The Lighter Side: 'This, Too, Will Pass' - as can... - PMRGCAuk

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The Lighter Side: 'This, Too, Will Pass' - as can AIDF (Auto Immune Deathly Fatigue). Have Faith.. ;-)

markbenjamin57 profile image
87 Replies

Greetings All, whoever and wherever you are in the world - and not forgetting the Three and-a-half of You Lot in Welsh Wales, 'look you' ;-) :-D

[Seriously, PLEASE NOTE: This Post is intended as a mainly Light Hearted one - both in the PMR GCA context and recent developments on this Forum. At the same time, I will offer my thoughts about the recent Forum Storm, for better or worse. If you find this Post too long and / or not relevant, or if you disagree with the sentiments expressed in it, just pass-it by and tune-in to one that suits you better in terms of your needs. We all have an equal choice].

Well, what a positive and energising week despite the recent ravages of PMR! My News In Briefs (sorry, I meant 'Brief' - no smutty jokes please):

After a miserable cold, wet, windy, dark and physically inactive January, feeling cursed with the almost daily dreaded DF (Deathly Fatigue) and wiped-out energy-wise mentally and physically for weeks on end, I am pleased to have finally re-integrated with Society as we know it. Ohhh...

Day 1: pack-up and sluggishly (due to residual DF) depart the Mansions in WSM, head for the Dorset Coast to visit my retired Twister to do some Odd Jobs there (some of them very Odd). A 2 hour car journey plus all the logistical stuff at each end. You probably know this type of usually 'Normal' challenge when already coping with depleted energy supplies..

Day 2: another 2 hour motorway trip (each way) to visit the very nice and hospitable PMRGCAuk Surrey Support Group (courtesy of Shirley - thanks) to give a Talk about my PMR Journey and offer an alternative / psychological angle on coping with the Emotional Side of our types of chronic illnesses. Result? Phew - at least I didn't get chucked out for larking around a bit and having some fun with that Surrey Lot. In fact, it was a super day out for me, and I hope the same for at least a few of the Surrey PMR GCA Lot.

Days 3-5: Back to the stuff of physically demanding Home Improvements for the Twister: including messing around in the roof and up ladders, doing various electrical stuff, hanging pictures, mending fences, putting-up new curtains / poles and all things DIY. And - all of this helped by milder temperatures and a bit of exposure to some un-seasonal Sunshine and natural Vit D* thrown in. *Maybe that's one Clue in the coping with DF equation? You tell me..?

Day 6: pack-up and return to the Mansions expecting to be totally Kna****ed after a full-on week physically and mentally. But, to my surprise, feeling only 'nicely' tired and still relatively full of energy despite a demanding week after being inactive for a more long and tedious month than I can remember on my 4 year PMR journey (even though now at 2 mgpd Pred). So, 'Job's a Good Un' as we say in Zummerzet.

My Conclusion to a relatively energetic and symptoms-free week (in the PMR GCA / DF symptoms context)?

Maybe any or all of: PMR subsiding disease heterogeneity, adrenal function waking-up in fits and starts, some positive external physical / mental stimulus, milder weather and natural Vit D sourced therapeutic sunshine have helped me emerge from a nasty period of DF. Who can know? Either way, it's good to be feeling more like Normal. We live in Hope...

The only, and a sad Downside to my week was to see (and reluctantly get drawn into) the emotional turbulence and unhappiness experienced by some of Us Lot on this usually lively, happy, eclectic and diverse Social Health Forum - which includes and embraces Members from all walks of Life and in all types of Health circumstances. All I can say is that I hope that the Forum Administrators find a way to manage and reconcile the recent conflicts of opinion around the thorny issue of the Content and Style (i.e. on / Off Topic?) of some Members' input in a fair, objective and sensitive way for all concerned. We will see...

Like many of Us Lot, I sign-in every day and like to keep abreast of Members' Posts, Questions, Rants, Pleas for Help - whether On / Off Topic, and all shades in between. For me? I simply dip-in to and get involved with those that I like and can relate / contribute positively to: or swiftly move on, usually without comment if I don't. That's my strategy, for better or worse. And, for what it's worth: my approach is 'Tolerance is Key' to maintaining a balanced and healthy but diverse Social Health Forum Community.

So, that's nearly it Folks. I sincerely hope that the seven-and-a half of You Lot of my alleged dedicated (if slightly Bonkers?) Followers who have pleaded with me NOT to leave this forum will be encouraged to know that I am still here - and intend to be for the foreseeable future. All I can say is: 'Careful what you wish for..' :-D

But for those of you who don't know me and / or don't relate: please pass me and my Silly / Serious Ramblings by - and I wish you all the Best on your PMR / GCA Journey. To quote a popular saying: 'Life is too short...'.

Best wishes All - and try to keep smiling on the Journey

'Uncle' MB ;-)

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markbenjamin57
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87 Replies
Nuff1 profile image
Nuff1

Keep on Trucking!

markbenjamin57 profile image
markbenjamin57 in reply toNuff1

Thanks Nuff, you bet.. ;-)

Daisychain12 profile image
Daisychain12

You are my hero. ( waves weakly at Mark across sea of DF) xxxxx

markbenjamin57 profile image
markbenjamin57 in reply toDaisychain12

Ohhh... I feel very flattered. Try to keep your chin up Linda, things can and probably will get better. Have faith.. ;-) xxx

Blackcat1M profile image
Blackcat1M in reply toDaisychain12

DC I so enjoy reading your news, so please do not stop, and best wishes to you, from a newbie

markbenjamin57 profile image
markbenjamin57 in reply toBlackcat1M

Welcome Blackcat, I agree :-)

Yellowbluebell profile image
Yellowbluebell

Glad you are still alive after such a busy week. I agree with you about how we view different posts and I just ignore those that i am not interested in or have nothing useful to say on a subject. I hope things can go back to some sort of normality soon. Take care because your busy week may just come and bite you in few days.xx

markbenjamin57 profile image
markbenjamin57 in reply toYellowbluebell

Thanks Debby. We'll see... ;-)

sennetta profile image
sennetta

I think there are considerably more of us than 3.5 in Welsh Wales!

markbenjamin57 profile image
markbenjamin57 in reply tosennetta

4.5? Only guessing... ;-) x

Sorop profile image
Sorop in reply tomarkbenjamin57

+ 1 😀

markbenjamin57 profile image
markbenjamin57 in reply toSorop

Mmm.. I hope You Welsh PMRGCA Lot aren't trying to boost your numbers by including a few heavily disguised sheep here and there. I've heard there are quite a few in Wales .. :-D

Sorop profile image
Sorop in reply tomarkbenjamin57

🐏🐑🐑🐑

markbenjamin57 profile image
markbenjamin57 in reply toSorop

Baaaaa.... :-D

EdithWales profile image
EdithWales in reply tosennetta

I hope that includes me and remember we have sadly had a defection from one Mrs Nails to England🥂🥂

Hirwaen profile image
Hirwaen in reply tosennetta

Well, perhaps I can boost the numbers to 4.5! IMI Ruthin!!!

sennetta profile image
sennetta in reply toHirwaen

Well I hardly think anyone is going to admit to being the same shape as a sheep! But who is so small he or she can only amount to being .5 of a person?.....or would that be a reference to the half brain of someone on pred?

Rimmy profile image
Rimmy

Thanks Mark and agree the DF is a real 'bummer' - I am REALLY looking forward to a future without that haze which is also plaguing me more often than I would 'like'.

Re this site I also concur that we have the capacity (well most of the time when our 'faculties' are functioning in a reasonable way ha ha !!) to read or not read any posts and this 'choice' and diversity is surely one of the invaluable aspects of such a 'meeting place' - with lots of room for a spectrum of perspectives. I really appreciate the clinical/medical information as well as the experiential knowledge and perceptions of all our contributors - it is THIS mix which makes HU 'attractive' to me - and in the 2 years I have been here there have been very few examples of what has been referred to as 'flaming'. SO hopefully our old 'bounce' comes back soon ....

Best wishes

Rimmy

markbenjamin57 profile image
markbenjamin57 in reply toRimmy

Thanks and well said Rimmy - I agree. Let's hope that the Forum Admin process gets to grips with and smooths-out the recent probs soon. In some ways, they (all volunteers?) have my sympathy since this forum has grown so quickly and is probably now quite difficult to manage in terms of regulating the mix of content / appropriateness etc.

We'll bounce back - no worry ;-)

Hollyseden profile image
Hollyseden in reply tomarkbenjamin57

I hope we do bounce back. I feel sorry for the admin team too. As you say, lot of work for volunteers.

Glad your DF seems to be behaving too. Long may that last.

markbenjamin57 profile image
markbenjamin57 in reply toHollyseden

Thanks Holly, fingers crossed ;-)

Blearyeyed profile image
Blearyeyed

You have had a busy work filled week!

Hope you get to relax this weekend and get to spend a few quality hours with Tedski at Benjamin Towers so we can get to hear about some of your more colourful antics with your partner in crime again very soon.

Big hug from Welsh Wales , Bee x

markbenjamin57 profile image
markbenjamin57 in reply toBlearyeyed

'Cwtch' (?) to you too Bee. There's lovely! :-D

scats profile image
scats

I agree totally with your summing up Mark, wise words (again?!)

Managed to read the whole post without groaning, now that's a first!

All best wishes to you.

markbenjamin57 profile image
markbenjamin57 in reply toscats

Ohh scats - not groaning? I must be slipping... ;-) :-D

scats profile image
scats in reply tomarkbenjamin57

Sorry, I'll try harder next time!

markbenjamin57 profile image
markbenjamin57 in reply toscats

:-D

-LJ- profile image
-LJ-

Uncle....can you tell me if the DF is since you finished meds? I was down to 1/2 prednisone a few weeks ago and just sort of tested the waters...every other day...then off completely. I feel pretty good, but am tired some days. Does that continue for some time after you quit prednisone?

I’m happy to have missed the drama.....

Thanks!

markbenjamin57 profile image
markbenjamin57 in reply to-LJ-

Well, LJ, from what I know, the DF is often a component of AI diseases like ours, aside from the other symptoms. As the Aunties and others say, it can also be amplified by any number of other things including over-exertion, reducing the Pred too fast, Stress, even the weather.

Yes, it seems that the DF can wax and wane, even after coming off the Preds - and whilst the body is adjusting to it. Like you, I've had a couple of periods of feeling marvellous both on and off of the Preds, so I think it's a roll of the dice sometimes.

Blackcat1M profile image
Blackcat1M

Hi I am a new member to this forum, but so enjoy reading your news, so continue.

markbenjamin57 profile image
markbenjamin57 in reply toBlackcat1M

Will do, thanks ;-)

Longtimer profile image
Longtimer

Glad to read this, always cheers me up...except of course about the dreaded DF.....say hello to Tedski….onwards and upwards!.....

markbenjamin57 profile image
markbenjamin57 in reply toLongtimer

Tedski says hello back. Onwards and.... sideways... ? :-D

I too have been energised this week, have spent a lot of time outdoors gardening, finding I can shovel manure nearly as well as before PMR or is it because as we are holidaying next week and to get us in the mood we have broken the no alcohol rule!!!!

markbenjamin57 profile image
markbenjamin57 in reply to

My dear ex-wife is a keen gardener and swears by putting horse manure on her rhubarb. I told her it'll probably taste even better with custard on it.. :-D

in reply tomarkbenjamin57

Gosh I didn't know that, but does custard contain vit D? Come to think of it does horse muck? 😀

markbenjamin57 profile image
markbenjamin57 in reply to

:-D

karools16 profile image
karools16 in reply to

You try it and then tell us???????????

in reply tokarools16

I've got three large plants, how much custard should I pour over them and will it ward off the slugs?

Mstiles profile image
Mstiles in reply tomarkbenjamin57

Ha! Didn’t see that one coming. Thanks for making me laugh.

markbenjamin57 profile image
markbenjamin57 in reply toMstiles

Ha ha Mstiles. I pinched that one from Les Dawson... :-D

Zofitmogelijk profile image
Zofitmogelijk

Thanks for making this choice to be part of the team again. let us hope we will built up the positive flow again, where you a.o. made a start with. So you did over hours and it did not harm you, must have saved some spoons in January. Hope the PMR thing will soon be in the past for you.

markbenjamin57 profile image
markbenjamin57 in reply toZofitmogelijk

Thanks Aletta, 'fingers crossed' ;-)

Koalajane profile image
Koalajane

So pleased to be reading your post. Hope the DF stays away. X

markbenjamin57 profile image
markbenjamin57 in reply toKoalajane

Thanks jane. Well, no guarantees, but this week was a good start..

Sandradsn profile image
Sandradsn

So you remember what 'feeling normal' was like!😂So on 2mg apart from the df do you get aches?

Enjoy the sunshine I'm sure it makes us feel better,the hope of spring on it's way.

Glad you've had an adventurous week🙄

markbenjamin57 profile image
markbenjamin57 in reply toSandradsn

On 2 mgpd Pred, often still some low level pain and stiffness. But, paradoxically, less so even though I've been working hard physically. I put it down to getting out in the warm sunshine and soaking-in some natural Vit D - and doing enjoyable stuff generally ;-)

katiemills profile image
katiemills

I'm glad you decided to stay on the forum and glad the DF hasn't wiped you out after such a hectic week .

markbenjamin57 profile image
markbenjamin57 in reply tokatiemills

Thanks Katie - fingers crossed we will all continue happily after the storm. I'm sure the better weather helps with DF...

Charlie1boy profile image
Charlie1boy

Hi Mark.

Glad to see you are back in business!

Paddy

markbenjamin57 profile image
markbenjamin57 in reply toCharlie1boy

Ta Paddy. Just couldn't stay away for long, although I was a bit wary about continuing to write the silly / off topic stuff after the recent furore ...

Joaclp profile image
Joaclp in reply tomarkbenjamin57

Don't lose your literary style due to the furor! After all you published a well-received book. It is all too sobering. I can't write more now as I have DF myself. 😊 JoA

markbenjamin57 profile image
markbenjamin57 in reply toJoaclp

Thanks Jo. Try to Rest and Relaxxxx... This, too, will pass ;-)

borednow profile image
borednow

Welcome back (even though you never really went, thank goodness). But no mention of Tedski, nothing, zilch. Don't need an essay, just a brief acknowledgement of his existence. I am devastated.

On a more relevant note, did you manage to come off the preds but then had a bit of a blip? Now see you're on 2mg and presumably on your way down again. Any helpful tips on the last hurdle would be very welcome. Currently dodging between 2 and 2.5mg - no serious side effects so far but feel as if I'm walking on broken glass!!" There's a song about that .................

markbenjamin57 profile image
markbenjamin57 in reply toborednow

Tedski? Who's he? OOHHHH... I remember now. I locked him in the freezer and totally forgot about him whilst I was away. Better thaw him out in the microwave and warm him up... :-D

Yep, I've had a couple of holidays from the Pred lasting a few weeks - and felt super. But.. back on 2 mgpd currently because the symptoms (pain / stiffness) started to creep back slowly - especially during the cold, damp winter. I think the wisdom is that, even at these low levels, it's a case of Slowly Does It with Pred reductions - even if it's tempting to sprint to Pred Club Zero. Been there and got the T shirt.. ;-)

JulieR2 profile image
JulieR2

As always Mark the upbeat and slightly bonkers tone of your posts brighten my day:) and from the replies many others! I don’t know if you are going on tour in Wales now that the cost to enter has been removed! But count me in if you are😀

markbenjamin57 profile image
markbenjamin57 in reply toJulieR2

Thanks Julie - I try to do my best for You Lot. Blimey - On Tour? 'Uncle MB has entered the building..' Elvis would be proud. Mmmm, haven't visited Wales for ages although I can see it from WSM.

JulieR2 profile image
JulieR2 in reply tomarkbenjamin57

Well you better come quickly as we are about to be gentrified apparently since bridge tolls have been removed😂 Wenglish will be a dying language. Pit ponies are already on the endangered list if not extinct and goodness knows what could happen to leeks and daffodils😂

markbenjamin57 profile image
markbenjamin57 in reply toJulieR2

Wenglish - Ha! I'll be over soon as long as I don't have to give a talk in Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch. I think if I try to enter that place name in the Limo's Satnav it will blow up! :-D

stellafmdm profile image
stellafmdm in reply tomarkbenjamin57

RReminds me of my sister who could say that long name faultlessly every time. (She didn’t have PMR or Gca so no Pred to help or hinder her!) As for me, no chance especially with Pred Head!

VAl4266 profile image
VAl4266

Well thank goodness for that mark, sanity, well done very relieved to get your post.

markbenjamin57 profile image
markbenjamin57 in reply toVAl4266

Thanks Val. But Sanity..? MB..? All I can say is I must be slipping... ;-) :-D

Jackoh profile image
Jackoh

Glad that you were active last week Mark and up to now haven’t suffered for it. Sometimes it doesn’t all make sense does it ? But for all of us it’s onward and upward. Good to hear your news. 😀👍

markbenjamin57 profile image
markbenjamin57 in reply toJackoh

Thanks J, so far, so good. I'm sure there's a psychological element in the DF / no DF equation alongside the physiological ones. I agree, sometimes a lot of PMR / GCA things don't make sense. But Hey ho, that's Life!

Mjhollywood1 profile image
Mjhollywood1

I was feeling very down. Tried of being tried !!! I just want this over !! But today I will go to the gym and spinn my ass off!!!! I need to get back to the gym everyday !!!!start eating no breads follow a green diet. (Not giving up wine ) hoping this is the year it burns it self out !! Back at 2 mil (predsone) never made it to one !!! And today I will become a blonde !!!!😉was a red head 👩🏻‍🦰. Thinking positive. And it 85 in Hollywood Fl. And no ✈️ For me off for 3 days going shop drink wine shop drink more wine

markbenjamin57 profile image
markbenjamin57 in reply toMjhollywood1

Shop drink wine shop drink more wine. Sounds good to me Mj.. ;-) :-D

bunnymom profile image
bunnymom

I wish I had a brother like you. What a good man you are! I am at 7.5 about the same as last year after a flare due to shingles in the fall however I find I am able to do much more. I was painting while on a ladder with no effects and I'm able to walk farther without hitting a wall. I am assuming I'm getting better. I would say I'm at 70% but still get pred head but it's better. I just remarked to my husband that after 3 years we've learned to cope. I expect some fatigue as I move to lower doses. We will see. The sun is shining this morning. Hurrah!

markbenjamin57 profile image
markbenjamin57 in reply tobunnymom

I try to do my best bunnymom. I know what you mean about getting 'stuck' at a level of steroids, or having to nudge back up in some circumstances. I think the main thing is to look at the bigger picture and trust that things are getting better generally, even if PMR / GCA are a bit of a roller coaster. And yes, some sunshine helps in the process! ;-)

Seagu11 profile image
Seagu11

GCatatude

GOOD_GRIEF profile image
GOOD_GRIEF

Thee be thee and we be we, MB.

in reply toGOOD_GRIEF

GG.

markbenjamin57 profile image
markbenjamin57 in reply toGOOD_GRIEF

Can't argue with that GG..

GOOD_GRIEF profile image
GOOD_GRIEF in reply tomarkbenjamin57

And together we shall all abide.

stellafmdm profile image
stellafmdm

So glad you are back MB! I so enjoy your humerus take on PMRgca!

markbenjamin57 profile image
markbenjamin57 in reply tostellafmdm

Thanks Stella. Do you know, I started writing silly stuff here about 3 years ago, to cheer myself up when I was semi crippled with PMR. After my first Post (John Wayne..), I really thought I would get told-off by Admin for messing around and not taking things seriously enough. The rest is history... ;-)

Mstiles profile image
Mstiles

Love your posts and your way with words. Glad you’re back! Also so glad to read your post about being successful in participating in life! It gives me hope. ❤️

markbenjamin57 profile image
markbenjamin57 in reply toMstiles

Thanks Ms, Hope can be a very powerful and invigorating thing. Take it from me.. ;-) x

Hirwaen profile image
Hirwaen

Good man, delighted to know you have seen sense and stayed with us all, hurray!!!!!

markbenjamin57 profile image
markbenjamin57 in reply toHirwaen

Thanks Hirwaen. But all I can say is: MB..? Staying around with YOU LOT..? Good sense..? Hurray..? Ohhh... there's no Hope. As Captain Frazer in Dad's Army would say: "We're all DOOMED!!"

Keep smiling on the PMR / GCA Journey.. ;-)

Hirwaen profile image
Hirwaen in reply tomarkbenjamin57

'They don't like it up em', do they!!!!!

markbenjamin57 profile image
markbenjamin57 in reply toHirwaen

Private Frazer to Captain Mainwaring: "Och Aye, the Noo!".

Ohh.. this thread might be (once again?) degenerating into the territory of being TOO SILLY and Off Topic for some. But what the heck.. ;-) :-D

Hirwaen profile image
Hirwaen

'Good point well made' signing off for now!!

Grants148 profile image
Grants148

So pleased you are still posting Mark,l would never not read your posts,l hope there will be plenty more.I am also relieved that January is over ,l look forward to the lighter evenings .The winter months certainly do not help PMR,I am still on 5 mg. of pred.,and a bit reluctant to lower the dose just yet. Hope that Tedski will soon come out of hibernation,he must have been behaving himself lately !Take care Mark,and thanks for your informative and humourous posts .

markbenjamin57 profile image
markbenjamin57 in reply toGrants148

All part of the service Pat. My default in the stuff wot I write here is to either to try to make You Lot smile or (occasionally) bring a more Reflective side to the proceedings.

As you say, probably good to stick with the current Pred dosage until or unless things warm-up a bit. I'm doing that too. No rush to do anything until the time is right...

As for Tedski? All I can say is 'watch and wait' for more adventures and antics.. ;-) :-D

Best wishes and enjoy your weekend.

MB

jannie21 profile image
jannie21

Hi Mark, bit late but so glad you are still here, by the way I remember "John Wayne" lol...….

markbenjamin57 profile image
markbenjamin57 in reply tojannie21

Thanks jannie. Wow, the John Wayne story?! My first (tentative and silly) Post here 3 years ago. How time flies.. ;-) Thank you for remembering.. x

Hirwaen profile image
Hirwaen

DELIGHTED!!!

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