It has been nearly a couple of years now since I discovered I had PMR then a few weeks later GCA and I am happy to have tapered down to a now 'respectable' 12 mg with less expectation of any horrid (new) 'side effects' cropping up.
Generally speaking I have been feeling much more like my 'old self' and getting on with life so well that often I have had to remind myself that I'm not quite 'better' yet ! Of course I didn't really expect to be - I am realistic and realise looking at the usual time-frames that I probably have (maybe even) 'years' to go to be as completely out of the woods as I am ever likely to be - in light of the fact that complete recovery might only really be 'long remission' anyway. BUT because I have felt more energetic with a bit less of the 'deathly fatigue' I have really gotten stuck-in recently to some major gardening and physical work on our hobby farm. Lots of weeding, digging, planting. whipper-snipping etc etc. I decided I could now 'easily' manage 2 consecutive days this week rather than working 1 day having 3 off then another. In those 'days off' however I usually am reasonably active anyway- gardening at our smaller home garden and doing housework etc. Long story short (not my forte obviously) it was rather warm but I kept going and going - for 2 days and then I felt quite exhausted and just had to stop in the late afternoon. I did rest here and there under the shade of our huge Mulberry tree - along with the smart resident birds including a family of Blue Fairy Wrens - and drank lots of water - but the next day I was still quite 'done in'. However I slept for 10 hours and then awoke feeling 'great' so decided on an outing to do some pre-Christmas shopping for our Grandies - I lasted an hour and felt like I was 'sleepwalking' and disoriented - very weird and totally exhausted. Unsurprisingly all enthusiasm evaporated and I just really wanted to go home and crawl into bed !!
So just a wee word of warning for those who feel they can do almost 'anything' (again) after some signs of improvement - do take it slowly - don't overestimate your capacities as none of us can recover 'overnight' ....
This is of course not to say I won't continue to push my boundaries - I'm that kind of 'critter' and after all I had almost 'forgotten' - for a few delightful days that I was ever 'sick' ...
Blessings to you all
Rimmy
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Rimmy
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Hi Rimmy, Ahhhhhhh, the ol fool me twice thing, huh? I have fallen for that; two, three, four time even! It's so easy to do! I am so happy to hear that you are feeling better though! That is GREAT! Keep up the good work, just maybe don't push the boundaries to their limit!!!!
Thanks Melissa - now I am thinking WHO are YOU to tell me 'not to push boundaries' (LOL) - but great advice of course as I have another farm day tomorrow and Ruth is looking at the volume usage after many gardening youtube shows yesterday as I get SO BORED lying around. Still I was presented with a delicious spinach, kale and sweet potato pie by her last night to get my nutrient levels 'up' for more 'work' - which is probably 'cheaper' than having a lazy girlfriend (like me) gobbling up volume on screens ....
Yes Ruth is an excellent vegan food cook and a very good influence as I sometimes still eat dairy and fish. I 'gave up' red meat years ago but still ate chicken and fish - But just last week I've ditched the chicken and now its just fish'/dairy and veg - maybe next year ....
Yes wonderful photo!!! But Rimmy I am sorry you fell “ all of a heap”. But it sounds like you are doing better and amazingly well really. I am very impressed at your achievements!!! Blimey digging!! I can’t believe it. I hope your flare is short lived and thank you for the cautionary reminder xxxxx
Thanks Linda - I 'deserve' all I get as I take no notice of such sensible warnings when in the 'all out' gardening mood. Sometimes I get away with it and like this - sometimes not - but I always feel I don't know unless I try and we have to LIVE a little while waiting for the great 'cure' or resolution to 'descend' from heavens knows WHERE !! I am very fortunate however as I actually have minimal pain (except a few wee 'aches') just the fatigue really - so can hardly complain compared with the challenges so many here have to struggle with.
I’m so happy for you Rimmy. I think the environment you are in is doing you so much good. I’m not quite as fortunate... if I push myself it goes horribly wrong. I get the DF. But I keep on keeping on. Love and hugs xxx
Great advice! I bet it was wonderful while it lasted though, dancing in the world of the well. All those jobs done too, how satisfying. To top it all, you have Blue Fairy Wrens telling you that it won’t be long. Delightful picture. X
Lovely picture! Must be so good to feel well again and is a great encouragement. As you say you still need to take it easy but great to feel you’re on the up. Long may it continue!!!
Hi Rimmy,l love your picture of the very sweet little bird,your hobby farm and home garden sound lovely places to be.l am pleased that you are having better days,but you are so right when you say we must not overestimate our capacities ,one day Christmas shopping and l feel exhausted !Nevertheless l think you have been able to work very hard physically so that is a good outcome,just keep pacing and take rest days in between and you are doing fine, just take care.🌼
Lovely post , although I am sorry you made yourself into a pooped little pixie.
I have just come back from a horrendous clinic day and feel much the same way .
At least you got to see some wrens , the only thing that broke the pain and monotony for me today was watching two G4 security officers wheel a presumed psychopath , chained to the chair like Hannibal Lecter into the hospital ( no, seriously , the only thing he had missing was the mouth mask!).
I don't know if it is the pain , Pred or brain fog , but I couldn't help blurt out , "ooh ,quick look a psychopath!" to my OH . At which he glared with shock , and said Psychopath gave a twinkling grin ( really , I haven't made it up!).
Oh , and had a weird blood test done which meant that the Plebs treated my vials of blood like Uranium in a Mission Impossible film . Gently putting them in a lockable metal cannister of sand then carrying it at arm's length like an unexploded bomb asking people to "Get out of the way!!".
Wish I had been gardening instead. Two rests days then off again.
You try and rest too , or neither of us will survive Christmas!!!
Oh my gosh I am a monster. I’m laughing. Yet you had a bad day. It’s the way you describe it I cannot help but laugh do you forgive me? At least the Lecter person didn’t have to walk. I might consider a trolley like his for shopping trips. Xxx
In Australia zoo they have a wombat carriage. They put a lead on the wombat and then she gets in the cart and gets pulled around Maybe you could get one of those dc. Debbyx
Snap. It made me laugh too. Humour, they can't take that away from us. Blearyeyed, I'm sorry about your bad day at the hospital but you did amuse me with the description of what went on. Hope your results are good 🤞
Apart from shouting out psychopath to complete strangers and your wierd blood test did you actually achieve anything today 're medication, diagnosis?. Debbyx
A few more steps ticked with possible Behcets diagnosis , they are rather alarmed by the continuing headaches and very mad blood pressure and pulse rate .
Asked me to come back next week to see the Neurologist and get the results .
Hopefully I will not pop before then and they will finally settle on a diagnosis that will let them refine my drug regime and reduce the spikes in pain .
Eye clinic on Friday then back up to Liverpool to see them on Tuesday.
The run up to Christmas is becoming such a social whirlwind ( not!)
I will lie here and continue hugging my hot water , listening to the less than soothing night music of the tinnitus in my ear, and try and think of the positives.
Sorting out those new medications and doseage levels can not come to soon .
I don't know but I am sure it will be a box office hit!
Included, the undeleted scene of me in Darth Vader in Santa hat Christmas t-shirt
( slogan reads , I find your lack of cheer amusing) giving a fist pump to the air like Judd Nelson in ' The Breakfast Club' and crying , " Yes, score I have ulcer scars!!!" ( then feeling the pain and grabbing my shoulder in a less than triumphant way ).
The other three patients in the waiting area , exclaimed , " Yeah, well done." in glee.
I was also told I looked good in my shades by the young consultant so maybe, " the futures so bright , I gotta wear shades." should be the soundtrack.
Got to laugh haven't we , although really gently in case something pops or drops off!
Take care and have another rest day it sounds like you deserve it.
Now I seem to be so desparate for a bit of normal I am virtually chasing it down the street with a net shouting , "Come back , Normal ! All is forgiven ."
Funny what the reality of pain does to us isn't it.
I can not blame pred for the many "incidents" I have found my self in. I do seem to attract chaos and usually manage to have an audience when I do anything vaguely daft. X
Me too Debby. I often see people looking at me with a puzzled look on their face. Or notice them backing away stealthily hoping I won’t notice!!! I don’t care!!! I revel
My husband is usually seen backing away when I really cause chaos. He pretends he doesn't know me so I usually call to him just to make sure everyone is awareni am with him
We all grow up , but is is our duty never to grow old .
And it wouldn't be right showing off our " Differently Normal" side if there wasn't an audience to enjoy it would it Mateys!
It's also an added bonus if we can make our OHs squirm a bit when we act like ourselves in public I think, it's a little bit off payback for all those times they embarrass us.
Usually by loudly making comments about someone you have told them some gossip about when they are standing right next to you in a room full of people.
I suppose the silver lining of being stuck on virtual bed rest means that I will be dodging that bullet this Christmas , my daughter's will have to suffer the mortification instead, hooray!!
Many thanks - yes a very rare 'long' sleep - almost worth the prior exhaustion for - and I do understand how fantastic to be able to have that when your body (and 'soul') really need it most ...
I went to the doctor for my 2 week check up after diagnosis of pmr and said about my lack of sleep. Even took OH to back this up and he suggested I eat kiwi fruit before bed!! I bought share in the bloody fruits only to find the only thing it did was make sure I went to the toilet even more!! I have tried virtually every type of sleep.inducing remedy available and still no luck.
That's a shame - 'Kiwi fruit' is a new one on me and I am (originally) a 'Kiwi' - in fact that would give me indigestion ! - It just shows what works for one person may be very individual. I found the over the counter antihistamine derived sleepers helped when on high doses of Pred - but i'm sure you've tried all that ...
I have tried some but never got much relief so stopped working my way through them. Might neednto try again. My doctors latest remedy was to up my amitriptyline from 150 to 200mg. This gives me a time slot of about 30 mins where sometimes I fall asleep. If i miss the signs I miss the slot!! Must go and look at the antihistamines again.x
We watched a 'Trust Me I'm a Doctor' programme quite a while ago where they gave insomniacs 2 kiwi fruit an hour before bedtime and it helped! They are said to contain serotonin. I have one most nights in the hope of better sleep, but I'm not sure it works for me and I can't face 2 - they're so unripe and like bullets when we buy them in the UK, that I have to leave them in the fruit bowl for a month or more and then often they don't ripen! Please can I come and live on your hobby farm?
Ha Ha !! - we don't grow them I'm afraid but they can be bought locally (in South Western OZ) and are usually not very hard - or as unripe as you describe and ripen quite easily. If they contain serotonin they would likely help some people I'm sure !!
Heron found that taking a calcium tablet before bed with some yoghurt (I think it was both) helped her sleep better - partly not waking because of rumbling stomach and partly calcium. There was sense in that hot milk before bed that granny recommended... Magnesium is also said to help.
I tried magnesium spray but started at same time as my anti depressants was upped so wasnt sure which was causing the tiredness slot. Will get some more and try again. I will also try the yogurt with calcium as well. I just need some sleep. 3 hours out of 24 is not enough!! Debby
It could be that. I generally tired about 2 ish so maybe that's the time to have a nap. I always feel guilty sleeping in the day time! I will try an afternoon sleep tomorrow and see it makes any difference. Thanksx
No guilt! You are owed the sleep - who cares when as long as it works. That is our body's natural rhythm - and people all over the world have siestas or the equivalent. We stayed with people in the south of Italy over xmas and new year some years ago - lunch was at 2-2.30-ish followed by a snooze before returning to work. He was a doctor - insisted on it.
Lovely post from you Rimmy. Love your piccy. Your little wren is so sweet. I know where you’re coming from. After a weekend away recently, dancing and excursions out, I felt as if I’d been run over by a bus a few days later. ok now though so onward and upward!!
How fun to be well.(if even for a few hours) Your gardening sounds heavenly. Winter approaching here. Gray and gloomy ❄️❄️❄️ I'm a gardener and I hope someday to be able to do that all again. Kind of hard to imagine.
Sad for you , but feels good to validate me! As this journey continues posts like this are so important ✔️
That describes where I'm at perfectly. It's good to know that given the circumstances it is 'normal' annoying, but normal. Thank you for sharing your experiences it really helps others who are dealing with PMR/GCA.
I’m in the same situation, up here in upper Michigan we just had a good dumping of heavy wet snow, two days of wrestling with the shovel and snowthrower....didn’t feel too bad, felt good to get exercise, but the next day, and today....feeling pretty depleted....but I knew it was coming...can’t get away with it!! Not bad though, what the heck, gotta move...currently at 8mg and it’s been a year and a few months since the PMR diagnosis....
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