A Discontented Occupant in a Defiant Body - PMRGCAuk

PMRGCAuk

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A Discontented Occupant in a Defiant Body

55 Replies

I imagine it's true of any long term illness (PMR/GCA or any chronic, autoimmune disorder) you have good days and you have bad days.

With me, I usually know a bad day, before I even open my eyes.

The first thing I notice is the dull headache. It's usually the same one I went to bed with, the night before. A few seconds later (as I try to turn over) I realise that my whole body is stiff and ungiving. {An image of the "Tin Man"crosses my mind, and a wan smile crosses my lips, because of all the characters in the world that I could have chosen to emulate, I have unwittingly chosen, the Tin Man, from the Wizard of Oz!}

As I slowly get out of bed and shuffle to the bathroom, my hips and thighs feel like I've run a marathon... or been hit by a bus (or I got hit by a bus, while running a marathon!) I actually have no idea what either of those things feels like, but I imagine this is pretty damn close.

"What the heck... Did someone lower the toilet in the middle of the night?" I don't remember it being this low! *loud groaning noise*

While sitting there, much longer than I actually need to, I find myself wondering how much I had to drink the night before. I then realise, that I didn't have anything to drink, the night before! Wow! Bummer, because this would be a real Jim Dandy of a hangover, as hangovers go.

My teeth are sensitive and on edge... it feels like I've been chewing on aluminium foil all night. And what is this thick, gritty film covering my eyeballs? Also, my head won't turn! WTF? "OMG, my neck must be broken!"

Getting dressed is always a challenge. As I attempt to put my socks on, I pretend that this menial task has become an official Olympic Event! Unfortunately, I usually get only the Bronze, because my timing is off and my technique is sloppy.

Once I've made it from the bed, to the bathroom, to the couch... I just sit and I slowly exhale.

My easy, breezy days of bouncing up, getting dressed, walking to the kitchen and making that first heavenly cup of hot coffee or tea are well over! No, now, I have to take my Lansoprazole (a proton pump inhibitor) and then wait a half an hour. I can then eat a small bowl of cold, plain, Greek Yogurt (Okay, sure... I do put blueberries and honey on it, but still!) I let that settle before taking my Prednisolone (aka "The Devil's Tic Tacs") which is a curse, disguised as a blessing, or vice versa, I'm not sure! In any case it's a corticosteroid used to treat, among other things, dreaded "inflammation!"

Who even wants that cup of coffee now??

With clothes on my back, yogurt and Pred in my belly, I'm now ready for anything! And if by anything, I mean a long sit down on the couch, to gather my thoughts, energy and stamina... yes, anything!

How can I be only 65, mentally feel like I'm 35, and physically feel like I'm 85?

It just doesn't make sense... the Universe is playing a unscrupulous trick on me, of this I am sure! I keep waiting for a guy to jump out of a corner, saying "Smile, you're on Candid Camera!"

The "good" days are not so easily recognised. I think it's that old "Fool me once, fool me twice..." adage.

I tentatively open my eyes, thinking that any minute my body will begin to rebel to the movement I'm imposing on it; but much to my surprise, it doesn't! I put one foot on the floor, and then the other. I wait a minute to see what part of my body is going to object. "Hmmmm? Odd. All seems well." As I start to lumber to the bathroom, I notice that I can actually move more nimbly... it's my mind holding me back, NOT MY BODY! I begin to walk, upright and with conviction and to my surprise I find that the toilet has been been put back to it's proper height! My eyes are seeing clearly and my head isn't pounding. What on earth is going on?

Now in the living room, raising the shades, I automatically turn my head to look out, at the weather and I realise, "Hey, I can turn my head!" I can actually look over my shoulder! It's a miracle!

Living in a defiant, uncooperative, unwell body is, needless to say, a pain in the arse. I mean yea, sure, it's my body; I've had it for quite some and I'm very fond of it... BUT recently, it fights me "tooth and nail," every step of the way.

It's like an adolescent child struggling for it's liberation and inevitable unyoking, but still needing me for my money and a ride to the mall!

It won't do as I say, but it doesn't have a clue as to what it should (or wants to) do!

It attacks itself with passionate, violent and sometimes harmful intent and then cowers in the corner, begging for forgiveness, healing and to made whole again.

It yells and screams (at the top of it's metaphorical lungs) and then it whimpers and whines, when the shit gets too real!

I honestly thought I was done "raising kids," yet my body has regressed to a point where it now requires 24 hour supervision, constant surveillance, and an occasional reprimanded. Not to mention being put in "time out" (although it actually seems to like that, for some reason?)

I rant. I rage. I try to ignore it. I sometimes confront it, but I always acquiesce...

My goal is to be a patient, understanding, zen-like occupant; one who accepts whats happening, without judgement or condemnation... but it's hard.

When your imperfect, defiant, elderly body kicks and screams and acts out like an inflamed (no pun intended) teenager, there is not a lot you can do.

Maybe have a small glass of wine (but not too much!) take a nap, watch a few movies; maybe some on-line retail therapy... and try to go with the flow.

Because as we all well know... this too shall pass.

{Image by Silvia Ciccu, Cagliari, Italy}

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55 Replies
Longtimer profile image
Longtimer

Oh, that is soooo me...lots of days anyway. Love the "Devil`s Tic Tac"...brilliant...

I do think one of our hardest battles is the mind is a different age to our bodies!....

What mg are you down to now?...I am at 7.5....big fatigue time!

We battle on....

in reply toLongtimer

HI, LT, I was down to 9.0, but played the "How Fast Can You Lower," game and I lost... I'm now on 18.0!!!! Sorry about the fatigue!!!!! ...but still 7.5 is GREAT!

Longtimer profile image
Longtimer in reply to

Yes, I know what that`s like...Rheumies made me do the, "lets see how quick you can lower and be in pain!"..that`s why I think I`m a Longtimer...I now don`t hurry it at all, my body won`t let me. I stay for a couple of months at least at every drop I do. We all respond differently to pred.....we can easily be tricked by it....

You have done well, you have been at very high doses in the past.....

Daisyfield profile image
Daisyfield

What a fab post...I think you should write a book while your body is in time out.

in reply toDaisyfield

Thank you so much Daisyfield, for that vote of confidence!

jinasc profile image
jinasc

Try this to ease your mornings.

If you wake up after 2.30am, eat something, drink something, take your pred only and go back to sleep. When you wake up a warm shower (don't wash you hair everyday. .........................then start your day. The dull headache, spread your fingers through you hair and tug gently all over. Each hair has a muscle and they get tense...........a gently tug relaxes them and the dull headahce should go away..............it is a bit like Shiatsu.

Your pred needs time to work and your adrenal glands generally start around 2.30am getting you ready for the next day.

Let us know if your mornings improve..............

in reply tojinasc

Oooooo, I like the way ALL of this sounds, especially the gentle tugging on my hair! THANK YOU!

jinasc profile image
jinasc in reply to

All Tips and Tricks supplied by patients for patients.

One day I might just put them all here in a post.

in reply tojinasc

Do it!!!!

Bouvier profile image
Bouvier in reply tojinasc

I started taking my pred as soon as I wake up in the morning between 6&7 in the morning I've only started doing this about 4wks ago taking the ''tick tacks'' with a glass of milk when I go to bed at night … live in the tropics in Oz this works for me, now have to figure out a way to keep the milk cold enough when I go to bed as getting out of bed is such a struggle, having beside the bed is just god sent

Hollyseden profile image
Hollyseden in reply toBouvier

A thermal cup works for me 👍

Bouvier profile image
Bouvier in reply toHollyseden

Good Idea ! have to shop round for one ….thanks for the tip !

HeronNS profile image
HeronNS

When I was a young woman and all things still seemed possible and within my grasp I had a dream in which I was told that what was not paid for in youth would be paid for in old age. I believe my debt is being collected now. 🤨

in reply toHeronNS

Wow! I like that! Thanks!

powerwalk profile image
powerwalk

My life described!!! Well put!

in reply topowerwalk

Thanks!

jinasc profile image
jinasc

How about you just massage your head lightly, just like when you shampoo, in a circular motion. You could put Shiatsu in your search engine and look for some photos 🤔

Sometimes you have to be creative...............BTW, if you put your thumb and forefinger on the bridge of your nose and then do a circular motion, that can help relieve a tensions headache. And/or put you forefinger on your temples and again a circular motion.

You can tell I am an 'old wife' who uses old wives tails...................

😼 Oh damn it I have lost that witch again....................

Rimmy profile image
Rimmy

I'm with you M. in this world of 'Tin People'- so eloquently put ... at least your brain still 'fires' well and we'll need what neurons we have left when 'everything' resolves 'one fine day' ....'

xxx

in reply toRimmy

Cheers my friend! xxxx

York54 profile image
York54

Fabulous post!! 😀😀😀 thankyou 👍👍👍👍👍

in reply toYork54

Thank you.

scrambledegg profile image
scrambledegg

Insightful and beautifully written. Thank you.👌😄

in reply toscrambledegg

Thank you.

Daffodilia profile image
Daffodilia

I know the feeling - just one thing - I think you should not take Pred with yogurt?

in reply toDaffodilia

Oh! Why? I got the idea here on HU... many people swear by it. Do tell!

Chrob profile image
Chrob in reply toDaffodilia

I take pred as soon as I’m awake , kettle on ,thick yogurt a spoon full with a tablet then a couple more spoons to make sure . I find if I wait till after eating it takes longer to work . Not a early morning food fancier.

Hollyseden profile image
Hollyseden in reply toChrob

Same here. I also find just milk with pred works fine for me. Usually awake a few hours before I bother with food. Though to look at me, that sounds untrue 🐷 Thanks pred

BethandHoney2017 profile image
BethandHoney2017

So well written and so accurate a description. Thank you just what I needed this morning. Keep in down the yellow brick road 🤨

in reply toBethandHoney2017

Thank you!

Daffodilia profile image
Daffodilia

I think the leaflet with the pills says leave hours before or after dairy but may be I am misremembering?

in reply toDaffodilia

Hmmm, I'll take a look! Cheers

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDaffodilia

If you ask the question online - most sites say take with water or milk to avoid stomach problems.

And we do often recommend taking with yogurt - this often negates the need to use a PPI.

Actavis brand says take with water - and following a meal. No comment about dairy products - just avoid liquorice.

PMRpro profile image
PMRproAmbassador in reply toDaffodilia

Taking pred at the same time as calcium sources MAY impair absorption. The evidence has been that small amounts of dietary calcium are not a problem but taking supplements is.

A yoghurt has about 100mg calcium, a supplement about 500mg. The calcium must be extracted from the yoghurt, the supplements break up in the stomach and coat the pred so it is more difficult for the stomach acid to get at it.

Lochy profile image
Lochy

Great post! So many of us can relate to it. The ‘devils tic tac ‘ - brilliant.

in reply toLochy

Thanks!

However, I did not create that clever saying (Devil's Tic Tacs) I read it somewhere.

PMRpro profile image
PMRproAmbassador in reply to

It was a man on the forum a few years ago who first used the term here - but there was an ecard with a bottle of pills labelled Prednisone 5 mg with the caption "Satan's Little Tic Tacs" way back before 2013.

Noosat profile image
Noosat

I will not dwell on feeling bad. Got up this morning with uncomfortable/painful hips. What can I do about it ? Pull in the Abs and Glutes while I stand at counter making coffee. The pain diminishes and sometimes disappears. Drink coffee, eat toast, take the wonderful/awful prednisone (5mg. now) look at email, shower, dress and go to fill bags at local food bank for people less fortunate than I am. Yes, my legs will be robot like and I will be fatigued, perhaps, for rest of day. However, this disease is not ME. I will continue to smile and count my blessings. :)

JanetRosslyn profile image
JanetRosslyn in reply toNoosat

Well said. I have PMR/GCA, it does not have me. :-)

Noosat profile image
Noosat in reply toJanetRosslyn

Yes, Just got back from volunteer work. Went easily, with nice people working beside me. Now I will feed Lily, water plants on deck and then sit out there for a read Have a great week-end.

Whippetygirl profile image
Whippetygirl in reply toNoosat

You are amazing.x

Noosat profile image
Noosat in reply toWhippetygirl

Not really, just trying to do the best I can. Sometimes it is very hard, especially, the mornings. However, as of now. 6a.m., just had coffee and toast, which helps, my optimism is rising. Even if I don't feel up to going to park as planned, there are lots of other things I can do. Yesterday I got some herb seeds to plant in pots indoors, and the kitchen needs an energetic clean. Keep smiling and think of all the little pleasures there are to look forward to. :)

PMRCanada profile image
PMRCanada

Wonderful post M!

I’m certain it describes what some of us have gone through on our journey thus far. Some days (and nights) I felt like that, especially before I started taking my pred at a different time, and when I stubbornly stayed at to low of a dose for too long, and flared.

You may want to ask your Dr. about Rayos given you are in the UK. When I started getting up at 2pm to take first part of my split dose, it was a game changer for me. Later I bought empty enteric capsules and stuff my uncoated pred tablets inside and take at 11pm (much easier than getting up at 2am). Most mornings are much improved overall, and if I take the second part of my dose at 11am, I’m without pain the rest of the day/evening.

Seems it takes time, patience, and experimentation to get the pred to work optimally given the differences in the way our bodies metabolize it. Check with your doc before making changes to ensure they are on board and have no concerns.

Wish I was there to commiserate with you, watch movies, and supplement with some wine. “Would you like some cheese with that whine?” (kidding, of course....I can be the queen of whining at times).

Just know we are with you and “get it”! Keep on writing!!

PMRpro profile image
PMRproAmbassador in reply toPMRCanada

Lodotra/Rayos in the UK is only an option privately - at a cost of up to IRO £100 per month. It was approved for RA morning stiffness for a time but at present it is restricted for that too. What may be possible is using gastro-resistant pred in a similar way, taking it before bed as it takes 4 or 5 hours to get into the system,

Lanakay profile image
Lanakay

I absolutely love your post! It really tells it like it is! Thank you!

in reply toLanakay

Thank you.

By the time I reached the end of your post, I was in tears. Not those of pity or lack of hope, but your writing struck a very vibrant chord. I've read it again today and it remains striking in summary of how this horrible condition affects us daily. Thank you 😀🍷

in reply to

WoW! Thank you... what a lovely complement! Thank you.

Whatgrange profile image
Whatgrange in reply to

Brilliant writing! Some more, please!

in reply toWhatgrange

Thank you so much.

Visby profile image
Visby

Great post my toilet lowers it’s self as well 😩

in reply toVisby

*laughing* I'm happy mine's not the only one!!!!! Thank you so much!

tangocharlie profile image
tangocharlie

Love that, brilliant writing, thanks for the smile

in reply totangocharlie

Many thanks.

Koalajane profile image
Koalajane

You have a wonderful writing style, so easy to read and relate to. Well done. Keep writing.

Jane

in reply toKoalajane

Thank you so very much!

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