Acceptance of the mighty PMR
Posted , 12 users are following.
Partly in response to Flipdovers "what I hate" thread (Hiya Flip), I thought I would go the opposite way and start this conversation.
I have been off sick for one year now. Dx'd in December '15, started on 25mg and now sitting on 10mg for a few weeks before tapering again.
I was wondering if anybody else feels as I do. I dont really mind having this thing. Dont get me wrong, I would much rather it wasn't hanging around, but as I've always been fit and healthy, I knew that as I reach 60 (this Dec) that I would probably be succeptable to one of the serious illnesses. Well it hit me bad when it did come, but after 9 or 10 months on pred I seem to have a bit of control over it. There are so many things that I could have got (and still could I know) that this one is one of the more favourable ones to have got.
It has changed my life and outlook completely. I try not to look on the negative things and try to see the good in situations now. OK, I cant do a lot of the things that I used to enjoy, running was something that was akin to meditation for me and financially we're in a bit of a pickle but it has given be time to re-adjust and re-align myself.
I still have my moments when I get fed up with some of the pains and sleepless night etc.
I dont like being on steroids but the alternative is far worse. When I remember how it felt, physically and emotionally before my diagnosis when I thought I was going mad because they couldn't tell me what was wrong, I find myself sitting, because of the fatigue or aches, just thinking of what it was like a year ago and count my blessings.
Still can't do a press up but I will one day.
Stay happy people and dont go to Flips thread and say that you hate that sanctimonious idiot Tastyron.
Ron
2 likes, 19 replies
constance.de Tastyron
Posted
Hallo 'Tasty' good to hear you are getting on OK. Nice to just sit and 'accept' what can't be changed. Life's too short - enjoy!
whitefishbay Tastyron
Posted
I too can see the upside. I could have got something much MUCH worse. I work full time and did before I was diagnosed (but left early). I am so glad I am able to work as we would have to sell our house ... I try to exercise everyday by walking and this is a plus. Ok I have put on a stone which I don't need but compared to others I am lucky. Maybe getting it early (58) makes it easier.
I too try to enjoy every minute.
It's sunny. Have a good weekend.
Silver49 Tastyron
Posted
I've always been a glass half full person and still am though sometimes get a bit frustrated by PMR. I try not to think about how much I could do in a short time prior to PMR. I now think about how, as I can now do less in one go, it will mean less wear and tear on my body! Wishful thinking? Friends and relatives are now concerned about me though I struggle with this as I was always so robust. I can do so much more than a year ago, for which I am thankful. I am fortunate that I am retired so no financial or work concerns. However, it does concern me that you are having financial problems which is understandable as you have been off work. Are you getting all that you may be entitled to or have you been assessed for benefits? It always surprises me that people forget about insurance that they took out for sickness and sometimes they don't realise that they can claim sickness benefit even if they have private insurance. I feel you have enough stress with PMR far less worrying about finances. Have you contacted CAB or the Welfare Benefits section of your local authority?
constance.de Silver49
Posted
I don't think Ron lives in England so CAB can't help. Anyway, can you get Welfare Benefits for PMR? Shouldn't think so as it isn't a permanent or life threatening illness.
Tastyron constance.de
Posted
I do get sickness benefit, not enough but better than zip. Some of the financial problems are partly self inflicted as my wife has just started a 4 year degee course in paramedics. She;s a bit younger than me (14) years so she will have to pick up the bread winning baton as i'm getting nearer to retirement age. Unfortunately it is Limerick University (west coast of Ireland) and I'm in Co. Waterford (south coast) so I'm on my tod Sunday eve through Friday eve. Still, I get to watch what I want on the telly, always lookng for the positive.
EileenH Tastyron
Posted
Good luck to her - my younger daughter is a paramedic in Yorkshire. I'm not entirely convinced about the degree courses, it is hard work and you aren't paid - it's the same with nursing. Esca is one of the last "on the job" training generation in England and now mentors sparamedics. She's now financing her Masters degree herself - while working full time and allowed no study leave. She wants to teach parmamedic stuff - must be nuts!
nick67069 Tastyron
Posted
I am with you Ron. Diagnosed in Dec 15... a bit lower on Pred. I am one of the lucky ones not to have too many side effects. PMR forced me to refocus my life and spend more "ME" time. I think I appreciate more small things in life. Still can't do press up either, but I am working on it .
EileenH Tastyron
Posted
I feel much the same - and every so often I suggest to people who tell me that PMR must be the worst disease ever to go across to the Lupus or the Vasculitis forums and have a read.
I'm not sure getting it early is a help whitefishbay - I was still 51 (just) and I lost most of my 50s to PMR as it wasn't recognised. That hurt in more ways than one. It was bliss to take those 3 tablets and be able to move - but I'd lost a lot of fitness and while I did carry on skiing for a while - my winter meditation - the primary reason for living where we do was gone. I'm just not fit enough for it to be safe.
Instead I have other pastimes and have new friends - and this summer I've met a few of them in the flesh which has been wonderful.
We are particularly lucky - I was a freelance translator so PMR just made it more uncomfortable and I had to concentrate harder. Now I'm properly retired and hope it stays that way. I also hope we can stay here despite Brexit - because I won't get the healthcare I get here if I have to come back to the UK. Above all, I won't get Lodotra without paying for it myself and that will make a big difference I suspect.
We've just come back from Lake Garda to interject a bit of work (editors for a Proceedings which paid for one of our trips this summer) but will wander off again on Monday probably. It's late summer by most people's standards, autumnal by ours now - mid-20sC and sunny. Long may it stay that way!!!!
Happy weekend all!
Tastyron
Posted
Yep. Life is definately too short. We had a couple of bad years. My wife's mother died of cancer in the face in Feb '2012, brought on quickly by the anti rejection drugs for a long term kidney transplant. 4 months later, my mother died of liver cancer, from diagnosis to dying in about 3 months. 12 months after that my wife found her stepfather dead on the sofa, had made himself a cup of coffee, sat down with his hands in his lap and died peacefully, nice way to go. A year later my Dad died of Pancreatanisis,(sp?). A really nasty time, no wonder this stress brought our little friend into my life.
Anyhoo, I could easily have gone into some sort of depression, but sod that, I've got a great wife and a 17 year old daughter to "tend" to.
Can't change what has happened, don't know whats to come, the only thing I can do anything about is the present and I ain't gonna waste it worrying.
Ron
constance.de Tastyron
Posted
iellen32 Tastyron
Posted
Your positive thinking got here at the right moment.
Yes, I am happy because I am able to see!
I hope this GCA will not affect the precious gift of vision!
In same time I exercise physically, I exercise my mind to think correctly, I mean, on being able to see what I want it to happen.
I feel joy with the expectation of a happy outcome!
You stay well, Tastiron! 😀
LayneTX Tastyron
Posted
Ditto Tastyron.
I too am learning so much about my self, life, ... Thanks to my Bowen gal who has opened my eyes to much more in the Universe. Amazing how our early lives created our thinking and so much of it was negative, though I thought I was a fairly positive and open being, but my goodness, now I see how much I took into my body, and how much I limited myself. I think the PMR said STOP what you are doing. Boy did it. (I'd like to use exclamation marks, but I got moderated once for that, ugh)
Now I'm learning how much beauty we really are and how feeling energetically well is so much better than me trying to solve my health issues with logic, medicines, foods. Believing in things is really key...
I can now stop and laugh and be thankful. But I do want to be able to eat yummy foods like spices, tomatoes, peppers, cheese, wine, beer, ... Soon, I will. I see now... happiness is not the foods I take in. 😘
Anhaga LayneTX
Posted
LayneTX Anhaga
Posted
Good thinking Anhaga. I often forget about my ginger, did add it the other day to some tea. I'm stopping coffee since my gut and adrenals are really sensitive now days, I've found Roasted Dandelion Tea is a great taste replacement and ginger in it not too bad.
I do wonder if microwaved hot water is any different than boiling it on stove?
i just miss having marinara sauce on whole wheat pasta...ugh... But feel better not having that. Or living in Texas, spicy Mexican food used to be a weekly thing for us, but my tummy can't take it now. Plus tomatoes and peppers not good for inflammation, night shades, but I'm going to experiment tonight with bell pepper.
I did make a Moroccan beef lately that was awesome, but it used paprika, I've learned since that paprika is a night shade, I did have sore fingers days later, maybe it was the paprika. Or it was a few cookies I ate...sugar and flour!
oh sorry this is not conversation of foods...
Anhaga LayneTX
Posted
Anhaga
Posted
ok, that last post really needs a lot of editing but I'll just correct the spelling mistake - aficionados
diana21296 Anhaga
Posted