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'
[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..'
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
Written by
markbenjamin57
To view profiles and participate in discussions please or .
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
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 ..
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?
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 ....
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.
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.
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?
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.
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!!!!
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.
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
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 ...
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
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 .................
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...
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..
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😀
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.
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😂
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!
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!
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. 😀👍
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!
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
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!
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!
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...
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. ❤️
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!!"
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 .
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..
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
