Greetings and Happy New Year to all Poly-my-Lingerers and Pred Playmates.
As some of You Lot know, I like to think of myself as being a bit of an 'Action Man' generally, and despite enduring the ravages of PMR for the past 2 years. All considered, I feel fortunate compared with many here.
As some of you might relate, it can be difficult to gauge exactly how much we are limited by PMR - or not. On a slightly more serious note, some of you suggest that the experience of a chronic and unpredictable illness like PMR (and GCA) - and the associated stress and uncertainties - can leave one feeling in a perceptual 'Twilight' where we can't always have an objective perspective on our capabilities.
So, here's my Scenario (today), for your comments:
After feeling a bit 'flat' following the combined excitement (ha ha!) and anti-climax following Christmas and the New Year, but in a reluctant spirit of wanting to Get back into Action, I agree to replace the worn-out and leaking felt (mineral sheet) roof covering on my dear and long-suffering ex-wife's treasured garden shed. (I have come to realise that Sheds aren't exclusively a 'Man' thing..).
It's 4 Degrees C. in WSM UK, bright skies, but with a blistering wind-chill making it feel closer to minus 4. With PMR, Common Sense and Better Judgement would say 'don't bother - wait a while'. All the same, I wrap-up warm, prepare tools and get down to some serious, physical Outdoor DIY Business. My logic? Better than sitting at home, and being bored and inactive..?
The Process / Stages:
1. Remove old shed roof felt (6 trips up and down ladder, Health and Safety / Working at Heights Rules carefully observed).
2. Unload and roll-out new shed roof felt weighing 22kg. Cut into appropriate lengths on hands and knees with my 'special' sharp knife. Nose dripping like a tap throughout - oh well...
3. Lift up new felt onto shed roof, set out and align, tack around 4 edges (56 nails, give or take a couple that I dropped down the side due to freezing fingers), apply sticky black Bitumen sealant to overlaps. Approx 6 more trips up and down the ladder - and a bit of cursing in between when I nearly knock-over a 5 litre tin of bitumen due to being a bit PMR-stiff and cranky.
4. Simultaneously, puff on a celebratory cigarette or two (defo a Man thing, even if not smart or clever), face towards the weak but discernible warmth of the Winter Sunshine, and think to myself: 'Well, MB, things can't be too bad if you can still do this type of stuff at age 60 with PMR - AND you're getting some free Vit. D supplement in the process'.
5. New shed roof felt secured, all debris cleared up, and with a sense of 'Mission Complete'. Ex-wife endearingly grateful, despite noting that my alignment of the roofing felt is 1mm different from one side to the other. Oh well....!
Total time for physical activity: 4 hours virtually non-stop. Feeling 'nicely' kn******d, but with no injuries - and, more important perhaps (?), a Sense of Achievement. Verdict: 'Job's a Good-Un!' - and great for the morale
So, maybe, here's the 64 Dollar Question for some of Us Lot here. Are we limited more by our illness: or by our fears, anxieties and perceptions of, or around it? Clearly, this is a very personal and complex question, and will depend on individuals' contexts.
Just to say, I proved myself wrong today on the 'Shed' Mission. After starting out with a feeling of inertia and reluctance to do anything physically demanding due to my PMR symptoms, the cold weather and a few other things, I proved to myself that I COULD stretch myself a little - and ended up with a great Sense of Achievement which was worth the gamble and effort.
What do you think? Answers on a postcard please?
Happy Days and best wishes to all here.
MB
Written by
markbenjamin57
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Good evening mr M B I understand so very Well that you want to go back to “normal” life, and the fact that you can function with 2 Mg or perhaps in the meantime less Pred. And I now How Good it feels to achieve things but are you not afraid of doms. My plank bridge is bad and Needs renewal so I removed 84 screws today ( by lack of a robot) and put the woods to a pile to burn later and stopped I really really hope tomorrow you still feel spring chicken and 2018 will be the Year you leave pmr behind, Aletta
Thanks Aletta :-). Yes, it's easy to forget what 'Normal' is after 2 years with PMR!
Strangely, I feel better after doing some physical work yesterday. I think the sunshine helped too (Vit D and bright daylight). Now at 2 mgpd Pred I feel less fatigue than before, although I know it's a slow journey to get to Zero. Yes, fingers crossed that 2018 will better for all of us here.
Like you I have tried hard to continue with as much of my life as possible and to minimise the interference that PMR/GCA wants to have in my life. Despite being a day or two older than you, I consider myself extremely lucky to still be able to work (being a retail consultant means that I can rest between projects and recover (though the one I started at the beginning of December is a full on 40 hours a week and three nights away from home and is going to go on until the end of April but keeps my mind off how I'm feeling especially since it is working with some who are young enough to be my legitimate grandchildren) and so I approach everything with a can do attitude until the point at which I find I cannot do and so take a break. Yes I get the headaches, yes I have extremely stiff muscles, yes nerve inflammation has affected both my back and paralysed half my face (luckily that has more or less cleared up and quicker than the average) and there are times when I am just absolutely exhausted but I am not going to be anything other than positive.
On top of working I am also in the final stages of renovating the house I bought 23 years ago which is a listed building built by the local farmer next to the farmhouse (just a smaller version of it) and between the pig sheds and the stables in 1742 and I am determined to enjoy it when it is finally done but will only complete it if I can continue to work to generate the funds. Like you Mark I have to keep proving to myself that there is still much that I can do and probably more than I think
If there is one thing I have learnt from the group of people you call the "aunties" in this forum (and there are in fact many more things where they and others in this forum have helped my understanding, knowledge or how to deal with the unknown) it is that you have got to have a positive approach as, no matter how long it takes, at some stage you are going to feel much better and free of the most debilitating bits (and I know many of you have to bear other issues than just the terrible twins) that plague us
So keep buoying us up with your wit, your anecdotes and your sense of fun because that and being part of this community is what is going to get us through this
I remember your story from way back - you sound pretty resilient to keep going with work and house projects through it all. I agree, keeping a Positive / optimistic attitude can help in the PMR process - although not always easy when feeling so wiped out!
And yes, having a bit of fun can be one of the best therapies of all!
Due to the recently weather that we’ve had here in the Northeast US, about 30” of snow has piled up on sunroom roof, more is due sometime tomorrow! Sooo, out I climbed, tools n shovel in hand. Well, I got to do 1/2 the job. I will continue in the morning......persistence pays off. Hope the prednisone kicks in n gives me a boost. We are a tough lot, this prednisone n I !
You hit the nail on the head Mark (no pun intended 🤓) I find if I push myself through the pain and then rest for an hour or two I feel better for it. I haven’t taken Pred for the last six months so pain is more or less constant, but I feel healthier not taking it. Four years now this damned disease and no let up, and as for free vit d my gp stopped them because apparently they crystalize in the kidneys. 🙄
So well done on completing your task and a happy new year to you.
Thank you Mark and Happy New Year. I feel the need to post an 'I'm feeling better' message today. I had flu for almost the whole two weeks of the Christmas break and Saturday was my first real day out. Set out with trepidation, and armed with cough pastilles, to take the 10m trip into Brighton by bus. Dire weather predictions were confounded and the sun shone all the way along the coast. As the day progressed I felt better and more energised than I had for a long time. Sometimes just making the effort, whether it's repairing the shed or getting on the bus and going somewhere different, seems to bring its own rewards. I might be tempted to try a further pred reduction in a few days if this feeling of well being continues.
Good job! I agree, pushing ourselves gives us a sense of accomplishment. Acting sick makes us feel sick! Yesterday I completed an hour low impact aerobics class called Bombay Jam. Very proud of
Thank you for writing your story. I think that sometimes we forget to post about when things are going well. We tend to write when we are full of questions and worries or to vent when needed but it is good to remember that we have good days too. As my time with PMR progresses and the activity level settles down some, I too find that I can do more and more. Perhaps it's because I have a better match between medication and what I actually need, perhaps I've learned to pace a bit and to listen to my body better. Either way, I'm happy to report that I am not finding this brutal cold snap we are experiencing here as hard on me as I anticipated and I managed to undecoreate the house and clean up from Christmas without major incident. ( lots of up and down stairs, stretching, box carrying etc). Tired and sore, but babied myself a bit that evening and back on my feet in the morning. Keep up the good work and enjoy the sunshine when you can!
I can understand why so may of Us Lot look to this respected forum for advice and support through the tough bits - I guess that's its main purpose?!
But I agree with you - it's also nice to hear or post success stories about positive progress to balance-out the more serious stuff here. As I've learned from painful experience, PMR and GCA really can be a Roller Coaster of a health journey for many of us - not just physically, but emotionally too.
Maybe 'surviving' the cold snap, flu, stress etc without going under completely is a good sign of gradually getting back to Normal (whatever 'Normal' means)?!
Thanks for your kind thoughts and 'Hear-hear' to some sunshine and hopefully a warm, bright and optimistic Spring and Summer 2018!
My ex (Rose) and I have come through a long and difficult family journey (too long-a-story to tell here) but we are still close through thick and thin, and we watch out for each other. I'm equally grateful for that
Something different, even if knackering, is far more exhilarating than the usual mundane stuff we HAVE/SHOULD/OUGHT to do so hopefully the reenergisation (a word sounding as if it comes from across the pond!) helps keep the 'I wonder if I can do that' thoughts at bay?? Maybe. We had a v quiet Christmas made up for with small grandchildren for 5 days so, along with a glass or two and a sneaky fag ( thanks MB, I thought (I was the last outcast in the world), I feel pretty good and tapering at the same time so... more answers on a postcard please....
Something to do with Positive Motivation / Challenge and its effects on the Mind and Body maybe?
From my amateur experience, the broad but often mis-interpreted definition of 'Stress' can be as much a positive, motivational factor as a negative one, in context. I'm sure those sleepy Adrenals like a bit of (the right kind of) Excitement to get them going again!
Glad I'm not the only sneaky-fag-outcast here (but don't tell The Aunties..)
Well markbenjamin57 , at only 56 I'm finding lots of things hard to do.
Climbing the stairs to my 2nd floor office is hard work first thing in the morning, but I won't take the lift, have to keep trying.
I also try and get out got a lunchtime walk, 2-3 miles.
Sunday was good, I was at the range and have been using a rest to support my rifle, but this weekend I managed 10 shots off hand, first 5 were good, then a couple of bad shots so over all a good day.
Today I had the day off, washed the MX5 and took it out for a spin, not easy getting in and out, but the grin factor was well worth it.
I think I'm limited by PMR more than myself, but it can be hard to tell sometimes!
Keeping a positive attitude has helped me over the last year, that as well as family, friends and this forum and that, for me, is a big thing.
Well done Julian, especially about the Grin Factor with your MX5 - despite the difficulties in squeezing in and out of it. As a Petrol Head too, I know that MX5's are renowned for the Fun factor - and one of the best modern sports cars regardless of price, technology or power output!
I agree, trying to keep a PMA helps on the PMR Journey - keep it up!
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