Fellow PMR/GCA Sufferers: Please, Let’s Not Do This
Those that can't do... RANT!
Warning; This blog post contains strong language. If you are offended by expletives, please think twice before clicking on the link!
Go sister! I'm right there with you.
If I could find the right words I would have said exactly the same, but you have that skill and I for one (there'll be lots and lots more) are grateful to you and your skill. 👏👏👏
Many thanks Footfairy-1! Again, I so appreciate your support and your encouraging words!
I'm only a member of one Facebook group but I do agree with you. This forum is amazingly supportive and free of dubious quack remedies compared to the Facebook group. BTW I'm not necessarily against alternatives, just the 'if you'd only take xxx, like I do you'd be cured' attitudes
Thanks, Louisepenygraig. I'm not against alternative medicine either!
I'll support any options people choose to try to alleviate their PMR/GCA nightmare! I just don't want to be made to feel inadequate because I went the traditional "steroid" route. Or made to feel like a loser because I take a nap each day... it's the subtle, passive aggressive comments that I am sure nobody means as hurtful, but....
I totally agree.
Agree totally. Haven't had time or brain power to read yet Melissa. But from these comments I can see you have hit a point that I hit at one point. Befire I put my dirty great bug feet into it I will try and read the rant but I am sure it's the same one I had internally when "alternatives"to pred discussed. 🌻
No worries Poopadoop, have a read when you can...
This Rant is perhaps more about human nature and the way people (hopefully, unintentionally!) need to pump themselves up, at the cost of making someone else feel bad, or "less than."
Every fibre of my being wants to believe that it is "unintentional" and they are not aware that they are doing it.
I have read it now. So I can say that you summed up how I felt after a debate about alternative treatments on even this forum. I went away for a few months last year to just work at stopping myself getting Grr and develop a thicker skin- some comments you see basically push buttons and Tap into ones own personal dialogue with an illness that is a monological animal. Ok I might have made that word up😂 Long term illness can make you feel inadequate so anything that minutely adds to that is irritating and annoying and sometimes overwhelming depending on the way you feel at that time. The next day it might be water off a ducks back.
I now self- limit lots of things that make me mad, sad or plain confused these days. Mainly things like the news etc but some everyday things too. I am a mole and I live in a hole!!
Odd that you mentioned self-limiting things. I used to watch some CNN every day, to keep up to date with the crazy US politics. But I had some quiet moments about why I wasn’t feeling very “peaceful” and I determined that it was the constant barrage of negative news. So about a month ago I stopped watching all political news.....and I feel soooooo much better.
I don’t think I’m a “mole in a hole”, but really, I have discovered that my life is way better without that kind of news stuff in it! 😁😁😁
Exactly. Join the club. I watch nice news like the old blind dog keeping a 3 year old safe in Oz bush. Life affirming stuff. 🌻🌱🌻
"Basically, I'm for anything that gets you through the night - be it prayer, tranquillisers or a bottle of Jack Daniels." ~ Frank Sinatra
My life all revolved around teaching all the crap goes on in the world-class discussing and writing about it EVERYDAY. I just got fed up if it all. My friend tells me main news and I read why feels good.
Well said! I did the same thing over a year ago and it does work. All that negative news is just too depressing.
I’ve never joined, or wished to join, Facebook - now I know why!☹️
Hi Celtic, Don't get me wrong... I love Facebook. I've been a member for 10 years. It's a different medium, but it has it's place.
I think it's only human nature for people to want to share their successes; or if they feel they've accomplished something, they want other's to give "their way," a try!
I just think that sometimes (unknowingly) they get so caught up in "their way," expecting that it will work for everyone! And the words they use, can be interpreted by some snide.
Don’t let it get to you - if it does, then avoid it - you don’t need the stress.
Nope... It was a fleeting rant! Tomorrow I'll let it slide by....
You have just articulated what is found on most sites, at least sometimes. A kind of one upmanship or something that is deliberately self congratulatory. An implication that what you struggle with has been easily solved by them. Then there are people who get a bit of relief by hurting others.I don’t think those kind of posts would go unchallenged on this forum. Here we seem to have a real culture of support and genuine concern for each other. That’s why I stick with it. I have visited other sites and found them quite frankly a bit weird. It’s probably down to the strong characters that have stuck with ours since its inception, they set the tone.
As for really frank sharing - well you’ve kicked open a door and I for one am liberated by it.
Another lively relevant blog/post Melissa. 😘
Totally agree SheffieldJane. This site is a warm group of mutually supportive friends and sound advice. I find it very comforting.
Thanks SheffieldJane! I do agree with a lot of what you've said! "None so queer as folk,"
Facebook is a different medium, but I appreciate it for what it's worth.
PS Happy to be a small part of you liberation!
I closed down my fb account because I am not allowed to post pictures of my grandchildren on it, quite rightly really. So if I can’t show off those little beauties it seemed a bit pointless. My page was a bit boring all leftie politics and tree campaign stuff. I long to see what you do on there though! Such is life. 🤨
Hi SJ - great response for Melissa - I agree with everything you said
Not the main issue here but more power to those accounts on FB or anywhere with 'lefty' politics and tree campaigns and for people like me - lots of feminism - But I only follow ONE account on FB - that of my grandchildren's mother or I'd miss lots of stuff I like to see as i live a long way from them - otherwise never for multiple reasons.
As you may know my daughter is in Australia and she decided that she didn’t want photos of the children on there in spite of high security settings. So I decided to shut it down. There were so many on there already. My eldest posted her children a lot and I would see them at parties when their friend’s parents posted. So that’s sad. I don’t really miss it. They message me via the iPad now for instance. I woke up with jaw pain, creeping round the right hand side and a sore eye - same side. You always think it could be GCA so I’m awake at 4 am or thereabouts. ☹️
That's what WhatsApp is for. It's encrypted and free. You form a group with family and keep it private. I keep up with all my neice's and nephews that way. I had FB once then people from school kept messaging. Sounds selfish but I wasn't interested 😂
Hi Jane, I'm sorry. I think it's sad about your grandchildren and you not seeing photos of them. ... but I guess your children have good reason and their opinion must be respected. Although, I'm sure that does not make it any easer...
I created a Facebook Page for Max, when he was born, but only his parents, his other Grandparents, my husband and I have access. I post photos, thoughts and ramblings; along with important events in his life, that he and I have shared. The hope is that someday, when I am no longer "here," he will be able to look at "his FB page" and actually see (chronologically) that we had built a bond and that we shared many happy times together even though he may not remember them or me.
I am now even more thankful his Mum and Dad allowed me to do that.
Nice idea Melissa to do that page for Max.
I get photos almost every day via the messaging function on the IPad or just attached to an email, the modern version of a letter NOT-LONG ENOUGH. I get them but can’t show them off to friends on a public platform. I get little films too, like Rafe’s first steps. I am content. Before, there was nothing to prevent one of my friends posting them on. FB was such a procrastination tool. How many times have you “ come too” an hour later watching the progress of a poor neglected dog, or worse? At least this forum has a common purpose. Faintly noble 😅.
Ohhh that's fantastic!!!!!! Super! That must be your favourite time of day when those little snippets come in!!!!
I shriek with joy, when at about 5:00, my "Facetime" ringer goes off, because I know it can only be Max!!!! Yesterday I watched him walk like 8 feet across a room before falling and laughing! He did it 10 more times because everytime he would fall , Grandma would clap and cheer and make a lot of noise; he thought that was hysterical!
Hurrah! Only the other day you wondered why he wasn’t walking. Well he is now!💗
I know right!!!!!! he is a bit slow in doing things, but all in his own time... It was amazing to see him walk across the room!!!!!
Yes SJ the security of these images could be a problem but my daughter- in- law seems herself not to be too worried about this so there are lots of pics of the kids - and videos of them singing/dancing/at parties/school events etc etc As she continues to post these I decided I might as well not miss out as I do not see them as often as I like and the video chat facility is useful as well. But there obviously could be a problem almost 'anywhere' even when we post images of our grandchildren on sites such as this - which I have done. I am however more concerned about what will happen as they children become more 'independent' on the Net - there are many possible pitfalls as we all now know. Perhaps I have been too optimistic !!
When one of my neice's was about 14/15yrs old she did the usual sneak out the booze end of summer outdoor party. No drinking experience previously apart from sniffing mums wine. She was so drunk she fell asleep in a ditch. Fortunately a friend missed her and thete was a massive police, dog and helicopter search. Found safe and well (having been woken up by helicopter and blue lights) but spent rest of night in hospital. It was on the local news and online. The next morning she had 50 friend requests on FB. None of whom she knew. She had been treated gently by mum and dad (relief) until she said look...50 friend requests and was happy. Cue mum confiscating phones laptops etc. And a ban on any parties until 16. God knows what might have happened if they hadn't realised she was about to use FB to befriend total strangers. And all because her real life friends used an open FB page to spread the word she was missing. It is known as The Incident in the family.
She is 21 now and loves a good gin and posh aromatic tonic.
That's quite a story - pleased she survived all that - being a teenager is hazardous as we all know !!
When I think back to the shenanigans I got up to... : 0
I am lucky to be alive. ...but it was much different world than!
My wild ,child, tearaway ,is a child and family therapist and completely teetotal .
I am glad I’m not raising children in such a digital age, it’s frightening.
She is very sensible now. We call my baby sister the general so one look from her and they knew. The girls and my sisters are best friends and shop together and all 4 with dad do facetime and quiz apps together.
I was afraid she would take after me. 😂🤣😂🤣
My "wild child" is a Mom of two and took after me working at American Express!!!!! WTF?
Oh my goodness!!!!! Thank God she was okay...
The worst thing was that our cousin, who admittedly we didn't know very well died of hypothermia on new years eve a few years before at 23 years old. His dad never got over it. So it was fresh in all our minds that even in late sept it could happen.
Wow! How terrible.
Yes awful. My uncle was 72 when his son died as part of second family. He had been with son and wife celebrating new years when sons friend invited him out to town. The lad was a home bod but went. The ings where they lived was flooded and when he didn't return it took them 3 or 4 days to find find the poor lad. My uncle died about 18 months ago and sounded like he was happy to go.. very sad. The boy was about 18th months old the last time I saw him.
That is tragic Poopadoop. Those shockwaves will go through the generations.
Hope your jaw and eyepain stop. I get the same every now and then, it is disconcerting.
One of those scary symptoms that freak you out. Hmmm!
I agree with Footfairy-1. I don’t have the skill. But life sucks. I have PMR and thank the Lord not GCA. Thank you so much for putting into words what I can’t say. Bless you. In my house and life at the moment life is truely s**t*
Jean56, so sorry to hear life is 💩 for you right now.... hopefully it will change soon! Fingers crossed! Thanks for reading and your support!
Thank you for a really good rant as ever, always cheers me, snide is never good. All I have ever had here is understanding, help, encouragement, some ideas to try and sometimes a good laugh. Keep up the good work! 😂
Cheers CT-5012! You are most welcome! Glad I could cheer you a little bit! Thanks for reading!!!
Marilyn's exquisite face expresses inner mental pain just like that felt by all PMR sufferers. Keep fighting Melissa. x
I most definitely will! Cheers!
I left a Pmr group on facebook because they were so argumentative and obsessed with turmeric.People were asking the same questions all the time and the admin were getting frustrated and kept saying read the 'pinned post' all day.
Then I found this group and it is so supportive,I don't know how I'd manage without all the helpful information.
Snap , I left as I felt it was getting political. Happy here .
Cool. I'm happy popping in and out of both spaces.. it gives me a different perspectives.
Hi Sandradsn, Yes, I find that sometimes, but I tend to ignore.
Yesterday was an anomaly... I kept seeing a pattern of what I perceived as snide, unnecessary remarks. Maybe it was my Muse (she who shan't be named) giving me inspiration for the Rant.
It's a different medium, for sure. You have to have thick skin and just learn to cruise past some of the crap, you mentioned above... It's the passive aggressive, snideness that got to me today... Tomorrow, I'll side past it! : )
We’ll be mean to you if you want mamici. We can you know. We just choose to be fluffy bunnies instead.
I've never had any use for Facebook. It reminded me way too much of what we called a "slam book" back in high school, where classmates wrote gossip about one another and passed the book around for all (except some of the less-than-cool-kids) to see. I still hate gossip.
And I am glad of this site, where I've learned so much, and have made friends from all over the world. We're all so different, but we all have so much in common.
I'm glad we're not into the Disease Olympics here, where members compete for who is having the worst of it or the best of it. We're into the Getting Better Olympics: We pick up our fellow members offering empathy, wisdom, humor and/or a good rant to help us all get through this thing.
Keep on keepin' on, Mel. You've become a treasure.
Hmmmm? That has not been my general experience with Facebook, but I do respect your opinion.
I had a bad "Aha" moment today when I read a few odd comments on FB, but I have to believe people are inherently "good," and that the intent (of their words) was not coming from a bad place.
...and thank you for the lovely compliment! I don't think I've ever been called a "treasure."
Hi Good-Grief....YES !! I remember the “Slam Books “ from high school. I have often thought like you , that the slam books were the predecessor to present day Facebook. I stay far away from “Gossip” in any form, it’s not nice ! Suzanne
Hmmm? I don't know Slam Books... but Facebook isn't so much "gossip," as it is people's opinions.
I like reading the wacky, weird and ridiculous things people BELIEVE to be truth.
I bet people read the stuff I write and just shake their head's in disbelief.
One man's truth...
This sort of thing happens in many Facebook groups, I’ve sort of got used to rising above it (mostly). But on a lighter note I didn’t know there were any such groups for PMR/GCA on Facebook. So - yeah I know I shouldn’t have - I typed in PMR to see what I could find...
I found the Pregnant Mare Rescue group. ..🙂
Hahahahahahaha! Okay that was hysterical!
Yes, I usually try to ignore it too... today a few of the comments I saw, just made me sad mostly.
Just what I need is a horse lol
My legs hurt just thinking about it!
I would like to sign up. What’s not to like? 🐴🐎
Hi Mamici 1
I haven't commented on one of your rants before but i do read them all (just as from a different angle I read all of Mark Benjamin's humour) and I do understand how you feel (even if I am male). I guess you would consider me to be one of the lucky ones in that I still work (albeit only on average two days a week but at a fairly intense level) and I do continue to outwardly lead a fairly normal life for a grumpy old 73 year old with knackered knees but I too experience all that this affliction and it's effect suppression treatment has to offer. I'm knackered most nights, my arms are constantly full of bruises and scabs where the skin has scrapped off, I cannot remember most peoples names, I'm out of breath climbing the 22 steps of the spiral staircase to my bedroom in the roof and over the last three years have had a number of inflammatory parallel issues (from Bells Palsy to Sciatica) to understand what it is like to be in the depths of PMR and GCA. I say all that not to boast of my battle scars but to tell you I understand where you and all the other members of this forum are in coping with this thing that hit us from nowhere.
It does though provide the background to yesterday afternoon which I spent at NICE (the National Institute for Health and Care Excellence and the body that approves the drugs for use by the NHS in the UK). I was there as a so called Patient Expert (X being the unknown factor and spurt a drip under pressure or as my daughter would say of my frequent radio broadcasts as a retail expert - one who knows more and more about less and less until he knows absolutely everything about F... all) as part of a review panel for the proposed trial of a new drug to treat GCA. On the expert side of the table were three professors - one of whom was a rheumatologist and the other two medical economic experts and me. On the other side were 8 representatives of the American company who have developed the drug who were a mix of medical, pharmaceutical and development specialists all of whom had higher degrees and over half of whom had flown in just for this meeting. At the end of the table were three extremely nice people from NICE all with doctorates and very bright. I felt very small and insignificant (a feeling you seem to recognise) amidst all of this overpowering brain power especially since they were all young enough to be my children.
The point of my story is twofold.
Firstly there is a lot of work going on to try to understand better (the bigger understanding problem was mine in trying to follow what was being said and in particular what all of the acronyms meant and remembering that the next time they were used) where the problems with the autoimmune systems come from and if all of the vascular problems are related. They are looking very hard for something to cure or prevent the issues and not just manage them. That work is producing testable results (though the evaluation of those results will probably not be until 2022 and any drug introduction unlikely before 2023) and that the results are looking very promising. The fact that the company had 8 such high powered people there shows how seriously they are taking the problem. Even that they were having this kind of review with NICE prior to the testing there willingness to come up with a solution that passed the NHS cost effectiveness criteria showed there commitment.
Secondly the fact that I (or someone like me) was there, was a full participant and was considered an important focus of the meeting shows that people want to understand. I had to take them in some detail through what had happened to me since my symptoms first appeared and I was questioned about that in some detail and with a great deal of empathy. They wanted to know what was important to me about my condition, it's treatment, its prognosis and my emotional and psychological reaction to it all. My opinion was asked on everything from the length of treatment to flares to oral or injection delivery of the drug.
Hopefully I was the AMBASSADOR that you would like those of us who have the chance to be and that I got across what it feels like to have a debilitating condition that is worse than a jail sentence as you have no clue as to when your release date is going to be.
On a personal note, after a second flare in 8 months I have been on a drug new to GCA for the last 7 weeks. It is Leflunomide and I really think I am getting some good benefits from it.
Keep on ranting for all of us - you do it so much better than I could (but then again I am a mere man!!!)
Thanks for all that info Retailmonkey - perhaps this posting could do with placement in a new thread so it maximises accessibility. Good to know there is such work happening even if we are all 'out of jail' ourselves before the doors are generally thrown open for hopefully 'everyone'. It sounds like you were well up to the task of expressing to the others there your experiences of the significant elements of PMR/GCA - and being part of this great forum would have really assisted you with that I am sure. It would have also been quite a difficult task as Melissa suggests in her blog as we all experience these diseases in our own 'unique' ways while sharing variations on common themes.
I agree Rimmy! I am quite sure Retailmonkey did us all proud!
If it were me there, I'd have been sprawled out, across the conference room table by 13:00... with drool running down my chin!
BRAVO!!!! BRAVO!!!!! BRAVO! Fascinating! What an extraordinary day you had, huh? WoW!
Thank you for sharing the details about your amazing day at NICE and for being there to "represent."
I am thrilled to know that these critical discussions actually take place and that there are "high powered people" sent to talk, listen, and share information with the ones who are personally impacted by these disease. Without that important dialogue, there can be no progress.
You are our AMBASSADOR and I for one applaud you!
Thank you, thank you so very much for attending (what was probably a very tiring day!) and for what I am sure was an open, honest and perhaps difficult conversation!
We are all proud of you and thank you !
You may be a "mere man," but you are ROCKIN it for men and for all PMR/GCA sufferers!
It was fascinating not just from the point of view of the development of the drugs and their testing but for how important all of the economics are to make sure that whatever is developed comes at a cost that the NHS is prepared to pay. I would love to share the whole of what was said and the approaches taken but, because the conversations are commercially sensitive, I had to sign a confidentiality agreement before I could even take part (not quite like the one Stormy Daniels had to sign in the USA!!)
It would appear that there is a big UK conference of the current Rheumatologists coming up in July and we might get the chance to take part in that.
As for the tiring day (meeting on it's own was three and a half hours), yesterday I was like a limp rag and after a too energetic start (covering up the hole in the roof for some building work I am having done at the moment to try to keep the downpour out - even the weather hates us!!) I did absolutely nothing for the rest of the day. Hopefully today I will have some energy back
Wow! It really does sound fascinating if not exhausting!
I have thought that if and when I ever get over this fatigue, I'd like to "get involved," in some capacity. (?) I have a background in analysis (and project management) and I'm very comfortable in "high powered" conference room "think tank," settings... If I could progress the PMR/GCA cause, all the better!
We shall see what the future brings!
Again, Stormy... thank you! I am so happy you were there!
Oh boy, I certainly hope that I’ve never made anyone feel inferior or bad when I mention going to work. If so, I’m so sorry!
I completely understand thar I’m one of the lucky ones that have been able to keep working. And I’m lucky on many fronts: first Pred is doing its job which allows me to, i have really understanding boss and co-workers, a job that I’ve been doing for over 20 years so I’ve got procedures in place and can do a lot of my job somewhat on auto-pilot, a desk job that is not at all physical, and especially a support group (you) that have taught me tricks on how to manage Pred, the disease, and other potholes in the treatment road so that my journey has been made easier.
If I’m being transparent, you should also know that although it’s a blessing to be able to work, it’s also a curse to have to. Working with these diseases is not easy and the darn thing got me a couple of years too soon.
Each of us made ‘the work decision’ on our personal experience and we should never feel bad, nor make others feel bad, for those decisions. If I’ve been insensitive and made anyone feel bad, my apologies!
Good morning Insight 329, just a quick reply before I rush for a sustaining cup of tea.
Please put all those worrying thoughts to bed forever. In no way have any of your posts come across as insensitive. Carry on posting in your own way and with your own style. They are as important, pertinent and helpful as any other.
Go and make yourself a cuppa and breath in a few deep breaths listen to those birds and enjoy the day.
Enormous good wishes,
Well put judyliz.
Just got up and i think I will make myself a cuppa. Thanks so much for your kind words.
You got it right ,a blessing and a curse . No you are not at all insensitive.
Sorry only scrolling through at the moment so forgive dropping into the middle of it.....for me it's being in awe of people who can work. I worked with spinal injury and fibromyalgia for several years and finally had to stop. I know that sometimes it's necessary financially and psychological to keep working...been there. 🌻
Ohhhhh Insight329, No, absolutely not!
The comments that sparked that particular RANT were not found here on HealthUnlocked.... they were found "hidden" in numerous comments, within several Facebook groups.
Yesterday, for some strange reason my brain kept seeing a pattern... These throw away sentences, plunked in the middle of a seemingly, empathetic, caring comment... that just looked (felt) out of place.
I think it was the “…pain is not an option for me,” one that got to me. I thought, "My God... have I allowed pain to be an option?"
I meant NO DISRESPECT to anyone; especially those who suffer with PMR and/or GCA and are out there in the real world every day managing a family, working or going to school! Quite the opposite I am in awe of you.
I just needed to point out that sometimes what someone says, or the way it's positioned can inadvertently make someone else feel bad... I'm sure it unintentional, but it happens.
You have NEVER made me feel bad or made me feel "less."
I don't even understand that sentence..." Pain is not an option" what does it mean?@#£&??
Hahahahahahahahaha! THANK YOU!
I have no idea! As I said, it's not an viable option for me either, but I sure in hell have a lot of it!
GREAT SONG!!!!!!! xxxxxx
That music video rips me up everytime I watch it and pulls me in to watch it again as I think it’s just so powerful. I saw a documentary on the making of it, or maybe it was of his life and it was included in it. One of the locations of filming was his museum, which had been closed, forgotten and in bad shape. Cash’s health was so bad that they’d get a shot and then he would have to stop and take a long rest. The metaphor of his crumbling museum/material life and his failing health (or would that be simile?) makes that video haunting to me. Add that June died shortly after makes her appearane even more poignant. Now I’m going to go watch it and shed a few tears. Thanks for sharing it Poopadoop!
I feel the same and saw that same documentary. It's just raw.🌻
Raw describes it perfectly.
If I said ‘pain is not an option’, I’d probably mean I’d do and take anything to escape it (including Pred).
But it does bring up a comedy skit like Let’s Make A Deal (US game show where the contestant has the option of what’s behind 1 of 3 curtains). Announcer, you picked curtain #1- a car. Contestant- darn i didn’t want a car; I was hoping for pain. Announcer - sorry, psin was not an option,
Ok, I’m a bit sleep deprived today so that was a bit of a stretch.
Hi Insight! Sorry I just saw this coment... The context in which the comment was written, led me to believe that the writer of "pain is not an option," was somehow implying that although there was pain in the mix, s/he did not acknowledge or allow the pain to be an active participant in the overall big picture... That was my interpretation anyway. Which begged the question.. "What is wrong with me.. why do I allow pain to be an option?" My own insecurities at play here, of course... and s/he could have meant it an entirely different way. But as they say... my perception is my reality! Hahahahahahahaha
Way too freakin heavy for a Tuesday morning!
Oh gesh, if that’s what she meant, then she’s just a masochist or is great at denial.
Pain is one of the first things that I think of in the morning - what’s going to hurt getting out of bed? And if honest, it’s a bit like me and my shadow - sometimes very noticeable, sometimes not. But I know it’s still there.
So relieved. You are so right, too! Words, and how we use them, can either hurt or help people.
I just want to echo Judy and the others, Insight, you never make your readers feel bad about themselves. You chose a very apt "username" and your insightful comments are much valued.
Thanks so much. I try. I think it was Mark Benjamin that said that it’s member’s comments and participation that keeps this forum vibrant and active. That gave me confidence, and a nudge, to participate.
Your posts are useful and insightful Joy, you fit your avatar. I look forward to them. The diversity on this site is what makes it great.
I agree SJ - this is an 'exceptional' forum for the diversity, intelligence and 'insight' of its members !!
Thank you; that’s so kind of you to say. And I agree, too on the diversity adding to the site. We come from different areas of the world with different life experiences which really adds a different ‘voice’. There is a pun there as the UK slang sometimes makes me chuckle.
Regarding FB: It’s no secret that the US is ‘struggling’. We seem to be in a ‘for’ or ‘against’ mode of operation as witnessed by our disagreements on gun contol, DACA, socialized medicine, Mueller, Trump, #metoo, ....the list is long. As a nation, we have become much more vocal - and in some cases not in a good way. FB today is nothing like FB two years ago. Even the support groups have an aggressive undertone with politicsl disagreements.
When i found PMRGCAuk, it was like finding an oasis in a storm. And I prayed that we wouldn’t bring our politics to your doorstep. FB hasn’t been so successful at keeping it a supportive venue.
So many 'big' questions - yet once again you have hit the nail on the head discussing more 'elements' of the PMR/GCA experience. I use the term 'experience' in a holistic sense as you rightly point out this is always unique and subjective and varies greatly in each individual - like almost everything else in life. I remember once an 'old' (I was young at the time) Anthropology professor saying - 'it isn't the biggest surprise with human beings that they don't get on well or like each other at times - but rather that they can relate to each other at all !!!...'
Humans - whoever they 'are' or wherever they are from - even sometimes from the same family - often struggle to understand each other and make sense of 'other' people's actions and words. To a large extent we overcome these perceptions by making assumptions based on shared 'rules' and conventions - but often the gaps are just too obvious to ignore. Sorry - not trying to be 'academic' about this stuff - but after years of working in violence prevention education with children and adults (of all 'kinds') I am all too aware of the of 'teaching' or demonstrating something called 'empathy'. Without it we are all less than fully human and yet many of us live in societies where the capitalist ethos of competitiveness rules on almost every level. Sports of all kinds are premised on this - and from dot we teach children that winning is the BEST thing - forget 'playing the game'. What is very sad is the way this translates to almost every aspect of social interaction and there has been lots of discussion about competitiveness on social media - like 'look at MY beautiful children and the holiday WE are having etc etc etc. While we may be 'happy' with the successes and joys of others it is of course natural to feel we might be missing something (similar) in our own lives - or even that they are 'rubbing it in' (whatever the 'it' is).
I wont go into the whole gender thing of women being more 'naturally' or 'socially' empathic than men as it is contentious of course and in the end also varies greatly between individuals - but dismissive, narcissistic and cruel behaviours exist everywhere and are such a waste for all of us.
Sorry for this ramble I just really meant to say I agree with your major point that we need to support and care for 'eachother' even MORE in the face of 'disaster' and making arbitrary and competitive gradations is at best totally unnecessary and at worst truly unempathic !!
Thanks again Melissa for another excellent post !!
Wow! You never cease to amaze me...
Just when I think I perhaps "get you" (to the extent that I ever, ever could, from this limited vantage point!) you shed another layer and show us all just how very profound and astute you truly are.
You are my sage and I am so grateful for each and every response you gift to my Rants.
Great reply: co-operation and community and empathy. We take so long to reach this conclusion although it's blindingly obvious it benefits us all - like money enough to live on and wisdom I wish they could be gifted to each young life, without all the competitive struggle and loss of confidence. I listened to this bbc.co.uk/programmes/p02dbd... on the World Service, four eloquent speakers across the age range, so much insight and optimism.
Rimmy, I have a young friend, whom I adore, that uses the hashtag #myfamilyisbetterthanyours sometimes when she posts pictures of her family. I just want to reply #youvenevermetmyfamilysohowdoyouknowyourfamilyisbetterthanmine? Her family is pretty great - absolutely one of my favorite families. Love them!!! Don’t love that hashtag!
Mmmmmm ... exactly what I was talking about - a 'good' example ...
Good morning Melissa,
I subscribe to your blog and normally read it in my emails the day you post and then the following day like many forum members I go to the Healthunlocked post as soon as I wake up just after 6am. So I enjoy it twice.
Like many members have said you have the ability to put into words and clearly show how emotionally involving our conditions can be.
I am totally in awe of your ability to be so eloquent at such high doses of prednisolone. It is rare. Over the last few months you have put into words so much of how I think and feel but when i have tried to explain to friends and or family I sound like I am whining or moaning. At least in my own head I do.
You are important to the group and your progress and posts give a human dimension I love.
AND what wonderful replies, don't we just learn so much about the varied fabulous backgrounds members have. Today's replies have been so illuminating. I have really enjoyed them.
Judy, PMR 2years, GCA 21months
Dear Judyliz, I am always moved by comments I find (such as yours) that the kind people on this site leave for me, following one of my many Rants; but yours, this morning, brought tears to my eyes. Seriously.
I tell myself that I write only for me and (in my heart) I believe that that is true; but to have someone tell you that what you write is emotionally representative of how "they" think and feel, is the highest honour I can imagine. Especially if that person feels stifled and unable to express their thoughts and feelings them self.
If I do that, for you and others, if I do that even in the smallest way, than I really have been given a gift, for which I am eternally grateful. I will try not to squander it.
Well written! Facebook gets checked a couple of times a week these days and I rarely post. It is good for group organising events but that's about all! I Work with vulnerable families and the times they quote Facebook crap as the oracle is frankly worrying. Fortunately my lot get a reality check as I dispel these myths. I volunteer with an autistic group and the fallings out through poor communication amongst the younger generation have taken some diplomatic conversations too. Minefield! 💣
Thanks Pongo. I am not on (FB) as much as I used to be, but I do still find it a semi-valuable medium. Yes, I too LOVE dispelling the all BS posts... Does that make me bad person? : ( Probably.
No it makes you INTELLIGENT X
They say that Facebook is primarily used by over 50s now and young people have largely shifted into other developing apps. Do use the internet but for news I want to look at. Overviews and review if film and TV and odd research projects. I would end up throwing phone against the wall otherwise 😂😂🤣
Thank you so much for letting us proof read yet another riveting instalment of your future book!! Surely that IS on the cards for you Melissa?
I do wonder if the enjoyment, for me anyway, of your articulate writings is purely because I'm a fellow sufferer and would a non sufferer get anywhere near the same understanding - lets face it even our friends and families who see us daily find it difficult to understand just how we really feel. Is this what happens on Facebook? do they just think they know and then reel off their knowledgable cures and advice. I understand your rant but for me I couldn't even go there, I've never done FB and never will for all the very reasons you're ranting about. Hope you feel better for it now, at least you know you can come and talk to us about anything...
However that's the capacity of my brain for today and as we're opening up our hearts as per your rant, can I say from my perspective 'I don't know how the f...k you find the brain power to articulate as you do whilst on pred?'
No offence meant but something I've always admired in you cos I can't do it!
Hahahahahahaha. Thank you, thank you, thank you!
I think you're right on the money! My Rantings (future BOOK!) will have NO value to anyone who has not experiences an autoimmune or chronic illness. I just don't see how they could relate to anything I write about, as you say.
Luckily for me *said tongue in cheek* the incidents of auto immune diseases is on the rise!
Do you want to be my agent? ; )
Always looking ahead some good does come out of bad.
Love to be your agent - just check the diary! , as per your daughter's reckoning, I'll be available Tuesday 2020! I can keep you in check then! or not! job on me hands there methinks...
I’ll come to the book signing when it’s possible.
I’ll be right behind you in line, Chrob, I anticipate a NY Times Best Seller
From both of your mouths... to God's ears! Thank you!!!!
Yes agree- one size doesn't fit all and what we are need is support and encouragement. I'm a member of two groups on Facebook but must admit I have found them a bit weird and at times uninformed. I don't read them very often.
Hi Jackoh, Again, for me, it's all about perspective... I like seeing things from different angles. I may not agree with the angle, but I like knowing it's there should I want to view it!
Yes understand but I suppose with me it's also what I wanted to spend my limited energy and head space on. There's not a lot there so personally I feel I need to be wise.
Good point... I seem to unlimited cognitive energy, it's getting up off the couch , I cant seem to master! Maybe I am just lazy! : )
No you're not lazy Melissa just ill! I know when I was on just 20mg I seemed to have so much cognitive energy- was organising everything for everyone else in family!! I physically couldn't do it but organised big family holiday, and two family celebrations. Don't feel able to organise or attend now on many occasions!! 😜
Another think-fest after reading your blog - excellent!
Ooooooooo, I like that I have inspired a "think-fest!" Cool.
You always do . Love it
Hear,hear Melissa.!!! I have an acquaintance who has told me she’s been diagnosed with PMR (twice) and refuses to take steroids. Makes me very sceptical. When I was first diagnosed I couldn’t shower, If something fell on the floor it stayed there, and I was in AGONY!!! She is so SMUG and makes me feel so guilty that I have given in to the pred. All I can think, like you, is that there must be different ‘levels’ of this illness. Another friend only had it in her shoulders and arms. I have it every b....y where!!! For 4 b....y years! 🐵🙈🙉
Hi Suet3942, DO NOT give into those feeling of "guilt!"
I had a weak moment yesterday, that I believe the Universe pushed on me, specifically for the purposes of writing that Rant!!!!
Today, I refuse to let someone else's words make me feel "less than," and so should you!!!!
Yes, the different "levels" of the illnesses makes so much sense to me.. why else would our abilities to take part in life be so varied? And fatigue, pain levels, mobility levels, etc.
4 years, my goodness! I am only 23 weeks and 5 days in, but who's counting! : )
I know you’re right Melissa. I was doing so well and in February I was down to 5mg which was the lowest dose in those 4 years. Went to see the rheumy nurse, told her I was feeling ok and the next day WHAM! sore scalp and feeling really ill. Long story short, was put on 60mg but consultant was sceptical about me having gca cos I’m on methotrexate as well. Suggested I went to 10mg pred and increase the methotrexate by 2.5 and now the scalp is ok and I feel ok again. Me thinks perhaps the metho is suppressing gca? WHO KNOWS??? It’s a complicated illness. You go from taking no meds whatsoever to having a bloody bag full!!
Don’t let the b......s grind you down 😤😤
BUMMER! You just can never tell what the Universe has in store for us!!!!
You're right, don't let the BS grind ya down!!!!!! EVER!
It's the idea that they can tolerate the pain and you can't that underpins the intended and/or perceived smugness. It shows a total lack of awareness and empathy. No one can feel anyone else's pain. But we can imagine that someone has pain that Knocks them off their feet and is life limiting. I can look at someone's face and the way they move and by the colour of their skin and 1,000 yd stare that there is emotional and/or physical pain...even if they try to hide it. The reverse is true also.
P.s. you can feel it in every line if s post when someone is feeling the pain and pressure. If we can do it online without the visual and auditory cues how come some can't see it in person??@£££&#?
People have to take the time to look. Stop thinking about themselves and their to do list and really look and pay attention. I think the stresses of the world have so increased, that we as a society are so busy, that we don't slow down long enough to see what's in front of us.
You are so right. Several times I have seen people fall etc and people walk by. My friend once saw a woman hanging onto a bollard outside Tesco and you could see her legs were totally spasming, almost buckling. She ordered staff to get a chair and put it behind the woman and leaned at the back so the chair wouldn't slip. The woman slowly sat down and heaved a sigh of relief. All you can do is hope people notice if you fall over etc.
As the saying goes Poopadoop - “walk a mile in my shoes...”. Yes I have the “polywalk” lol.
I hear you on that smugness. I think we have two choices with people like that. Take the high road and not talk about health things or inform them how much damage they are doing to their bodies by letting their inflammation go unchecked. After all it's more than just a persons level of pain tolerance it's an overall long term health issue.
Hi TooSore. I have pointed that out to her but she refuses to take the pred. So be it!
Thank you once again, Melissa, for an illuminating rant. Makes me think "aren't we so very lucky to have this site where we do our best to support each other."
The kind of passive/aggressive rubbish you describe is bad for the soul and is very unhelpful for the reader of it. The people on this forum, and I won't single anyone out (or I could be here all day and then might miss someone) have helped me so much I couldn't begin to say. The people who ask the questions, the ones who answer from their own and other's experiences, and the ones who lift your spirits at a time when you really, really need it, all help to keep us all going through difficult times when understanding is so vital.
As the old saying goes "when you're going through sh*t, keep going."
Thank you, Bj2016! And yes, we are lucky to have each other!
Hear hear mamici1! 👏🏻👏🏻👏🏻 Well said. I totally agree with you and love your rant. Perfect! 👌
Why thank you xdbx!!! Cheers.
When I read that someone is just taking turmeric or nothing at all and is still able to run marathons, hike, or doesn’t understand what all the fuss is about, I think they have the wrong diagnosis, which is quite possible when so many of struggle to get doctors to sort things out.
I have had to return to work recently after a 6 month leave. My choice would be to stay home and get better but I need the drug and dental benefits. Just when I have a good day and think I am in the clear, something like stress from work sets things off again. It’s a constant battle. Anyways I am very grateful I can work for now but it’s not always easy.
I'm in the same boat with work. I need to but wonder if it will prolong my journey. When I'm on the right dose of prednisone it's not too bad - I have a very good support system there. But when the dose and my body/work demands are a mismatch it's very difficult. I should take more sick days but sometimes you think that the prednisone will kick in and it's too late when you realize it's not enough. I have struggled with the fact that my home is embarrassing and social life is barely there but some things have to give. I'm three years in and down to 1 mg. I can say that for me anyway it's getting better. With the additional energy I have chosen to do more exercise instead of the housework and am trying to make an effort to do more with friends. That's hard because by the end of the week I am typically a puddle, Fridays are definitely out. Hang in there!
Yes, same here, housework is a low priority! And by Friday, I am a write off. My motivation and zest for life certainly has taken a hit. I am a long way behind you at 12.5 mg and only 7 months in. For sure, exercise is so much more important than housework! We have to take care of ourselves or nobody else will.
I am sure you have checked your contract closely. The last 5 years of work were horrific because despite being advised by occuoational health to put me on a graduated return and light duties after back surgery, they did everything to make things as hard as possible and because I was ICT teacher I went straight back to semi bend stance which buggered my back completely. Cant even list other things here without getting mad. But one example was occupied healthbsaid to ensure I had proper lunch time for 45mins at some point between 1and 2pm as I had diabetes. But then my line manager booked me teaching slots from 9am through to 3pm some days so no break.. any complaints ignored as he said basically he had fuddled teaching hours for staff for years so my hours on paper where half. In reality they were double everyone's elses. Thus I looked at contract and my sick leave was rebooted after 3 full months back at work So if I needed time after 3 months I got drs note again and spend 3 weeks in bed to recover and 3 weeks to build up a bit. Sorry I went back there for a minute. 😂
They had details if hands free voice actuvated computer package and after 3 years it was still not ordered despite monthly requests. Going to punch a very soft marsh mallow pillow after thinking about it all 🤑🤑😜😂🤣😂🤣😂
Poopadoop, I’d hot ‘like’, but I don’t like what they did to you one bit. They treated you terribly. Shameful!
The line manager told his "bit on the side " (his PhD student) that he was going to crush me (mainly because I said it was unethical if him to supervise his girlfriend work. He never liked that I thought ethical and moral behaviour is number 1 in term of staff and students he would refuse to recusebhimself. in the end, my friend who is admin worker there told me 5 years later he moved unis had some person issues that work hammered him for and he was in same position I was in. Hoping he learned big lesson about how people deserve to be treated.
Yes, karma Is a great equalizer. I wonder though if he missed the lesson. Many times others see the connection, but the perp just sees that he/she is getting picked on. So glad you don't have to deal with that drama/dysfunction.
Hi TooSore, <<<< I get you name now!!!!!
I am happy to see so many people have strong support system at their places of work! That is GREAT!
WOW! It certainly sounds like life is a struggle.... And NO, you cant do it all! I think your choices are sound; work, exercise, friends... housework will always be there!
Good on you!
Hi Kath567, I have often wondered that too!!!! Like, "...they cant have PMR, can they?"
I'm sure it's possible, if the disease(s) have varying levels of severity, which is totally possible.
I'm sorry you had to go bak to work... I really can't imagine it.
I miss my job at the hospital (as an Admin, but I loved it! and I especially miss my work as a volunteer End of Life Companion at the Hospice... I just can't imagine I'd be able to give 100%, and if you're not giving 100% to someone at the end of their life's journey... don't bother showing up at all.
Recently two people have told me their doctors told them they had PMR, say what, a sore arm! Or another with sore shoulders probably yoga related injury. Both cases the doctors were pushing prednisone. No other symptoms! There is a huge difference between a sore shoulder, and inability to get out of bed and screaming in pain.
able to find any support networks in Canada. PMR/GCA UK was my support and source of broader information...
help on behalf of my mum. She has pmr and recently diagnosed with GCA. The GP has her on 60mg steroids...
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