A Little light Reading : It is a beautiful, sunny... - PMRGCAuk

PMRGCAuk

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A Little light Reading

92 Replies

It is a beautiful, sunny, but cold day here in Brighton!

So far... I have been to the GP (again), where numerous vials of blood were taken out of my body! I have had a failed attempt at having a 24 hour Blood Pressure Monitor fitted, because of computer problems. (?) I have completed the household chores I'm actually capable of completing, i.e. vacuuming, dusting, removed the bedding and threw it in the washer. "Whew," I'm exhausted already. And now it's time for a little "me" time... and some light reading.

I hope you enjoy your afternoon!!!!! ; )

92 Replies
SnazzyD profile image
SnazzyD

Sounds like a reasonable day’s work for Pred.

Re the b/p monitor. The monitor is programmed, set up and dats downloaded via a computer app. If that fails as they often did when I was doing them, no functioning monitor or data. Worse was when it was set up ok but the data could not be downloaded which meant one sleep deprived patient being told it was all for nothing!

in reply toSnazzyD

Thanks SnazzyD! Apparently the whole office lost their computer system yesterday and they did not reinstall the software for the 24 hour BP monitoring yet. So the next appointment is?

April 24th!!

Seriously??????

I am so glad I didn't get, wear it for 24 hours and then find it couldn't download data!!!!

SheffieldJane profile image
SheffieldJane

Well done for having an extremely productive morning. Please extract any top tips from the above book that we might not already know about and tell us. Gordon puts the fresh sheet on the bottom of the bed because I can’t lift my wonderful mattress, but I can now do everything else about changing sheets. I do not like my bed being out of commission. 😴

I bought a blood pressure kit for around £30.00 and go through phases of monitoring it ( mostly it gathers dust).

I’ve just had a locksmith to change my front door lock which had begun to jam. I fluttered about like an 18th century old maid. That felt like work, so I am reading the Sunday papers.

in reply toSheffieldJane

Will do! HA! We're the opposite! I can get the fitted sheet on the mattress, but cant get the king size duvet in the duvet cover!!!! I end up in there with it!

I have a blood pressure thingy and mine gathers dust too. I think it must be "broken" as well, because lately... it says my pressure is high and I have never had high blood pressure!!! : O

I hate having worker in the house.. I must ask "Would you like a cup of tea?" a thousand times. What's up with that?

PMRpro profile image
PMRproAmbassador in reply to

But now you are on pred - high dose pred. New normal!!!!

If anyone wants the kingsize duvet on the guest bed here - they do it themselves! We have 2 single size ones, one each, no pinching and if you need extra warmth - the other poor sod doesn't have to toast...

in reply toPMRpro

OH YES! I was supposed to look into two singles... I totally forgot!

Mind = spaghetti sieve

Soraya_PMR profile image
Soraya_PMR in reply to

There’s a theme emerging.... Hidden just said her brain had been hoovered through a colander.

I think a tea strainer might be big enough for me.

SheffieldJane profile image
SheffieldJane in reply to

This chap wanted coffee which we hardly drink and SUGAR. I found a bit of ancient caster sugar. 😳

Melissa, that reading maybe correct. I have never had raised blood pressure, 3 pregnancies etc. I do now.

in reply toSheffieldJane

😊 I cannot tell a lie.... I know the blood pressure thingy is not broken! It's me. It's my body, ever rebelling!

I always offer tea and yes I had a guy once say, "oh, yes may I have coffee please?" And I had to say no! 😆

PMRpro profile image
PMRproAmbassador in reply to

Coffee? What's coffee? The cousins who were skiing left a small jar - it'll be untouched in a year. Maybe I should put it in the freezer for the next guest that wants some. If I want a coffee I go to the bar in the village...

SheffieldJane profile image
SheffieldJane in reply to

You will have to get used to Yorkshire men when you move to York. They boss you about in your own home and ask you stupid questions like where do you turn the water off.

in reply toSheffieldJane

Ha! They (he) can try! 😏

Rimmy profile image
Rimmy in reply toSheffieldJane

LOVE this bit about 'ancient' sugar ... Us too !!!

Hollyseden profile image
Hollyseden

Yes that's enough work for one day. Do you also find that some, if not every time, you shower and wash and dry your hair, you need a rest to recover?? One of those yoga positions springs to mind. 😊

in reply toHollyseden

Hahahahaha. Yes!

Those yoga poses were hysterical!!! I loved them all!

SheffieldJane profile image
SheffieldJane in reply toHollyseden

I definitely do. I keep nodding off with wet hair, not good, not a good look.

Hollyseden profile image
Hollyseden in reply toSheffieldJane

Almost as annoying as drying your hair..... eventually 😓 then sitting down to recover and squashing your hair flat again because you doze off in the chair 😏

in reply toHollyseden

Hehehehehehehehe

Sandradsn profile image
Sandradsn

Well done on doing your morning jobs.I went for a walk as it's such a lovely day.I came back hot, bothered and exhausted.I'm now on my bed in the sunshine getting to grips with 'teach myself crochet'.Who would think crocheting a granny square could be so hard!!

in reply toSandradsn

Yes, I had a lovely walk to the GP's and back, through a little park called Saint An's Well Garden... I'm thinking of attempting knitting!

Rimmy profile image
Rimmy in reply to

DO 'attempt knitting' Melissa - you might actually ENJOY it !!! - it truly isn't a sign of 'defeat' - I used to do it even when I was 'well' (then again maybe that's an admittance) .

R

X

I have cleaned my car out. Between my spare scarves and hats and the dogs bed, towel and toys I filled a big bag. I had to remove the protective seat covers. Was at the garage so used their vacuum. Barely got the back seat done and my coins ran out. I piled everything in the boot and went to the car wash with the intention of getting them to express vacuum. I was so shattered I could barely speak to ask for a car wash. I came home for a rest but my dog had other ideas and as I opened the front door she ran down the street on our usual route and refused to come back. She has become less biddable in past year. I had to follow her and after she had done what she needed to do she happily strolled at my side all the way home. She hasn't been on a long walk for a few days so I can't blame her for giving me the finger. Hey ho.

I have felt like a pin cushion the past couple of years. I seem to be having blood drawn every couple of weeks.

I hope everyone is well rested. I am going for a nap!!

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

Maybe your pup thinks that playtime might brighten your mood or make you feel better. The Lucky Dog seems to think so, especially when it snows and I've been welded to the couch for hours and hours nursing my pre- and post- storm aches and pains.

in reply toGOOD_GRIEF

She knows I give in and just follow her on that route. You know what they are like...do some thing once and they expect it all the time. On walks in the countryside she is well trained and I only have to whistle but she wanted grass today so was going to it lol

Insight329 profile image
Insight329 in reply to

I love to hear pet stories. I have a cat, Moon. I call her Moonshine, MoonyTunes, MoonRiver, Moonster, etc. depending on, uhh..who knows? I guess whatever comes out of my mouth at the time. She's an indoor only cat. When I open the basement door, she comes out of nowhere and dashes downstairs. She doesn't like to come back up, but on those rare occasions that she follows me back up the stairs, she goes first and then when at the top step, sprawls on her back so to get her belly rubbed. Of course, I can't get by her without doing it. She also likes to sleep ON me (In bed). Not beside me, but on me. When I need to rollover, etc., I'll start jiggling and she's not budging. It's like she's riding a surfboard and I'm the wave. I so love that little stinker.

in reply toInsight329

😂😂😂

I don't think I could live without an animal of some kind. Some friends of friends dog unexpectedly died and the couple meet outside the house because they have to go to the empty house together. It's still very raw. They bring a house to.life.

Insight329 profile image
Insight329 in reply to

Losing a pet is so hard. They are furry family members.

I feel the same way, Poopadoop. I can't imagine not having an animal in the home. I love dogs, but I'm allergic to them. During allergy testing, staff kept saying "ohhh...you have a cat." Imagine their - and my - surprise when I found out I was allergic to dogs -- and not cats. Moon celebrated. All of my symptoms were from feathers -- feather pillows, etc. But I think dogs are sooooo wonderful, too.

My friends laugh at me because I once tried to bring in an opossum. Of course, it was dusk and I thought it was my neighbor's white little poodle that had gotten out. Fortunately, I realized it before I really got upfront and personal with it. But since then, I've even looked forward to when I get a glimpse of it. "There's that little white poodle-opossum." Now I periodically get pictures of opossums posted on my facebook from friends thinkin' they are funny with "Here's a cute little poodle for you." And my favorite meme is that of a bunch of baby possums in a box all of them have their mouth open wanting to be fed. The narratives is "Free kittens. Found them in a barn. I think they are Siamese or some other fancy, foreign breed. They don't meow or purr and they are kinda bitey. Mother must have abandoned them." I laugh every time I see that meme. Good medicine. (Threw that in to be on topic with HealthUnlocked. ha! )

in reply toInsight329

😂😂😂😂

in reply toInsight329

Are you even allergic to poodles? They are crossed with everything these days because of danderlessness.

Insight329 profile image
Insight329 in reply to

Who knows? Most of my friends are 'cat' people. The only time I'm around dogs is when I visit my sister or her kids. They are all chocolate lab people.

in reply toInsight329

All i could think then was. Mmm. Chocolate 👹

in reply to

You so make me laugh!!!!!

in reply toInsight329

Awwwweeeeee. So cute. What kind of dog is it?

in reply to

Poopadoop, I just woke up from a nap and I'm EXHAUSTED from reading your comment!!!!!! Are you nuts? Happy the dog feels better though...

Yes, I used to hate blood tests, but now it's nothing! Piece of cake.

SheffieldJane profile image
SheffieldJane in reply to

Our poor old dog turned out to be deaf when we thought she was blithely ignoring us. She kept running away. She once turned up in a florist shop trailing lavender ribbon and utterly spoiled. She had her name and number on her collar.

in reply toSheffieldJane

😂😂😂

As I was typing I was wondering if she was getting a bit deaf . But she can hear the biscuit box rattle or fridge door open.

PMRpro profile image
PMRproAmbassador in reply to

Like children - who can hear "icecream" at 20 yards even if you have your back to them and mouth it...

in reply toPMRpro

😂😂😂 yep.

SheffieldJane profile image
SheffieldJane in reply to

The smell of food perhaps?

Insight329 profile image
Insight329

Good job! Just doing the bedding had to be difficult. Those weighted blankets are heavy!!!!

in reply toInsight329

YES! Those weighted blankets are HEAVY, aren't they? I sometimes wake up in exactly the same position that I went to sleep in! I think it's because I am literally weighted down by the blanket and can't actually move!

I do sleep like a rock now though... and I sleep through the night! No more 2:00-5:00 creative periods. My monster, "She that shan't be named," seems to have fallen in line with my preferred schedule; sleep from 10:00 to 6:00.

Insight329 profile image
Insight329 in reply to

Yes, they are HEAVY! I only got a twin size (not realizing it when I ordered it). I cannot tell you how many times I have thought of you when trying to move/reposition it and wonder if you struggle with it, too. My sleep has drastically changed, too. I love it. But I think I may need to get something more like yours for summer. I'm afraid mine is going to be too warm. Thanks so much for telling me about them.

in reply to

That's a big improvement sleep wise. I am jealous. I am.just about having 4 hours a night. I have a cracked crown on a tooth that supported a bridge...i only had "baby" teeth in that area. Because it acted as a fulcrum until I could get it sorted the tooth got quite wobbly. We just about rescued it but dentist said it might not survive. I got an abscess and realised the crown had cracked. Of course I can't seem to leave it alone so it's on its last legs. The dentist will want to extract it!!! I am trying to let it settle and see if it firms up but the pain wakes me up I think. It's a good job I don't have dental pliers at 3am or it would be pulled. 😂 you never know if I can leave it alone it might be saved!!😆

in reply to

I know, right! Shhhhhh, because I'm afraid its a fluke! It has been for 2-3 weeks now... Ohhhhh, nothing worst than teethe problems... (OH! Well, expect maybe PMR/GCA!!!!!) Leave it alone!!!!!! ; )

in reply to

Thanks ..needed telling.

Mstiles profile image
Mstiles in reply to

Wow I haven’t slept like that since before PMR/GCA and prednisone. I missed the weighted blanket post...sounds like it really helped you. I’ll have to google it. My sleep has been maybe 4 hours and the then the 2:00 - 5:00 awake, half asleep , getting up for the bathroom, laying there staring into space, experience. Also I miss my dreams....

Hollyseden profile image
Hollyseden in reply toMstiles

Snap to that sleeping pattern! How wrong is it to be resentful of my hubby who can sleep in the chair half the evening then go to bed and sleep all night too? I can't remember last time I slept right through the night. Just like now 😏 the boss (my 3 year old granddaughter) will be here at 8.30 to play games all morning till nursery in the afternoon. Sleep.....why have you forsaken me? 😔😏

in reply toHollyseden

My husband does that... so annoying! And he snores.. I think just to rub it in. ; )

in reply toMstiles

I know!!!! It's a miracle! That is exactly the way I slept for 8-10 weeks after I started Pred, until I got blanket. I'd sleep 10-2 and then up from 2-5. And "YES," I stopped dreaming too!!!!! What is up with that? I was like the BEST dreamer... loved them!

However, (shhhhhhhh) this past week I have had several dreams!!! I cant remember them, but I wake up knowing I have had them... I am sooooo happy!

Weighted Blanket >>>>>>>>

healthunlocked.com/pmrgcauk...

Mstiles profile image
Mstiles in reply to

Yes, the dreams are gone. I’ve kept a dream notebook for years and years and really miss them. I will have to research the weighted blanket for sure. Did you feel like you were trapped at first, kind of panicked when you first woke up? could you move at all or just slept in the same position all night. Is there one you recommend?

Oh I see the link (sorry, middle of the night here in California) I’ll look there)

in reply toMstiles

No worries..... blanket was odd at first, but comforting in way too! I did feel weighted own but got used to that. I think it keeps me kind of in place which means I don't wake myself up, rolling around. I live it now, two months in., and as said sleeping amazingly. I only the know the one I have which came from Poland (I'm in uk remember so my choices are different) you will probably have so many more choices! Good luck.

(warning they are pricy! At least here they were. My husband almost fainted!). 😬

Mstiles profile image
Mstiles in reply to

Glad your dreams are returning! I loved mine and got so much from them, the ones that seemed to make no sense when I woke up revealed a lot when I wrote them down and read them later. I guess because of missing that last phase of deep sleep because of waking up so often the dreams can’t come.

I’m a little claustrophobic so would be interesting to see if being weighted down would work for me.

Life is but a dream......

in reply toMstiles

They reckoned a weight based o. Your body weigh... I went on the heavy side. Maybe you’d want to go on the lighter side recommended for your weight.

I didn’t get much from my dream other than entertainment but they were always super interesting, detailed, and odd! I hope they come back like that soon. At least I’m dreaming again!!!!’ 😃

in reply toMstiles

Sorry they “recommended”

stellafmdm profile image
stellafmdm

Well I went to my Tai Chi Class this morning and am now finished mentally and physically for the rest of the day. Thank goodness an expected visitor failed to come in the early afternoon!!!

in reply tostellafmdm

Wow! Good on you!!!! Are you enjoying it? Is it relaxing or energising?

stellafmdm profile image
stellafmdm in reply to

It is great, and today it served to get my dropping BP to go up!! hard work though and the poor old muscles do ache in protest!

in reply tostellafmdm

Cool.

SheffieldJane profile image
SheffieldJane in reply tostellafmdm

Don’t you just love it when things get cancelled?

in reply toSheffieldJane

Yes! Aren't we just odd birds? 🐦

in reply toSheffieldJane

Oh god yes. I love cancellations. 😀

Hollyseden profile image
Hollyseden in reply toSheffieldJane

Snap!

stellafmdm profile image
stellafmdm in reply toSheffieldJane

I sure do!! gives one an unexpected space fit for anything! (not too strenuous though!)

SheffieldJane profile image
SheffieldJane in reply tostellafmdm

Usually end up staring at the wall wondering why I was glad the thing was cancelled.

Pongo13 profile image
Pongo13

AA first thing (and having read latest messages will read up on necrosis of the jaw), osteo appointment, sorting pension paperwork (all out of date as have not signed up for online info), Freddie Mercury beard and moustache sorted by beautician, shopping, petrol, lunch, prepped tomorrow's slow cooker meal, more pension and now getting reading to run tonight's adult autistic social group. Be good to go to work tomorrow for a rest! I'm knackered. Aren't we all busy bees!

in reply toPongo13

You sure are!!!! That was a full on day!!!!! ...and work tomorrow? Part of me is a bit envious and another part of me is sooooo very thankful that I don't have to get up at 5:00, rush around, hop on a bus and be at the hospital for 7:00!!!!!

Pongo13 profile image
Pongo13 in reply to

Work is part time! Easy journey! I left behind commuting some time ago (and often wonder how I would have managed had I remained in London! Makes me feel grateful and lucky once again). Gosh two shiatzus fighting....gotta go....

in reply toPongo13

Yes, I worked 3 days a week at the hospital.... I loved it. When I left, I left. There was nothing to bring home or worry about. I do miss it.

SheffieldJane profile image
SheffieldJane in reply toPongo13

Well you are Pongo and you are using your brain. Wow! Hats off to you.

Soraya_PMR profile image
Soraya_PMR in reply toPongo13

Wore me out just reading your day Pongo13

PMRpro profile image
PMRproAmbassador

Reading this thread - I think you all need a read of the fatigue and pacing post...

healthunlocked.com/pmrgcauk......

Insight329 profile image
Insight329 in reply toPMRpro

I wonder how many "I overdid it yesterday; should I increase my Pred today?" posts you'll get tomorrow. ;)

in reply toInsight329

Hahahahahahahahahaha

PMRpro profile image
PMRproAmbassador in reply toInsight329

Oh - the odd one or 20 I should think!!!! But the answer really is no - over-used muscles don't respond much to pred. Just rest and TLC...

Prevention is better than cure ;-) And practice makes perfect they say :-)

in reply toPMRpro

Believe me if I wasn't picking a new car up tomrw...postponed because of snow...i would let the car stink as usual. I lost 2 pacing days for the job due to not wanting to clear the car in the snow. I am hoping to get some advance money back so like to return cars reasonably clean. Two wet people and 2 wet dogs 3x a week in a mini equals dirty smelly car. I notice they have a car fragrancer you can spray at the garage vacuum place. Who on earth would spend 1.50 on that with knowing what it smells like first! Wet dog and foul fragrance. Yuk!👃

in reply to

Mmmmmmmm, wet dog and foul fragrance! Yum! Not.

SheffieldJane profile image
SheffieldJane in reply to

Oh it’s a nose whew! 🤣

in reply toSheffieldJane

😂😂😂😂

tgca profile image
tgca

Definitely feeling more tired more quickly with reducing the bloody preds but managed to change the double duvet, organise the miniature grandchildren's room/office, hung some pictures and hoovered... knackered so...a glass of wine methinks!

in reply totgca

You did really well! Good job! Enjoy the wine!

tgca profile image
tgca in reply to

I will don't worry!

tgca profile image
tgca in reply totgca

Haha.. the Borrowers... !!

Soraya_PMR profile image
Soraya_PMR in reply totgca

You have miniature grandchildren?

SheffieldJane profile image
SheffieldJane in reply toSoraya_PMR

Do you keep them in your pocket? I would.

After all that I forgot to ask if you had bought the book and whether it was a) easyish read

b) useful

in reply to

My book? "The Coping with Prednisone" book?

in reply to

Yes

in reply to

Ahhhh, sorry. Pred head! Yes, bought the book on amazon, but just started today. Only got a few chapters in beforeI fell asleep. However, it seems like it will be informative and entertaining. Two sisters, one a doctor, one a professional flutist. One gets a chronic, dilbilitating lung disease... and is prescribed high dose, long term Prednisone. Watch this space.

SheffieldJane profile image
SheffieldJane

Oh that sounds interesting I am in a book desert at the moment having downloaded some pretty tedious books due to fake reviews no doubt.

HeronNS profile image
HeronNS in reply toSheffieldJane

I am reading Matt Haig's How to Stop Time, having earlier this year really enjoyed his The Humans.

PMR2011 profile image
PMR2011 in reply toHeronNS

Yogabonnies book “Boyfriends” was good. Short stories work really well with Pred head! Well done Bonnie!

SheffieldJane profile image
SheffieldJane

Thanks for that Heron, I will check them out. I need to have a decent book on the go.

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