Firstly, let me give a sincere, heartfelt "Thank you" to all of you who sent me a private message, or put a comment on one of my posts, asking if I was "okay." What a lovely, caring gesture... thank you!
Apparently the isolation and boredom had finally gotten to me... I started believing (...and I use that loosely) that the HealthUnlocked site (where I was sending more and more time each day) was my "reality" and that my "reality," was some kind of virtual, simulated environment.
Weird, right? Like being stuck in "Opposite Day," and "Groundhog Day," at the same time!
I found myself becoming overly involved in (and often perturbed by) posts and comments, with which I disagreed. Incapable of taking my own advise to "disregard," and/or "ignore" these posts/comments, I HAD to comment, HAD to respond, HAD to state my opinion, especially if it differed from that of the writer's! Searching for the writer's "true meaning" became an obsession. Analysing the hell out of posts/comments to find the true "meaning," was a game, which I played way to often!
I took nothing at face value. Everything had a deeper, hidden meaning and I found I could no longer relate to the posts about gardens, weather and dogs. And I was sick and tired of being sick and tired and talking about PMR, GCA, Meds, tapering, side effects, symptoms, etc. etc. etc. I craved a discussion, dialogue, debate!
Realising this wasn't necessarily a good thing (especially on a forum such as this) I realised, it was time to "take a break," and a "chill pill." So I checked-out and enjoyed some, much needed "alone time."
I read a few books, contemplated life, analysed myself and my intentions... and realised I needed to make amends.
***ahem*** Here's the part where I apologise.
If I have ever "lectured" you, given you "what for," or in any way disrespected or responded to you in a cheeky, insolent manner, I AM TRULY SORRY. Seriously, I am.
I have no excuse.
Well... other than, I guess it's possible, that I was abducted by aliens and they were performing some weird, scientific experiments on me! I mean, I can't actually prove that didn't happen, so...
In any case, I believe I have performed the necessary lobotomy that will ensure, I am not (going forward) an OVERLY passionate, opinionated, know-it-all, wisenheimer!
However... please don't expect miracles!!!!
I have not had a brain/personality transplant! I am still me! I will still RANT. I will still share my opinion; be vocal and speak my truth... I will just try to remember that you have the right to speak your truth as well and that it's okay if we disagree.
Yes, take comfort in knowing that my alone time was for everyone's safety.
I'm sure many of us can relate to the obsession of having to have our daily 'fix' of the forum and not wanting to miss out. I read, but don't feel the need to reply too often.
I can relate to the 'sick and tired' feelings - I just want to be better and be rid of the diagnosis. I don't really want to be a member of this club! I help organise the Ilkley Meet-Up, so am involved at that level too.
Fortunately, I have other 'clubs' that I've chosen to join - my rugging group and my weekly craft group, so I have my non-PMR friends as well!
We all need 'alone time', as much for our own safety as for others'.
Don't be too hard on yourself! In your real world, you have your husband, your family - especially little Max and your friends - we read how much you enjoyed the visit to your friend the vet.
But yes, we all need to balance our 'poorly' selves with something to take us away from it at times. For you, it's been the recent alone time.
Me, I'm off to RHS Harlow Carr tomorrow in search of Mecanopsis.
I was thinking I sounded a bit negative about being a member of this 'club'. Far from it - I don't know what I would have done in the last 2 years without this forum.
No need to reply to this - you'll be back to spending all day here! Wish I lived near the sea - I'd be sitting watching the tide roll away.......
I agree with Rugger. I belong to a book group and an environmental protection group both of which distract me from my PMR/GCA even though one other member of the first group has now developed PMR but we vow not to talk about it. Conversely, my local PMR support group puts everything back into the real world and it helps to talk face to face with others - though we are all dedicated followers of this forum.
Your blog is always so lively and stimulating and your personality comes shining through - don't go away for too long even if you feel you need another break.
Thank Maria40.... Up until recently I did not have the strength or energy to be in any group, other than this one; as sitting on the couch was about all I could do. But now I think I might need something, else. A book club, or neighbourhood thing...
Thank you for reading and enjoying my blog... I appreciate it!
I purchased 3 items in Supermarket cost £3,3O had money ready at checkout .Poor girl charged me £4.30 for half a hour I stood my ground and went over cost of each item .
Long queue as you can imagine eventually agreed to pay and sort it out at Customers Services.
Luckily I thought let me go and look at prices before I do that
Yes you can guess it was me .
I did go back and apologise it was totally out of character for me
I knew it was quiet but I thought it was because you were on your own, hubby away, and you were busy with your Ikea project. If you hadn't got in touch by the end of the week, thought I'd leave until then, I would have been worried and contacted you. So pleased you've and had time to reflect and spoken about your feelings but you needn't worry, no one is critical of you at all. I truly blame it on the steroids, if I'd been on this forum at the dose you're on I would have had that hectic mind too so no more beating yourself up! I'm having the same 'head' now and on a much lower dose - it is more controllable on the lower dose but I do know I'm 'doing it' e.g talking too much but hey ho I'm still me....
Hi Telian, Thank you! Yup, Hubby away and "...all by myself!" Actually enjoying it!
I have had a lot of time to reflect and since giving you, my friends, an explanation... feel so much better! Didn't think you'd believe the the alien story, but so glad you do!!! ; )
Soo pleased to hear from you, if I hadn't heard I was going to message you privately as was first thing on my mind this morning - but you have so no more said on that. If you were abducted they didn't keep you for long!... maybe you talked them to death...I know I would...nothing more scary if on the receiving end...my family and friends are so kind they just listen...then when they can muster up courage ask me if I'm alright? How dare they ha ha..
Anyway good to have you back, the silence was deafening!
If I was the first specimen, they took... you imagine their surprise! I would have "ranted" them into death and boredom and they will think twice about taking any more humans!!!
Hi, just touching base to send u a virtual hug, and tell you you are fine.
In my experience, Prednisone, at high doses takes over all aspects of our lives. I became a short- tempered, frothing, emotional wreck when I was at my highest doses, (20 mg), which is no where near the dose needed for GCA.
Ahhhh, felt that hug loud and clear! Thank you, Purplecrow!
Thanks thanks for giving me the "Get Out of Jail Free Pred Card!." I thought I was doing sooooo well, on what I consider "lower" doses! It's good I didn't actually murder someone when I was on 80mg!!!!
You’ve done it again, Given expression to the inner voice. I find that activities, like this forum can become almost obsessional. I think when you feel sick and tired and weird symptoms freak you out and your family has had enough of your moaning then it is normal to lose yourself in an understanding forum. I agree though, it shouldn’t be to the exclusion of all else especially real social encounters - but they are so exhausting - the “ well” tire me out. That’s why you crave intimacy and debate, we don’t get that from our social lives anymore. I find communicating on the site less stressful than meeting up with friends who say “ it’s as if the stuffing has been knocked out of you”. I always feel I have to put on a show with people who are physically there. So this is my bridge over troubled water.
I don’t find you as controversial as you seem to think you are. Perhaps I am a menace and don’t realise it,cue spooky 🎶 . Glad you are back, although I have been bothering you in your cave. 🐻
Perfectly stated SheffieldJane! And you are 100% correct.... I do crave "real-life" social intimacy and debate, but it's demanding and exhausting! Here, when you're "done," you're done... you just sign off, nobody cares!
I definitely miss having a "real-life," social outlet , but not sure I have the energy to keep up with one, yet.
Hmmmm, funny you don't find me as "controversial," as I may think I am. And, yes... perhaps that says, more about YOU than me! ****laughing hysterically****
PS - You can bother me in my cave anytime! As I said, I expect a "statement," soon!
Everybody cares! You inspire loads of positive responses every time you utter. Duh!
I sometimes wonder if years of being a person centred therapist and having my own therapy has made me over share and not bat an eyelid at other people’s stories. Put the kettle on, we are all coming to your cave to get real. 😘
Hmmm, you may have hit it... you have heard soooo much, that nothing is really controversial or worth an "eye batter!" I mean you think I'm normal!!!! That's gotta tell ya something!!!!! : o
PS - ...and yes, I have so felt the "love" and know I am cared about and appreciated here. I am truly blessed to receive such an outpouring of love. That is why am not leaving! Even when I'm 100% well... ; )
In the context of what we are experiencing I guess “normal” boundaries expand. We are adaptive little bunnies. For instance I am wall eyed with terror because a man is coming to take my packed suitcase to a ship that I have no intention of boarding in two weeks time. It contains all my best underwear and lord knows what else. I don’t expect that my reaction would be regarded as normal by the er normal. 😳
I know exactly where you are coming from with the underwear! Not that any of mine could be described as "best" but my bras are ALWAYS in my hand luggage because I know I can't get ones to fit just like that...
Nnnooo - it’s football, Mamici - ‘soccer’ is what they call it across the pond...... ‘football’ over there is a game mostly played with the hands by people dressed as spacemen and, to our eyes resembles WW3. Sorry - I’m feeling pedantic this morning - good to have you back on the forum tho’ & keep us posted on the Ikea project - what ARE you doing?!
Hahahahahaha! I know I was just winding peace_lover up! ...and yes they are dressed as "spacemen," and it is a bit like WW3!!!! OMG! The Ikea project has not even been started!!!! Perhaps today! I haven't been "doing" anything! That is the problem... wasting precious time. : (
Nothing you can say about “that” game can wind me up. My husband, on the other hand, who has watched EVERY GAME AVAILABLE TO WATCH ( yes it am shouting ) is easily windupable ... x
My husband is in France (because they didn't want to go to Russia!!!) with University buddies; they are drinking great wine, eating French food and watching football in Pubs!!! Today they are on a tour of the wine country!!!!! Rough, huh?
Good to know all is now well with you, Melissa. You have been missed.
Perhaps, it just a natural progression that as you improve/stabilise/reduce your Pred dosage you have less need to be so immersed in as you say " talking about PMR, GCA, Meds, tapering, side effects, symptoms, etc. etc."
I found myself craving knowledge about an illness I had never even heard of prior to being diagnosed with PMR and this forum is full of it!
Maybe it's a good sign that you don't need the forum quite so much.
Delighted to hear you will have the occasional rant - I look forward to it - but it should be because you want to not because you feel driven to do so...take good care of yourself - Kathy x
Wise words Pipalina. Maybe you should look at it this way Melissa. You are feeling less bad/a bit better 😋 so don't need this forum quite so much. You've learned a lot in a short time and we have loved your input. I love your humour and have never been aware of any aggro. Love your musings 💐😊
True... but I love the forum. I feel safe in the forum. I have friends here and people understand... I no where near ready to leave... and YOU CAN"T MAKE ME!! ; )
Hi Kathy, you sent me such a nice email on this topic but I can only access the bit in my inbox, for some reason it doesn’t appear in the thread. Thanks though 👍such much as one of my babies used to say.
Morning Jane - I seem to have deleted my post to you in error. I just went to edit the message and it disappeared from the thread! Anyway, pleased it did actually reach you however, fleetingly! Kathy x
Morning Kathy! The site is doing strange things. I have a ghostly square that hovers over the box I am typing in and if I tap on it while I’m typing I get thrown out. X
Thank you Pipalina! I believe you're right... I feel so much better than I did, that I'm actually sick of talking about my "being sick! " ... but not so much so, that I'm ready to go "hang out," with healthy people! : o OH NO! That's much too scary and exhausting!
And rest assured, there are plenty of "rants," left in this ol girl!
Welcome back. I appreciate where you're coming from. Sometimes I take a break of just a day for similar reasons, it can feel as if my health is all I think of. I don't get so deeply in as you do though and don't read all the posts or all the comments. It is important, but not always easy, to keep a balance.
Good to hear you ok. We all need time out every now and then. Glad to hear you say that you “will still rant”. Thank heavens for that. I was worried you may stop. All of your rants which I have read so far do me the world of good. When people ask me “how are you”?, I always say “ I’m fine thank you”
Then I come home and read one of your rants and realise that I’m not the only one who wants to swear at very nice, kind and considerate people.
Oh, babes, I know where you are coming from. I read all the posts but am very wary of commenting. I am scared of getting into a quagmire and upsetting anybody. I take all on board what is said, but don't necessarily agree with everything. Take care, mamici1, look after yourself and do what is right for you xx
Thanks JanboC! Ahhhhhh, I love a good quagmire! ...and I'm only half kidding!
There is something energising and exciting about a good discussion/debate! (SheffieldJane, you wanna weigh in on this one? There must be some deep rooted, phycological reason, I feel this way???? The youngest and only girl, perhaps?) And for some reason I feel compelled to respond to everything, as I don't ever want to be accused fo bing a "social voyeur!"
The baby of the family sometimes has to stand on a chair to feel heard. I am an eldest and busy around trying to look after folk. Every time I take a break from the forum you guys do something fascinating, then it’s like trying to jump into a fast flowing river.
Good on ya. Don't apologise. No finger pointing, but I get obsessive, things get stuck in my mind, I bore to the max and then withdraw for my (and others') sanity. At the moment I've not played pétanque for a week, just sitting out for a while.
I like to think PMR is a bit like pregnancy, with this forum like new mums getting together. The pain of pregnancy gets forgotten, and although one or two of those mums might remain in touch years down the line, you slowly but surely go your own way having learned what you needed, when you needed it. I've certainly slowed up keeping up with all the posts and that has gone hand in hand with feeling stronger and getting busier!
That makes sense, actually.... but I'm here for a while longer! My "baby" isn't off to school yet! I still need the support and assistance of the tribe!
Thank you Pennythedug! There will be RANTS, be prepared! ; )
xx
Meteor. You are OK. Believe me. Keep Right On.
• in reply to
Hehehehehehe... Yup, that's me! "...a small body of matter from outer space that enters the earth's atmosphere, becoming incandescent as a result of friction and appearing as a streak of light."
Hi Melissa - 'everyone' has already said it - you are invaluable to this forum which has such a marvellous mixture of personalities and perspectives. I enjoy being 'here' mostly for the diversity, the laughs, the excellent information and the generous sharing of experiences which cannot for all of us easily be found elsewhere. All the 'highs' and 'lows' of life are important to engage with and you have so candidly shared those with us - and that is what has been truly appreciated !!
Ahhhhh, there she is... my shaman! Thank you, Rimmy! I am so thankful to this community for allowing me to share the 'highs' and 'lows' of my life! ...and for embracing and accepting what I have shared! I felt terrible, that I almost turned that honour and privilege into some sort of public a conflict. : (
It has been my pleasure to engage with and you all so candidly... Thank you!!!
Any 'conflict' (not that I've observed very much here) was never caused by just 'you' Melissa - we are all adults here and must take equal responsibility ( or should) for what we say ... but of course we are all also 'human' and sometimes unthinkingly blurt 'stuff' out ! So it is always so important to read between any lines and be compassionate because we will all have our 'turn' sometime ...
X
....ahhhhh, yes! No truer words, ".... we will all have our turn."
Yes, I had missed you, thought you were away on your hols.....but I do sometimes think I get consumed with PMR, but we all can, it doesn't leave us does it....I certainly missed those lovely old fashioned pics you always send too!.....
You are not alone, well maybe the alien take over ( there have been times I've used that excuse).
I've been spending more and more time dwelling on these sites looking/hoping for familiar grievances hoping in some way there would be an answer why do we have this. I have gotten much support and cyber hugs from those who are going through this ( I guess similar to AA).
For that I am grateful. But on another note, I've found myself self absorbed in this condition.
So I concur with you. Those of them surrounding us who know nothing of what we're going through will not understand. So I am grateful that I have these groups to which I can communicate with.
Yes! It's a double edged sword, isn't it? We are so thankful for the site, where we are understood and our symptoms are acknowledged and shared; but then we get sick of having it be ALL about our illness. I
n the real world, "they," don't really understand our illness and symptoms and can't relate to how we are feeling, but we're not 100% ready to be thrown into that world! : (
I love your responses as you always seem to have a chuckle lurking behind what you say. We are all guilty of getting too involved or taking things personally when it's not meant so congratulations on reconfirming your membership to the fragile human race and the gnarly crew on The Good Ship PMR xx
HA! I do love a good chuckle! And I especially love laughing at myself, because I find myself utterly ridiculous!!!! Yes, I have "officially" reconfirmed my membership to fragile human race and the gnarly crew of the "The Good Ship PMR/GCA!
xx
Hi Melissa
I was wondering where you were? High dose of Steroids can & do affect your personality, in my case l became a much more exaggerated ‘Me’ 💁🏻♀️
The max dose I was on for PMR was 30mg & l was a total OTT Me, ordering masses of items online, getting up at 4am; sorting cupboard & drawers into the most organised, military precision cupboards known to man, running around with a pair of Secateurs trimming any out of line leaves in the garden!
I invited friends for Afternoon Tea to view my immaculate garden & my Tables were to die for but if they put anything down in the wrong place I had to straighten it & replace it to where it should be! I was a total nightmare!.......
Luckily they all understood it was the Meds & l was just an exaggerated version of me.
Maybe the Meds have had a similar impact on you & as you’re coming down you realise just maybe you’ve just been a little more ‘You’ than normal!
One day I’ll tell you about when I was on Dexamethasone plus Pred when l was on Chemo! OTT doesn’t begin to cover it!
Take Care, keep writing & musing on different topics!
You really are a glass half full Angela! Even your “ mania” sounds productive. I have never been on the GCA doses but even on PMR doses I wasn’t so useful. I do a lot of impulse buying on line for my grandchildren mainly and organise other people to do work on my “ prison” it’s lovely. The energy of Pred did not extend to my body though, quite the reverse. Amazing!
Mrs Nails!!!!! Too funny about the afternoon tea... it must have been a nightmare for them and you at the time but I can just imagine you running around behind people, tidying up!!!! Hmmm, I not even down to 30 mg yet! I did sneak down to 32.5! I'll reach 30 in a week! Wooo Hooo!
Dexamethasone, Pred and Chemo! WOW! sounds like a cocktail if I've ever heard of one!!!!
Sorry - where did this come from - why do you think you were "lecturing"?? I'm not being smart - maybe I missed something. I always enjoy your little "rants". Maybe cos I rant in my head all the time - better to get it out!!!!! ha. Keep up the good work!!! x
Hi powerwalk, Aaaaaaaa, I got into a few disagreements with a few people and took a "holier than thou" attitude! I have a tendency to get "preachy" and be all righteous and opinionated.... in doing that I acted like a jerk! I was just way to "invested" in the site and not enough in the real world. I just needed to find the balance.
I just wrote something brilliant that disappeared. It disputed the existence of normal and it had a snarling wounded animal in it ( me) It celebrated your unique, specialness, it lamented my loss of a general love for my fellow humans that used to fuel everything I did.
What is that rectangle that appears while you are typing and if you touch it, you lose the post? Is it an iPad thing? It keeps happening. 😡
It looks like a box made of faint lines and it moves around, like old manual tables we used to do on computers it is about an inch and a half square and chucks me out if I type in it. It’s a new thing. As well as clicking on someone’s post and being sent to a list of posts instead of theirs. Annoying!
You were the first person to connect with me on this forum, and so glad you did.
Welcome back to the fold and remember we are all humans and vulnerable on this challenging journey. I am trying my best to not make PMR my whole life and obsession as people now just walk away with glazed over eyes when I start sharing my personal health history with them. I used to be the one singing and dancing at parties. I must remember I am the same person inside pre PMR, just dealing with the cards I was dealt.
Hi PMRCanada, Nice to see you still here!!!! You doing ok? Have they given you a definitive PMR diagnoses? Are you on Pred still? What dosage?
Yes... We are the same on the inside, which is why it's so hard to accept the limitations we have to function with now! I too was the "life of the party!" Not anymore... unless the party ends by 7:00 and I can dance and sing from the couch!!!
Hiya!! So glad your back. Know just what you mean, when I'm feeling not so good, I seem to read on here all the time, almost obsessively, I don't always comment, but I take advice regularly from everyone on here. 😉😉😃😃😃😃👍👍👍👍
Well I'm late coming to the party!! But at this moment in time with 99 replies and still counting- I hope to be the 100th - do I win a prize?!!! I would say that you have been sorely missed and folk appreciate and look forward to your posts. Don't think I've got the energy to read 99 posts but obviously you have and knowing you you have probably replied to all of them too!! No you are needed and valued on here!!!
Three rather large holes in a 15 foot wall.... He'll never notice, right? The guy can't come with the BIG drill until Wednesday, so it has to wait! Have attempted no other DIY endeavours! No piercings. No tattoos. No head shavings. A pretty boring week actually!! xxx
Nothing ventured nothing gained, you have made your declaration of intent and you will get your shelving. 30 mgs of Pred + decision to have piercings and tattoos = remorse in my book. 😬. Sit with your boredom - mindfully. 😉
No Remorse or regrets . Already have numerous piercings and 4 tattoos... which are all for family members, who are no longer here. I haven't gotten one for Tommy yet, as PMR/GCA came on before I had decided what to get for him. It will be (when I can get it) a dandelion with the little pod seeds blowing off of it in the wind...
That sounds beautiful one of my daughters has a crystal on her shoulder blade and they both had navel and nose piercings. I had my ears pierced at 16 - dramatic enough for me I think. Boring s*d that I am.
HA! YOU, my dear, are ANYTHING but boring!!!! Art on and holes in our bodies, do not make us intriguing, alluring, bewitching, energising, inspiring, spectacular or wonderful... and yet, YOU are all of those things! Boring? Me thinks not.
Or a ruby in my belly button which nobody would see for a number of reasons. You would have got me into glorious trouble at school, I just know you would. 😇
Ahhhhh, a ruby! Cool! I have a belly button piercing (I think Muck had gone on a business trip to the UK, when we lived in Florida. I got bored.) It's a lovely piece of oval turquoise, in a yellow gold setting... I'm usually a sterling silver kind of gal, but this was striking, and then it was mine! Come to Brighton!!!! I'll take you get that RUBY!!!!
I went to the school depicted by Muriel Spark in the Prime of Miss Jean Brodie. It was awfully easy to get into trouble, which I did. With a partner in crime like you it would have been extreme. I am kidding when I imply that I would need to be led on. I have spent my life trying to remedy my character.
Last week my grandkids and my daughter (and yesterday her husband arrived) came from Sweden and I drove to Chicago to get them and managed (even though I had also forgotten to take my meds for one day..but upped 1mg. and survived!) Now to survive with a 3 year old and a 6 year old 24/7 in the house for 5 weeks!!!!!! It's fun. Fortunately my daughter is hugely sympathetic to any PMR aches and pains!
I'm just catching up with messages after being on holiday ( did the celebrating as promised and thought of you - 🎼celebrate good times, come on).
So sorry that you've not been your usual self/ usual PMR self, but very pleased to hear you're feeling better now.
I often feel like the aliens have taken over my mind and body, so that's probably the answer! PMR is due to alien invasion! Now you've scared them away we will all be saved and make speedy recoveries. Thank you 😊
YEAH! Happy you celebrated and thank you thinking of me in that celebration!!!!
Those freakin PMR/GCA aliens are everywhere aren't they????
....but wouldn't that be AMAZING if we all experienced a simultaneous recovery!
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What should the PMR pain/stiffness goal be while tapering prednisone?
Well, that was a funny old do!
My story- thanks for listening, understanding & caring
This doesn't seem right!
Azathioprine
