Me and my Pred

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.

[stellafmdm]

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

[Hidden in reply to stellafmdm]

I agree!

[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🤐

[Hidden]

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 in reply to Hidden]

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

[Hidden in reply to Rimmy]

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

[Hollyseden in reply to Hidden]

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 👏👏

[Hidden in reply to Hollyseden]

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

[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

[Hidden in reply to Rimmy]

Oh Rimmy, I am soooooo sorry!

[Patience47 in reply to Hidden]

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

Edward

[Rimmy in reply to Hidden]

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

XX

[Hidden in reply to Rimmy]

❤️❤️❤️❤️

[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 Ambassador in reply to SheffieldJane]

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

[Hidden in reply to SheffieldJane]

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]

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!

[Hidden in reply to Jean56]

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

[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.

[Hidden in reply to Insight329]

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 in reply to Hidden]

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 Ambassador in reply to Jean56]

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 in reply to PMRpro]

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 Ambassador in reply to Jean56]

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 in reply to PMRpro]

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 in reply to Hollyseden]

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 Ambassador in reply to Hollyseden]

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 in reply to PMRpro]

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

[SheffieldJane in reply to Jean56]

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

[Hollyseden in reply to SheffieldJane]

Nesh? Do tell 😊

[SheffieldJane in reply to Hollyseden]

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

[PMRpro Ambassador in reply to SheffieldJane]

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 in reply to SheffieldJane]

Definitely nesh!

[tgca in reply to Jean56]

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

[Insight329 in reply to Hidden]

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]

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.