One thing that has become apparent to me since joining the forum is that all our routes (I hate the word journey!) through this mysterious illness are different. I feel a tad guilty when I read of the suffering that so many are going through. Pain isn't normal and I feel that with nearly 20 percent of the 21st century there should be more understanding by the medical community that pain ain't normal and that it is their job to understand and control it! Why do I feel guilty.......because my pathway through PMR since being diagnosed in September 2017 has been pain free apart from a blip in July last year. And I do remember that starting pain - it was excruciating. Why am I so lucky? Is it because of the strain of PMR that I have, is the vast quantity of pills, supplements, creams etc which I use? I don't know. But love to all and one thing I can do is empathise and support you all xx Is this positive enough Bee?
A bit of sunnyside - as requested by Bee! - PMRGCAuk
I, too, am pretty much pain-free - except when I don't take enough pred during a flare. And that doesn't last long believe me!!!!!
Really positive Bee! Don’t feel guilty, we would change places with you in a heartbeat.
Thank you for your empathy. I do have pain and extreme exhaustion. GCA/PMR/Fibromyalgia. However, I am glad your journey has been easier. Some things in life are not easily understood. I get hope from people doing better. Thank you for your kindness.
Like you my sojourn with GCA was painfree (after diagnosis) and I always think I was extremely lucky.
I put mine down to being on the right level of Pred at the right time, not being hassled by doctors with unrealistic tapering plans and, as I said, maybe just luck!
Don’t feel guilty - it is what it is!
Thanks Mama Bea , ( are you my Mama ?!!) This is just what we needed!
Positive stories are everywhere on our forum , and even in the last few weeks positive tales from those who are getting to the end of the PMR/ GCA road have popped up. We have just had the usual increase of winter blues.
Seeing tales of triumph like yours , people who have found good and easy routes back out of the PMR trail gives me bundles of hope for the future , I love to hear stuff about people doing well.
Many of our issues with extra pain and side effects come from the differences in our metabolism , or , like me, the complex nature of trying to deal with a number of health issues at once whose treatments have to be finely tuned to work.
Even when I sounded like an unhappy camper the other day , my rant was a call to arms to get a stiff kick and the odd hug from my friends , like you , not really a tirade of misery.
After more than 11 years of juggling with pain and different medical issues I gave up misery long ago.
Don't stress the small stuff ?! I don't even stress the giant foot stamping stuff anymore because I know the anxious action isn't worth the pain.
A silver lining of PMR / GCA and other ' invisible ' illnesses is we will all leave with the serenity of Buddha when we finally get well.
( Or a murder charge if we choose to remain on the dark side!)
So glad you wrote the post , it will be good for newbies too , to see that the path isn't always a hard and stony one , PMR,,/GCA doesn't always completely ruin your life it can be well managed and controlled until your get back to health again for many and I am so happy that that is the case.
Never feel guilty for doing well , spread the wealth and when you see a friend in need let them know there is help out there and they can get through just like you on a much easier route back to Normalsville... it's an uplifting thing to hear.
Thanks Mama be , love baby Bee xx
( Notice I didn't say journey once 😁😋)
Thank you Bee! If you want to come and muck in with a 2 mostly well behaved beagles I will willingly do the mummying!
I love beagles !!
Mostly a cat person , but beagles are one of those dogs you have to love and snuggle .
So cool, so clever , so happy to be down right lazy .
Quite possibly they have an inner cat , or maybe cats have an inner beagle.?
I am adding a trip to see Mama Bea and her Beagles when I am finally well enough to get out there and walk them . Hugs to the snufflers!! And to you , Bee xx
You'll be more than welcome xx
Excellent , I cannot wait for my Grand Tour xx
Me too! I have a massive bottom so do you have room for me? Xxx
I don't think you bottom would get in the way of the fun , if you are up for it and those new boots of yours are made for walking I am sure there's a spot for you.xx
Okay where is their party being held and can I come please. I wouldn't trust Bleary eyed on her own anyhow. You would all end up being arrested!! I also have to admit compared to some of you on the forum my pmr does not even register. Long may it continue.YBxxx
Of course you can join our gang , although Mama Beas Beagles are going to get a lot of walking!! Or I am as I may need one for those wicker wheelchairs , a take handlebar moustache and an ear trumpet the way I am going so I will need a push .
Plus I have never been deliberately arrested I will have you know.
I was accidentally bundled into a Black Van in the 80' s during a Anti ET scheme protest .
When they realised and rang my Mum to pick me up ( I was only 15 or 16) she was so mortified that I was in the Nick that she told them to leave me there and refused to pick me up , so I was left in an interview room overnight until they could convince her I had done nothing wrong and she just had to sign a form because I was a minor.
When she did arrive , she started to ceremonially chase me round reception in circles with a rolled up copy of the Dancing Times as a weapon , and her giant handbag as another, so they took me back in my little room again until they could calm her down with a cup of tea.
Of course , I am not saying I haven't done anything that might have got me arrested since , but like you YB, in certain circumstances, I can be very persuasive so I think we will be alright .
I will admit freely I have sailed very close to being arrested, all in court and usually because there is a pompous prat of a judge or prosecutor. I have been threatened with contempt of court so many times OH couldn't be certain I would be home at night if I had a dodgy judge!!! I can understand your mother chasing you around, my mum would have gone the exact same thing to me but it would probably involve a rolling pin.YB
My Mum's hand bag weighed a ton and had half her life in it.
I think the coppers realised the weight of thing as it sluggishly travelled the air and were so scared of getting concussion themselves took me back out for their safety not mine.
Look at then post about epilepsy!!
I would have paid to see the coppers dodging the thing.
It did travel in slow motion it was so heavy , although she barely missed a still rather spaced out hippie who didn't even notice how close he had come to death as he had turned round and bent forward to make a roll up just as it flew past.
Next time I was in I ask them to call my Uncle instead , and again not even a caution.
Honestly , I could have been one of those wide eyed , butter wouldn't melt kids perfect for a look out in a British Robbery Caper. 👮
I love the word "journey". I feel life is a journey. I feel route is just another word for path or road, but journey evokes the action of movement along that path....
I just think that journey is so overused do thought I'd try path/pathway instead. The beagles are so excited about all our prospective visitors we may have to move house, well flat actually! On second thoughts we could ask Sheffield Jane to accommodate the overspill. I don't think she lives too far from me!
I like the word journey because you know there will be a destination - in this case the end of PMR!