PMRGCAuk
7,391 members12,133 posts

MY DAUGHTER SAW THE LIGHT

My daughter picked me up this morning for a brief shopping trip ( I had coffee and read the paper while I waited) I was dressed and had some makeup on but had not combed my hair. Luckily it went curly when I was about 50.

Getting in her big 4 wheel drive I could barely close the door because of its weight. Same thing when we arrived home I couldn't push it open because of shoulder and arm pain.

Oh God Mum, "I had no idea how bad you are" " I tried to tell you "I snivelled, No, I didn't really snivel. Felt pretty happy actually. " You had better get to the Doctor asap

I know, I am.

So to sum up today was a good day. Coffee in my favourite cafe, half heartedly vacuumed my living room but didn't make the bed. My husband is away for three days so enjoying doing nothing much.

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I hate those enormous tractor-like things! Being small I have to climb in and getting out is far from elegant. And as for opening or closing the door to get past the bit it stops at on the hinges ... !!!! And one of the selling points has been they are easier for seniors because you don't have to get up out of them!

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The new type taxis have become an embarrassment to me. Grumpy taxi drivers have to get out and close those awful sliding, swinging doors. I just haven't got the heft. I hate fat bottomed cars for many reasons. Who thought they were a good idea on congested roads?

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Ah yes - the VW campervan sliding doors that have been cursed on campsites since time immemorial! Especially when someone had to get up in the middle of the night to the loo and it wouldn't shut first time...

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We had one of those old VW campervans with a sliding door! I can still hear the sound of the door... We must have been very annoying as there were six of us camping in it with four small children who had no strength to drag the door closed, but loved to try! My mum always said it was like camping in the bathroom and she was delighted when my dad sold it.

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We gave up when Nat was about 18 months - couldn't keep her caged to pack everything away! But then did caravan, went back to just tent, back to VW, back to caravan...

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Sons are great but my daughter is the one who thinks. Her new "old" convertible is so easy to get in and out. At the moment in a container with a Ferrari on it's way from Australia 🇦🇺 Looking forward to driving through North Derbyshire with the rain,hail and snow in my face. 😎

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That conjures up a very funny picture.

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There is a blanket bought for picnics, I may be wearing it.😂

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Might be an idea.

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When I came home from work last night, I found a present from my dear one: A Roomba vacuum cleaner running around the house cleaning the floors all by itself. It does a fairly good job on both the carpets and the bare floors, gets under the chairs, tables and couches, and I can see it will keep things somewhat under control until we get out the big machine for a deep clean every couple of weeks. It even fits under the toekick under the kitchen cabinets, and sweeps up the crumbs.

Now if it would vacuum the stairs and dust the furniture...

Jeezaloo, it's not perfect, but it's painless!

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Sounds like a great idea. I have qualified for council help. 1hr every two weeks. Better than nothing I guess.

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Well, we're Americans, so we're on our own. We have to buy our way through, and have to keep working so we can afford insurance, prescriptions, co-pays for doctor visits and lab tests...

We're lucky in that we can, at least so far. That may change rather abruptly if this political administration gets their way. For us, retirement will only happen when we just can't work anymore. And then who knows...

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I know it can be tough for Americans. My cousin had a sick daughter and they lost their home. I go to a bulk billing clinic and all Doctors visits are free as are blood test and xrays. I pay private insurance for hospital stays but public hospitals are free. I had a knee replaceme t last year and was out of pocket $3300 that was for the surgeon hospital stay and 2 weeks rehab was free. Then 6 weeks outpatient rehab. We are very lucky.

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Makes me realise how fortunate we are in the UK. As well as pmr, I have osteo arthritis, and in the last 3 years have had L and R total hip replacements and back surgery. Excellent inpatient treatment and community visits from physios on coming home. Then ongoing out patient physio at local hospital. So I am really grateful,

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Yes, they booted me out of my job when I turned 71 😖

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Sounds great, wonder if my cat would chase it round the room, or sit on it for a ride?

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I could see a cat doing either, or, running and hiding till the robot docked itself. One I owned years ago would probably give it a Golden Shower.

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:-) I NEVER thought I would get a robot vac ... but I did. I saw one here in the USA called iLife that was within my budget and cheaper than many of them so decided to give it a try! OMGosh, it is just the best thing I have ever done (well sort of). I have had it 4 months now and just today I gave it the big test by using my upright and there was hardly anything in the bin thingy. It's wonderful.

Vacuuming had become impossible for me because of the pain, especially in my left hip area. And it really, really upset me seeing dust on my floors so my little robot guy is a Godsend.

Also, today when I vacuumed it hurt a bit but not too much and that is because of the prednisone I am on.

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It does do a good job on the floors, but I still have t do the stairs and the walls and the ceilings. 100+ year old homes seem to breed dust...and cobwebs, no matter how clean you keep the rest of the place...

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I'm all on one level, fortunately. Yes, dust is a nemesis!

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Hmmm - maybe that's what I need for xmas...

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PRMpro I had seen one on sale for $149.00 and was shocked they were even available at that price! I had always thought robot vacs were out of my league. When I checked out the reviews for that one, which were pretty good btw, I looked at the higher priced model's and opted for one that was $249.

No regrets here :-)

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What sort?

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I just looked up iLife and I must say some of the models are tempting. My cats would love one!

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Even if all it does is pick up the crumbs from OH's daily bread I'd consider it a bonus! Hints will be dropped!!!!!!

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As hubby has had to vacuum lately because of my bad back I'm thinking now would be a good time to drop hints here, too! We could give one to each other for Christmas!

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I ended up getting the A6. The amazing thing to me is that it totally gets in corners even though it is round, lol! It has a function where it just goes around the walls and it keeps everything so clean. I put it through its paces too. My hair is kind of long and I didn't even attempt to clean it up before I first started using the little guy. I am very careful with maintenance and am taking very good care of my little vac!

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The brand is iLife. I got mine from Amazon.

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I am on my second. He is not perfect but certainly helps, I go out while he does upstairs and when I come back he is recharging. My friend who has Lupus has one for downstairs as well and says she couldn’t manage without them.

As you say, if only they could do the stairs.

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The Hausmeister (concierge) does the stairs - none in the appartment!

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I have to admit I have a cleaner as well and I don't care. I am fortunate to be able to afford it and she needs the money.

Off to pack now for my cruise to Florida, more glasses raised to you in Boston, New York, Bermuda and the Bahamas. Took my blood pressure this morning and despite the drinking it was 132/60

I think I have clinically proved that champagne does more good than worrying.

Have a good day

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I had one in Scotland, spent so long working on the house in Durham it didn't seem worth it. I had one here - but she's changed track after my delightful neighbour just sacked her by switching the shop to the nephew and then they said they couldn't afford her. As a foreigner it is not easy to find one you can rely on. Do miss having one though.

I don't care - a prosecco does you good!

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I think only us that have PMR know how much we can't do! We try to act normal, but we are not! I've finally reached 6mg and doing ok, except by supper time, I'm tired to say the least. Started on 15, five years ago, up and down the last three like a yo yo! At 68 I want to feel somewhat good, now the last 6 months dealing with lower back pain, even after several trips to the chiropractor, still tail bone hurts and keeps me from walking very far! At least I've found out that we can only do a little at a time, and I'm just fine with that! I'm thankful we have each other! Thank you from Michigan USA

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There doesn’t seem to be any support groups in the USA , but lots of pmr/gca

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I think you can get all the support you need Maryanne from this group, on line. They are the best, and know a lot😎

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But nothing like a good grumblefest in person. About a year ago I got together with a former coworker with fibro and the two of us had a great time comparing symptoms. Couldn't do that with many people!

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I wonder if part of the problem in USA and Canada is geography?

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It could well be - it probably makes it harder to identify others in the same boat and get in contact unless you are in a big city.

But the first solely for PMRGCA forum was started by the NE of England group simply BECAUSE a lady in France felt "cut off". There was already the patient.info forum but it seems less "dedicated" somehow and is very tightly moderated - which isn't bad but it sometimes makes discussions we have here impossible. She had had experience of setting up a forum so offered to do one for us.

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I've met two people with PMR, and heard of a third. That's not very many! The two who appeared on this forum who live in my province were evidently not interested in following through, probably very private people, as I am, wary of connecting with strangers for whatever reason, and only one of them lives/d in my community. There is a thing called "Meetups" and I searched through that for local possibilities, but no luck. Sometimes you just need right time, right place, right people for something to start. The Toy Library my friends and I set up when our children were little happened quite spontaneously. I said, there should be a toy library, my friend said there was one in the city where she used to live and a third said why don't we start one. And almost overnight we had a core group of about eight people, soon more, and the toy library was a going concern within months. It lasted from 1981 until 9/11 when insurance rates went sky high and the people then running it couldn't afford to keep it going. So I look on that, and a couple of other things I seem to have set in motion through a chance remark, and wonder why PMR doesn't magically do the same thing! But starting a toy library had the benefit of a group of stay at home mothers who were of like mind and lived near each other and had already met each other either because we were neighbours anyway or we were going to the same play groups, etc. Where does the PMR crowd hang out, and how would one recognize them?

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You do have to look a bit - perhaps a notice in the doctors offices asking if anyone fancies meeting for coffee on neutral ground. One group started like that - a lady reserved a table and put up the notice and waited to see if anyone turned up. They did.

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I haven't the courage, or I would. There's no notice board in the doctor's office, like not a public board everyone would see as they came and went. I saw an acquaintance of mine across a parking lot one day and observed how she was walking and I should have run over and struck up a conversation. I think that was a missed opportunity but I'll be more alert if it happens again. That being said, over the past 30 months or so I've become much more reconciled to my lot....

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On another forum this even someone said she wanted to cry - she was desperate for some chutney but couldn't open the jar. I told her to get out to the gate - something she thought she couldn't do - and the Amazon delivery driver obliged!!!

The first step is the hardest.

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I could do that, but setting up a table in a public space is beyond me. 😕

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You don't "set up a table" - you reserve a table in a cafe or somewhere and meet like that. You could take a friend with you if you can't face sitting there on your own.

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Is there a support group in W Sussex?

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pmr-gca-northeast.org.uk/

Click on the map to get the list of groups and contacts. Brighton and Worthing spring to mind. Depending on where you are - Chertsey would also be a possibility????

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Yes, there is, meets monthly in Worthing. Contact pmrgcasouthcoast@btinternet.com

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Thanks

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