Me and my Pred: A retrospective ranting.... things... - PMRGCAuk

PMRGCAuk

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Me and my Pred

36 Replies

A retrospective ranting.... things continue to be pretty okay for me the past serveral days. Shhhhhhhh.

My "Pred" experience has been a double edged sword. While it offered immediate relief from the horrible symptoms of GCA, it (in a very short period of time) gifted me with a myriad of equally, hideous and more dibilitating aches and pains, and physical, mental and emotional distresses. I understand the benefits, I really do... and I am thankful to it, as I stupidly waited 19 days to seek treatment and could have easily lost my eyesight; but for me this drug is Kryptonite. It chews me up and spits me out. The side effects and withdrawal symptoms have been endless. And I only vaguely remember that awful headache, way back in November? Was it really that bad? ( (Funny how the human mind believes and remembers what it wants to, huh?) Pred has become a friend I "love to hate," and while I recognise I can't live without it, I look forward to the day when I can release it from my life forever and bid it adou.

Until then... we are joined at the hip!

Apologies, Artist unknown.

36 Replies
stellafmdm profile image
stellafmdm

I love the picture!!! so expressive, Pred is your best friend even if it is a dragon-(ess?)

in reply tostellafmdm

I agree!

Hollyseden profile image
Hollyseden

Poor you, having a bad day today too? Concentrate on that day you felt good, sitting in the sunshine with your chai latte. There will be more of those to come. Ps avoid oncoming buses. I think one of them got me overnight🤐

Oh, no!, sorry! Having a great day! Actually I have had several really good days... Shhhhhhhhh! I am so very thankful! 😇 However I saw the beautiful drawing of the baby (identifified as Pred) and realised my experience was so very different to that. I just thought I'd relate my thoughts... I retrospect.

Rimmy profile image
Rimmy in reply to

I just read this Melissa - so I also construed you were feeling really bad again which I thought was concerning - hence my long post - so please ignore if you are feeling better which I am very happy to hear !!

Rimmy

X

in reply toRimmy

So sorry.... Never write a post when you are hurrying out the door! Ekkkkkk, husband calling! 😲

Hollyseden profile image
Hollyseden in reply to

Well I'm very glad I read that wrong because it's great you're having good days in a row.

I don't feel as bad as I did when I wakened either. I managed to lift my granddaughter out of the bath myself 🙋 yaay! Quite often have to enlist grandpa to help.... So today could be a good day here too 👏👏

in reply toHollyseden

Ohhhhhh, you gave your granddaughter a bath! I'm jealous! Ohhhhh, Good in you!

Rimmy profile image
Rimmy

I just deleted the rather long concerned post I wrote about how you seemed to be feeling - as it is clearly superfluous given you are 'good' at present - it must have been that really ambiguous image that worried me (LOL) !!

R.

XX

in reply toRimmy

Oh Rimmy, I am soooooo sorry!

Patience47 profile image
Patience47 in reply to

Well, I mamici1, I understood your post, and glad you're still doing well.

Edward

Rimmy profile image
Rimmy in reply to

That's fine - i am just HAPPY you ARE feeling better - perhaps I was having a tooo 'serious' day ...

XX

in reply toRimmy

❤️❤️❤️❤️

SheffieldJane profile image
SheffieldJane

Like the blessed amnesia that follows childbirth, otherwise there would be a less over populated world.

I get flash backs, having to have Gord stop the car on car journeys because I hurt so much. The embarrassing bent shuffle walk of shame to the doctor’s room from the waiting room. Coming down stairs on my bottom. Looking forlornly at a deep sided hotel bath, after a long haul flight knowing that I could not get in or out of it. Using Theo’s pram like a walker thing.

I woke up this morning feeling wonderful after a deep dream filled sleep. Why, I don’t know. I had a horrible week last week, I took an extra 1 mg (8 mg). Have been guilt filled doing nothing much for days. Irritable and down.

Musn’t analyse too much, just accept it for the gift it is.

Me and my Preddy bear have no worries have no cares, me and my preddy bear, just play and play all day 😘🐻🎼

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

" Why, I don’t know" - really not? That 1mg of our little friend can be the difference between hell and something liveable with...

in reply toSheffieldJane

Ahhhh, yes that amnesia that follows childbirth! ☺️

For some reason my early Pred day flashbacks came pouring in when I saw the Mstiles beautiful drawing of her Pred... I could not realate, but in all fairness my sucky Pred days were like last week!!!

Jean56 profile image
Jean56

Love the picture, it says it all. So pleased your still feeling ok, long may it last! I’m flat out on the sofa, every joint aches and I swear my arms and legs each weigh a ton. Yes, it would be worse without the Pred but there’s no option. Just delegated wobble husband to make lunch. We really are a creaky couple!

in reply toJean56

Ohhh I hate that feeling, when your arms and legs weight a ton! Ohhhhh, just rest... you have earned it!

Insight329 profile image
Insight329

Love the picture, too, and so glad you are finally having good days in a row. Remember not to get too excited and overdo.

I cannot begin to tell you how many times I’ve said ‘Pred is my friend’ - to myself and to others. And I still say thanks to those little white pills for the work they will be doing for me when I take them. But to be quite honest, I really look forward to the day when I can break-up with them. Until then, Pred is my friend. Sigh.

in reply toInsight329

I am trying to pace, pace, pace. We are in York, looking at properties all week. So a lot of morning/early afternoon driving around and looking at places... and then mid-afternoon lounging on the couch, drinking tea at the comfy Airb&b! ☕️

Jean56 profile image
Jean56 in reply to

I’m an exiled Yorkshire woman, having moved to Sussex 42 years ago. I take it your moving north from Brighton to York. Beautiful city but cold! You’ll need lots of extra layers to wear. It’s a wonderful part of the country. I miss the Yorkshire Dales and the North York Moors. I can even remember when I had the energy and strength to walk the said Dales and Moors! Doubt whether I would have the energy to get out of the car never mind walk for miles.....

PMRpro profile image
PMRproAmbassador in reply toJean56

Yes - I was about to express the hope that mamici has a good selection of warm undies!!! Brighton winter gear will be about right for the North York Moors in summer...

Jean56 profile image
Jean56 in reply toPMRpro

Definitely required, blooming freezing! That’s the one advantage of living in the south east we generally miss the really awful weather. It’s not been great this winter but compared to my family ‘up north.’ They woke one morning to find they couldn’t see out of their bedroom window, a snow drift obliterated their view. They do live high on the Pennines, beautiful but bleak. They tell me I’ve become southernised!

PMRpro profile image
PMRproAmbassador in reply toJean56

Our daughter is a paramedic in Whitby - has had rather more snow and ice than she likes this year. Our winter has been foul - kept snowing. It's meant to snow once, heavily, then the sun comes out. And by early March you can sit outside with a drink at lunchtime. Fat chance this year!

Hollyseden profile image
Hollyseden in reply toPMRpro

Love Whitby. Went there last year for a visit while staying in York. Could not believe how busy it was. Robin Hood's Bay is beautiful. Reminds me of Cornwall where we lived for several years. All these places milder than here in Scotland.

Jean56 profile image
Jean56 in reply toHollyseden

Last time I visited Whitby I was horrified how busy it had become, a victim of its own beauty! Don’t know where you are in Scotland, that too is a beautiful country. Three years ago before the onset of PMR we spent several months travelling around Scotland. Wonderful memories.

PMRpro profile image
PMRproAmbassador in reply toHollyseden

You would be surprised! We moved from north of Dundee to Durham - I had never been so cold in my life! We used our garden in Perthshire, rarely did in Durham. And Whitby isn't a lot better! The winds come from Scandinavia and via the North Sea. As Jean says - Whitby isn't as nice as it once was. And parking is a nightmare!

Lee1945 profile image
Lee1945 in reply toPMRpro

We get that cold wind from Scandinavia down here in Margate too

SheffieldJane profile image
SheffieldJane in reply toJean56

You are all just nesh as we say in Yorkshire. Isn’t that right Poopadoop?

Hollyseden profile image
Hollyseden in reply toSheffieldJane

Nesh? Do tell 😊

SheffieldJane profile image
SheffieldJane in reply toHollyseden

Softies who complain about the cold like my family in Australia who have become very nesh.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

But there is cold and cold. Minus 15C at home doesn't bother me in the least. Plus 7C in Whitby can be awful...

Jean56 profile image
Jean56 in reply toSheffieldJane

Definitely nesh!

tgca profile image
tgca in reply toJean56

Haha... I'm a half Yorkshirewoman and proud!

Insight329 profile image
Insight329 in reply to

HOW EXCITING!!!! I love looking at property. I love looking at it in person, I love all of the home buying shows on tv. I just love architecture and how people design and decorate their homes. Sometimes when I am bored, I'll pick a city and log on to their real estate sites pretending that I'm moving there. I've looked at Brownstones in Boston, houseboats in Seattle, etc. This is my favorite house -- It's in New Zealand and was showcased in a tv program about beautiful homes. Ohhh..those trees!!!! homestolove.co.nz/inside-ho...

Have fun, enjoy, and good luck!

Rugger profile image
Rugger

Property hunting doesn't dound like pacing to me! Good luck with it, all the same, then you can join our meet-up in Leeds or Ilkley. We have 2 members who travel from York.

Good to hear that things seem to be improving for you at last.

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