The Lighter Side of PMR - some Alternative Experi... - PMRGCAuk

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The Lighter Side of PMR - some Alternative Experiences on the Journey? ;-)

markbenjamin57 profile image
59 Replies

Greetings All

Well, there’s no question that PMR changes our lives. And, the powerful drugs that treat it can also affect our Mood and Behaviour in strange, sometimes dramatic ways. However, PMR can also bring a wonderful opportunity for Self-realisation and Development - as I’ve discovered for better or worse.

After looking back through my diaries during 2 years of 'surviving' PMR, here’s a collection of a few ‘Mind and Body’ experiences on the journey.

Warning: the following article contains references to events and scenarios which some readers here may find disturbing. If you are reading this in the first place (what, after all the others?), you are probably already slightly unhinged. If you find yourself either in convulsions of giggling or begging for mercy / reaching for the bottle in despair, you are probably quite normal. If you get to the end of this nonsense and are bonkers enough to ask for more, there is a confidential Helpline number buried somewhere on the forum. Be warned.. ;-)

On Symptoms and Doctors...

When I was first wheeled into my doctor’s surgery and crippled with PMR symptoms, the best way I could describe them was that I felt like a battered, crumpled and broken old piece of luggage. He took a long, worried look at me and then admitted that I was the worst 'case' he’d ever seen.

It’s true that, with PMR and steroids, you can have very vivid and surreal dreams. One night I dreamt that I was a pair of black velvet curtains and woke up feeling very confused. When I described the dream to my doctor he just said to me “Lighten up and pull yourself together!”

I told my therapist that, with PMR, I get angry a lot and feel like a pressure cooker - she said I just need to let-off steam.

On the Mind, Dreams, Symptoms and Therapies..

With PMR and Brain Fog, I’ve become very forgetful and developed a strange obsession with always closing doors behind me. My psychiatrist says it’s an open-and-shut case of OCD.

Due to Brain Fog, I often also keep finding myself repeating the same, random cluster of words endlessly without ever using a subject or verb. But my psychiatrist thinks it’s just a phrase I’m going through.

Since I’ve had PMR, I’ve also had recurring feelings of Déjà vu. I asked my therapist about it. She told me to let-go of the future and look forward to the past.

With PMR I keep having irrational fears that Life is slipping through my fingers. My therapist simply told me to ‘Get a grip’.

I also keep dreaming that I’m tripping-over a giant piece of cutlery at a motorway intersection. My therapist says I’ve reached a fork in the road.

I keep imagining that the wheels on my car are slightly out of shape. I don't put it down to PMR - I think it's just mild eccentricity.

I asked my GP: ‘with PMR, which self-help treatment is most effective for insomnia?’ His recommendation:

‘Sleep on it and the answer will come to you’.

Due to my disturbed mind as a result of taking the steroids, I’ve been spending too much time lately stalking my bullying boss with malicious intent, at the same time as ignoring my lovely spouse. My therapist says that I need to get my lurk-wife balance sorted.

On Healing, Reading and Research..

One day, in an effort to find the new ‘Me’ with PMR, I noticed a stack of discarded Personal Development books at the local charity shop. No prices, just a notice saying 'Help Yourself'. So, I scooped them all up and left the shop promptly. After a visit from the local Police and my arrest, my case was heard in Court the following week. In my defence, I pleaded ‘Brain Fog due to PMR’. The jury were kind and, fortunately, I got off with a Caution - it works every time! ;-)

Another day, on the floor in a corner of the charity shop, there was another Self-Development book, 'Reach Your Personal Heights Despite PMR!'. Trouble was, due to the PMR I couldn't bend down far enough to grab it. Life can be cruel..

Another 'bargain' book was entitled 'HOW TO FIND YOUR INERT SELF!'. Was this a typo - or maybe just written by a lazy Spiritualist?

Eventually, I settled on an intriguing-looking but un-priced book entitled 'The Beginner's Guide to English Pantomime Catchphrases'. I took it to the check-out and asked the assistant what the price was. She replied cheerily: 'It's only two Pounds, Sir'. Immediately, six people in the queue behind me shouted in unison: 'OH NO IT ISN'T..!'

I also tried to buy an audio-book about PMR - but was told that it was already spoken for..

So, instead, I bought a book about Demonology. What possessed me to do that?!!

The following week I bought a fascinating book about Parallel Worlds. After I read it I was beside myself with excitement.

Finally, there was a 'companion set' of 2 books entitled ‘The Joy of Texts’ and ‘All you need to Know about Sects’. There was a lot of interest in that one...!

I keep imagining that I’m stuck on Nov 13 1976 in my diary. Is it time to turn the page?

On Food and Diet..

Since I've had PMR I’ve developed an obsession with gravy - is it time to take stock?

I read somewhere that Charcoal biscuits are effective in the treatment of all sorts of ailments in humans and animals. So I started eating a couple every day. They must have worked - at my next check-up with the doctor he just looked at my shiny nose and then patted me on the head, gave me a bowl of water and told me to ‘SIT!’ in the corner of his office. I know my place…

Being an avid reader, and knowing that eating healthily is important with PMR, I was excited to discover that my favourite author, Sir William Shakespeare, was secretly a healthy-food fanatic too.

I looked through my collection of his works and was delighted to find the following titles:

Ham-Omelette

Julius Caeser Salad

Much Ado about Nut Roast

A Man for all Seasoning

Anthony and Ciabatta

A Midsummer Night’s Bream

Pilchard the Third

Romeo and Julie eat

.. and not forgetting Tolstoy’s ‘War and Peas..’

Then, I found some scribblings from the alleged Father of 20th century Psychology, including a copy of a Chinese restaurant takeaway order where he ordered: ‘Freud Rice please’!

There was also an account of a meeting with some psychoanalyst friends at a breakfast diner / restaurant where they all ordered a Freud Breakfast.

Now, Confession time: I got into some trouble a few years ago when I started to impersonate my hero, Sigmund, in a series of articles I wrote on Psychoanalysis in his name - and from which I earned substantial publishing royalties. The Police eventually caught up with me and I was charged with Attempted Freud :-/

Well folks, that's my best shot at giving you (and me) some temporary distraction from the roller-coaster of PMR - and all that goes with it. As the old saying goes, 'Laughter is a great medicine'.

Have a good weekend and keep smiling on the Journey..

MB :-)

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markbenjamin57
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59 Replies
olive2709 profile image
olive2709

No comment,Granddaughter thinks your strange mind you she is 14

markbenjamin57 profile image
markbenjamin57 in reply toolive2709

Nicest compliment I've had today olive2709! Best wishes to your GD :-)

Hi Mark, wow you are in form. I'm too tired to read it now, overdid it in the garden again, will I ever learn (don't answer it I know the ans) so I will read it after I've had my pred in thr morning!

Pete

markbenjamin57 profile image
markbenjamin57 in reply to

Thanks Pete - sleep well! Me too, soon. Zzzz.... :-)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Just phoned the nice men in white coats 👨‍⚕️👨‍⚕️ - should be ringing your doorbell any minute now.............then you can have a nice rest! Obviously overdone things this week.

markbenjamin57 profile image
markbenjamin57 in reply toDorsetLady

I'll wait eagerly for them DL - will they bring food and a teddy for me whilst in clink? ;-D

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tomarkbenjamin57

Course they will dearie, and make sure you take your medicine.

Once they've tucked you up, sure that nice man, Jeremy will be along to read you a fairy tale, maybe by the Brothers Grimm!

As the old saying goes...keep taking the tablets!

P.s. Just because you've got a white (ish) jacket don't think you can fool them.

Pat9442 profile image
Pat9442

Know what you mean! Sat in the restaurant with Great Expectations. What the Dickens was that about?

markbenjamin57 profile image
markbenjamin57 in reply toPat9442

Lovely! :-)

sweiss72 profile image
sweiss72

Funny - you were curtains. I was a velvet (very pretty blue) chair that kept moving around the room!

markbenjamin57 profile image
markbenjamin57 in reply tosweiss72

Tell me about it sweiss72..! :-)

Pat9442 profile image
Pat9442

.... and then bought myself a stick of Brighton Rock. That turned the grandchildren Greene!

OK enough is enough

markbenjamin57 profile image
markbenjamin57 in reply toPat9442

Ohhh, you're upstaging me now! Keep it up! :-)

Pat9442 profile image
Pat9442

Found it hard to take 39 steps when pmr at its worst but had to stay in my Room with a View instead

Bedtime I think!

Thanks for the fun

markbenjamin57 profile image
markbenjamin57 in reply toPat9442

You're very welcome - a privilege to give others here a giggle or two - if I can.

Sleep well :-)

daw50 profile image
daw50

You have brightened up my day and all of us on this forum I'm sure ...........Thank you

markbenjamin57 profile image
markbenjamin57 in reply todaw50

Ahh, Bless you daw50. Thank you too :-)

Marie1479 profile image
Marie1479

Great post Mark. PMR has really changed my life too! A bit crazy and unfiltered now. No more nice Italian girl here. Thanx for making me laugh tonight.

markbenjamin57 profile image
markbenjamin57 in reply toMarie1479

Thanks Marie, my pleasure. I like 'crazy and unfiltered' too - a lovely description!

Our precious Lives can be short, and too-often pre-occupied with the serious stuff - especially with things like PMR. For me, at least, Laughter and Smiles are a great antidote to adversity, and one reason why I write this crazy stuff here.

An 'Italian girl' in the USA? - I'm intrigued! ;-)

MB :-)

Marie1479 profile image
Marie1479 in reply tomarkbenjamin57

Yes laughter is the best medicine. I'm born in US. Grandparents on both sides came over on the boat.

markbenjamin57 profile image
markbenjamin57 in reply toMarie1479

Tell me more sometime! It's late in the UK now so let's continue later? Zzzz :-)

My twin who should be worried this might happen to her. So, Was being asked still 2 years into this journey that maybe we could talk on the phone and you could tell me what were your symptoms when this all started. I would never take prednisone she says.

So, I shared that to say I LOVE YOU AND YOUR WIT. Tell your wife she is lucky.

You made me come down from the closely erupting volcano. Thank you!,,

markbenjamin57 profile image
markbenjamin57 in reply to

Thanks Lin, I'm never quite sure how my wordplays will work across international boundaries (e.g. British / American English). As for my (ex) wife, we are still friends through thick and thin. It's me that's lucky there! :-)

Marlenec profile image
Marlenec

Thank you Mark

You're a ⭐️

markbenjamin57 profile image
markbenjamin57 in reply toMarlenec

All part of the service Marlenec ;-)

Rimmy profile image
Rimmy

Hello Mark

Very entertaining !! On a shall we say 'more serious note' I am interested in your comments about 'mood' and 'dreams' and was thinking of asking others on this forum about any notable changes they have experienced in these areas. I have had several very - unusually- intense dreams myself recently and wondered if they were related to the Prednisolone I am taking for PMR (started quite high recently and still on 17.5mg). Also 'mood' changes - I notice I feel calmer than I used to do but maybe a bit too 'even' in an unusual way for me. Regarding Freud - you could choose a better 'hero' I think - if you like reading try Frank Sulloway's book - 'Freud Biologist of the Mind' - it has some fascinating insights.

Thanks for adding some laughter to this forum and my day !!

markbenjamin57 profile image
markbenjamin57 in reply toRimmy

Many thanks Rimmy.

Yes, I do have very vivid and surreal dreams quite often. Don't know if that's due to the preds or just my sub-conscious getting busy (or both)! Joking aside, I'm certain that these drugs affect the Brain's chemistry, as the experts here will probably confirm. It would be interesting to know how, exactly?

Thanks for the book recommendation - I'll have a look.

Enjoy your weekend :-)

jane57 profile image
jane57

Hi mark, read your post aloud to my husband this morning and we are both sitting in bed giggling. You are so funny and as you say a good laugh is a great medicine. As I said before, you are such a legend. I love your contributions to the forum, long may they continue. Thank you so much . Jane x

markbenjamin57 profile image
markbenjamin57 in reply tojane57

Haven't you both got better things to do on a Saturday morning than read this nonsense to each other?! (only joking..;-) )

Sincere thanks and have a good day :-)

J-rowles2 profile image
J-rowles2

Thanks so much that has cheered up my Saturday morning:)

Jackoh profile image
Jackoh

Again Mark - words fail me!!! But obviously not you!!!! Well presented, flowed nicely and jokes were like peppered shots throughout. Does make me laugh. Thanks for wanting to lighten our mood and day!!!

Jackie

markbenjamin57 profile image
markbenjamin57 in reply toJackoh

Thanks Jackie - I really don't know where this silly stuff comes from, but once I start writing I'm in another world (but people who know me well say that's the case most of the time ;-) )

gwisgi profile image
gwisgi

I feel better already, BUT, i broke my leg when i fell off my stool laughing!!!!

markbenjamin57 profile image
markbenjamin57 in reply togwisgi

Oh no, gwisgi! I feel Litigation looming? "The Accused caused serious injury to a total stranger as a result of his reckless use of humour on a social forum" :-/

Polylinc profile image
Polylinc

💤💤💤😴

So (which appears to be the new starting word) I have finally read your tome which was as usual a delight to read. However I should have read it last night. If you remember I was too tired due to over activity in the garden. Sods law I couldn't sleep due to various pains in part of my body. After reading your text I realised that I should have read it last night because it would have put me instantly to sleep ZZzzzzz. Only kidding Mark, please keep up your good work. I enjoy it and I am sure others do as well.

When ever you can, have Fun

Pete

markbenjamin57 profile image
markbenjamin57 in reply to

So,(!) Pete - don't overdo it today. Thanks for your kind words :-)

in reply tomarkbenjamin57

I can't remember who said it, but it goes like this "you are noughty - but I like you"

Ps l dont know how to make a smiley, I'll have to read PMRpro's not again!

markbenjamin57 profile image
markbenjamin57 in reply to

Pete, it was one of the late Dick Emery's hilarious characters - a very 'robust', well-spoken lady of a certain age(!) who always chatting up young men and finding a saucy innuendo in their innocent responses. When the moment was right, she would adopt a coy expression, and with voice lowered seductively say: "Ohhh, you are naughty - but I LIKE you" at the same time as giving the poor lad a hefty shove which knocked him off his feet. Makes me giggle remembering it! :-D

in reply tomarkbenjamin57

That's it exactly. Just checking your memory bank

P

markbenjamin57 profile image
markbenjamin57 in reply to

Actually Pete, the phrase was "You are AWFUL, but I LIKE You"! Got there eventually! :-)

in reply tomarkbenjamin57

Yes, that's it. Just checking. Brain fog.

P

markbenjamin57 profile image
markbenjamin57 in reply to

Don't tell me about it Pete! :-)

mzz70-70 profile image
mzz70-70

Oh Mark, better than a bedtime story, but not one to read to the grandchildren, they would think Nana's gone Doo-Lally !! Thanks for the fun.

markbenjamin57 profile image
markbenjamin57 in reply tomzz70-70

You're welcome mzz, nice to bring a few giggles to the 'adults' here (I say that advisedly..) :-)

Marcy47 profile image
Marcy47

Thanks Mark,

Started my day with a laugh, forget the dull weather, you are a ray of sunshine! x

markbenjamin57 profile image
markbenjamin57 in reply toMarcy47

Ah, bless Marcimay - thank you!

Perkey profile image
Perkey

The old ones are the best so the saying goes.

markbenjamin57 profile image
markbenjamin57 in reply toPerkey

Yes Perkey, and some of them VERY old! :-)

nymima01 profile image
nymima01

Talk about strange dreams - I dreamt friends of ours wanted us to mate our dog and they would take the puppies. Well, in my dream we mated our dog and she had kittens instead! Our friends said "We don't want kittens, we wanted puppies!" My mother and hubby always want to hear about my dreams and we always have a good laugh in the morning!

I enjoyed your humorous take on PMR! Very funny stuff!

Prd2122 profile image
Prd2122

You are one funny guy!

markbenjamin57 profile image
markbenjamin57 in reply toPrd2122

Many thanks Prd2122 - I blame you lot for encouraging me! ;-).

But seriously (if that's possible), I really appreciate knowing that I can at least bring a few smiles to the forum in between the often serious stuff here.

I've always believed that Laughter is a great 'medicine' / therapy - wouldn't it be great if we could get THAT on prescription!

Thanks again

MB :-)

trish29 profile image
trish29

Hi mark..Can i take you with me on an appointment to my Main GP tomorrow ?? He isn't very sympathetic to My PMR and i have had a Roller Coaster of a journey ..I need to get my Solpadol Painkillers reinstated which a locum changed in September and the Practice keeps rejecting them when i put in a Repeat prescription . I was put on Tramadol and they made me sick .Unfortunately i had a Nasty flare in Oct /Nov when my Eldest Brother was taken ill and he died on the 20 Feb .. We his family didn't have his Funeral until last Wednesday and i amazed myself how i coped and i Had to journey to Hampshire twice during this Bereavement time , so i had to up my steroids to get through .. He will nag me tomorrow so with your sense of Humour it could be fun ..Best wishes trish29

markbenjamin57 profile image
markbenjamin57 in reply totrish29

Hi trish

Thanks for your invitation - I wish..! It's a shame that some GPs / Rheumies neither have the Bedside Manner nor a SOH. It can help a lot when a patient is ill - and anxious too :-(.

Sorry to hear your family news, bereavements of close family / friends are hard to deal with at the best of times and especially difficult emotionally with health conditions like PMR where the emotions are 'frazzled' already.

We've also had 2 losses in the last month. One, a 'young' friend and family man in France at the tender age 49 after a short but stoic battle with cancer, and our brother in law suddenly at age 72. I agree with you about upping the preds a little at stressful times if it helps you cope, I'm sure others here will agree too.

Good luck tomorrow. Keep a steady head, go in armed with the facts, and be Assertive - i.e. calm and clear about what you want / need (or don't), and why. Sometimes even the experts need some 'push back' from the people they provide a service to. If that doesn't work, put him straight on to me (or better still, the real experts here!) ;-)

Fingers crossed for you, keep us all posted

MB :-)

trish29 profile image
trish29

Thank you for your Reply MB.. Sorry for your losses. I have been through quite few bereavements over the years and lost my late Husband to Cancer 21 years ago. I have a Good Partner but my condition gets him down sometimes . Back to my GP. After 13 years with PMR i only see him when i have to ,im hoping he might get me back to my Rheumatoligist before my 6th May appointment to get more help with my steroid reduction and flares to my legs . I always write everything down ..i have Bowen Therapy booked on Tuesday which usually helps my pain level..Take care trish29

markbenjamin57 profile image
markbenjamin57 in reply totrish29

Thanks trish, well, maybe we should be thankful that we 'only' have PMR when things could be a lot worse!

13 years with PMR? - I can't even start to imagine it! 2 years has been enough for me but I'm hopeful that I'll escape lightly compared with some. Yes, reducing the steroids seems to be a very unpredictable process even with the 'best' of plans.

Keep smiling, and try to stay positive in the meantime

MB :-)

Patience47 profile image
Patience47

Thanks. First time I have laughed in quite sometime. ☺

markbenjamin57 profile image
markbenjamin57 in reply toPatience47

Thanks too, it's helpful if we can have a giggle in between the tougher stuff of PMR ;-)

Admiral06 profile image
Admiral06

Well written Markbenjamin57. I just went through a period of brain fog and your words about this and other issues really hit home.

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