonnyQuine]

I live in a small village, mostly my neighbours are a similar age to me, broken hips, illnesses, replacement parts saw me going to their homes to check if they wanted anything from the supermarket or collecting their newspaper from the shop, heck I walked someone's dog for them for 4 years so you can't exactly say I didn't show an interest in other people's problems. Only one person called on me when I was really ill she was an aquantance, a retired nurse who new all about my problem. I've told my husband I don't want a funeral when I die, my children didn't even take the 21/2 hour journey by train to see how we were, my husband was struggling, if they can't bother when I'm alive then not bother at all when I'm dead, a paper bag for me and straight down the shute into the furnace.

Oh dear was that a rant. (Would have used apostrophes if I'd got any, no pound sign either)

[BonnyQuine in reply to Hidden]

No problem - ranting helps to let off steam. Isn't it a shame we can't choose our neighbours? Mine aren't very forthcoming either. Used to have a super one next door, and did a lot for her, but she died a couple of years ago. The new people are v 'standoffish', and definitely not interested in me.

My kids all live great distances away, and all work v long hours, so I don't see them v often either. OH does his best, but I think you might describe him as struggling, too.

No furnace for me though! Prefer to be dug up in a few hundred years, and give the archeologists a few clues about who was here! No rush - want to hang about and see what happens next - Trump, Brexit, climate change, etc, etc. Don't mind being an observer - we live in interesting times. . .

All the best.

PS: I'm using a PC, but on my 'smartphone' (which I hardly ever look at) most of the punctuation marks, symbols etc are on the next page to the alphabet keyboard. Click on the '123' icon at the bottom of the screen, and it should 'roll over' to where the numbers and symbols are, then use the 'back button' to return to the alphabet. Hope that makes sense - I'm not v tech savvy. Best of luck.

[HeronNS in reply to Hidden]

It is a different world. When my friends and I were young in a small town we would visit the old ladies of our acquaintance and they would give us tea. I kept in touch with many of these women and would send a Christmas card with a hanky or something in it every year until one by one they passed away. When we moved to our house we shovelled the driveway and front steps of the old couple next door, and when the wife died we invited the old man over for a meal and tried to be neighbourly. He was, I think, younger then than my husband is now. I never did any of those things because I wanted a reward, but there was a sort of expectation that this is the way the world was, and when I was old then there would be younger people similarly helping me, even if it was just through the occasional unexpected visit from an eleven year old expecting tea and cookies! But not at all. It's not in their vocabulary.

[Hidden in reply to HeronNS]

All I wanted was someone to talk to for half an hour, I was so isolated, the people around me had experienced illness and vulnability themselves, I suppose it is because I have a husband they think I don't need anyone else.

[HeronNS in reply to Hidden]

I know exactly what you mean. People do mean well, I think, but time passes and then they get embarrassed, probably.

[Angiejnz in reply to Hidden]

We treat people as we would like them to treat us but unfortunately I seem to be training 'takers'. I love being a giver but do get upset when it's not reciprocated when I need help. I'm not good at asking either but I'm not going to change as the world needs us pay it forwards people to balance out the lost ones

[Hidden in reply to Angiejnz]

Probably you are seen as someone strong and able perhaps that's how I'm viewed too. My neighbour broke her hip last month, I went to see her and she said how nice our neighbours are as so many had called round then to cap it all her son made a surprise visit from New Zealand!!!! She was a first responder for years so she deserves to be patted and hugged.

[Angiejnz in reply to Hidden]

You can get gobsmacked sometimes!!! So long as we keep waking up in the morning, we're winning 🤣

[PMRCanada]

When I have good days, those around me get the best of me. Bad days are spent indoors and on my own if moods are swinging (this is an agreement I made with my husband shortly after diagnosis of PMR). We struggled initially as he was learning to support me, but we were newly married so a learning curve.

I’m fortunate to be able to travel to my daughters place about an hour away and stay overnight. She is supportive, listens and is a nutritionist so her knowledge is helpful. I also get support from my best friend and a therapist as well. I think it’s important to utilize all of our supports so we don’t burn one of them out, and no one support person can be interested all the time,

Even with all of my supports I am very much missing a PMR/GCA support group here in Ontario, Canada. All of you on this forum are wonderful, but I still would like to attend weekly or monthly meetings with those who struggle with these conditions. It would help with feelings of isolation, and promote healing.

Till then I’ll continue to check in here and worry not about what others think or believe about me and the fallout of PMR.

[Hidden in reply to PMRCanada]

I don't think there is a support group local to me, but I attend a weekly community choir, most of us have some sort of problem or other but it's washed away with our singing and laughing, perhaps something like that will help you?

[karools16]

What clusters of fruit? are growing there? Very colourful pic!

[Hidden in reply to karools16]

It's a Rowan tree, soon the fruit will be completely stripped by blackbirds.

[Hidden]

Hi Chris

Glad to hear you are getting back to dog training, l expect in the excitement you got carried away & as a result you are feeling it today but you’ll know for next time!

Other people have no concept of what we are going through “But you look so well!” Ahhhh!!!

The chubby, pink, rosy cheeks, make us all look so ‘well’

At least we have the opportunity on here to explain how we’re feeling & get genuine support!

Enjoy your dogs 🐕

Best Wishes

Mrs N 💅🏼

[Hidden in reply to Hidden]

Thanks, there is an agiliity fun day coming up which they say I must attend, I will but I just know I'll get carried away. It's all day so not sure how I'll cope without a sleep!

[Hidden in reply to Hidden]

If possible pace yourself & take a rest if/when you can. It’s good to do things again but on your terms.

Have a good weekend x

[Hidden]

Chris you have that competitive spirit & the brain over rides the body. Great at the time but!!!! Usually it's worth it but others think you can carry on doing it! When I was in hospital some the staff said how young I looked for my age! A steroidal face like a babies bum more like! Anyway you carry on the good work your own way. Nice photo. Are they Helenium's under the Rowan? ATB

[Hidden in reply to Hidden]

Yes my colour matching worked for a change. Just picking runner beans at last, there's going to be a bumper crop.🤗