Those that can't do... RANT!
rantingsofamadwomanblog.com...
Warning; Surprisingly... there is no warning needed! There are no expletives used in the writing of this blog post! ...what is wrong with me?
“… but anyone looking at you, wouldn’t know you w... - PMRGCAuk
“… but anyone looking at you, wouldn’t know you were ill.”
73 Replies
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Totally agree with you ! I think we do go to great lengths to appear ‘normal’ on social occasions. I have just returned from lunch and a mooch around the shops with a friend. ‘You are having a good day’ she said. Very true but she can’t see me now in my recliner chair totally whacked! Too tired to make a cup of tea.
But hey, you know what? It is good to seem normal for a while
in reply to Pat9442
Hi Pat9442, *smiling* Yes, it IS good to feel normal for awhile! Good on you, lunch with a friend and a "mooch around the shops!" I hope there was someone around yesterday to make you that much needed cuppa! ; )
So true all of it. Glad you’re feeling so much better if only for the weekend, rest and recover. 😴
in reply to CT-5012
Thank you CT-5012! Sunday saw the worst of it... yesterday not too bad at all!!!! : )
It’s exactly the same for mental health too, we put on a brave public face... when really we can’t wait to be on our own and wallow.
in reply to
Hi Sheffield-Karey, You are so right... I have panic/anxiety attacks and usually if I am with friends or family members when I feel one coming on... I can "fake" my way though it until the Diazepam kicks in. No one is the wiser...
Good for you Melissa! You put so much energy into life, it is no wonder you end up on the couch!!
in reply to stellafmdm
HA! Good point stellafmdm! Perhaps if I spread that energy out, more evenly, across the minutes, hours, days, weeks... I could avoid the dreaded couch! : )
Wonderful mamici1 that you had such a good time with your friends, and even more wonderful that you felt good and acted 'normal'. I wonder if we behave like we used to, because the presence of friends/others gives us a different environment/ different conversation, and , if over a meal, different food. Maybe, just awhile in a DIFFERENT situation, which is pleasant, wakes something up in us.I had coffee with 2 pals, Friday morning. The coffee shop is only across the road, but I am not getting out much due to my breathing problem. The change did me good.
in reply to karools16
Thanks karools16, I did have a GREAT time! I do believe you are right! Being around new people, with different perspectives... talking about new things, eating different foods, sharing new experiences... it maybe does awaken something in us, that gives us that extra boost! I so am happy to hear you got out an had coffee with friends!!!! It's important to have these face to face social interactions. I hope you get out again this Friday! : )
I had a similar weekend,it was my birthday and we went to stay with family in Eastbourne from Thursday-Saturday.I put on a great performance and no one mentioned PMR.I acted well.
On the journey there we were held up in sleepy Sussex due to a police chase.The armed police got out of one of the 4 police cars and eventually arrested a couple of blokes.It was very scary and right in front of us! I was a quivering mess and imagined being caught up in the firing line and being shot dead by a stray bullet...As we drove off my arms and legs had turned to jelly and ached! I could feel the tension running through my body.
Apart from that we had a good time,ate loads including plenty of cake,visited beautiful places,coffee stops,cream tea,long drives and short walks.
Sunday at home I felt drained and more like my pmr self !!
in reply to Sandradsn
Wow, Sandradsn! Firstly, HAPPY BELATED BIRTHDAY!!!!! I hope you really enjoyed your special day! It looks like we both put on a good performance, huh? Good on us!
BLOODY HELL!!!! That car chase scene must have been horrible! I can imagine you were left feeling achy and like jelly! I'm happy it didn't spoil the weekend for you!
And Sunday... we were mirror images of each other! : )
Hi mamici,it is so true,we may look fit and well but are often far from it!
in reply to Grants148
Far from it indeed Grants148, far from it indeed.
We're sociable creatures and respond to other people's energy, which takes us out of our everyday selves. We need people (of the kindred spirit kind) We forget the focus on illness and take pleasure in good company and conversation, a huge boost to mental well-being which has a very positive effect. I know I always feel extremely well, if very tired, after spending time with certain people. I think it's called happiness. And do you remember, pre PMR, being with 'emotional vampires', people who leech all the positivity out of you .. PMR is a vampire.
in reply to Slowdown
Totally agree Slowdown! I am a big believer in other people's energy and it's impact (positive and negative) on us and our moods and energy levels. I am all too aware of the "emotional vampires," out there... And "YES," you hit the nail on the head, GCA & PMR both HUGE emotional vampires. They just suck the life right out of us! We need a silver bullet! : )
PS Hmmmmm? maybe that our Pred!
What a perfect weekend! I think partly, what you did was plan well and thought ahead and minimised the strain. It’s an adjustment, a transition that you’ve made so well that you hardly notice now. In fact your perfectly considered event probably went far better than events when you were well, that evolved more organically and therefore more chaotically.
Also from following your posts and talking to you, I do think that you are on the road to recovery . I am sure that I read here that GCA could be shorter in duration than PMR, more definitely finite. I wonder if the massive shock of huge dose Prednisalone blasts it to kingdom come.
Then of course there is the power of happiness in the company of good people, that can give you more spoons, even if they are dolls’ tea set ones.
That was a happy inspiring post and I recognise similar experiences in my own life and all the adjustments to make them happen. Well done sweetheart. You just can’t keep a good girl down. 👏👏👏
in reply to SheffieldJane
Thank you Jane, It was a perfect weekend. Yup the pre-planning helped a lot!!!! And, yes... past events have not gone as smoothly because, although I pre-planned, I don't think I was as calm and methodical... I usually try to over-engineer or over-analyse everything, which cause chaos! This time I knew what I needed (in the simplest terms) and I allowed OH, the wine and cheese experts and my guests to help facilitate that simple plan...
I love your comment about the extra spoons being dolls’ tea set ones! It brought about an image of my big, old, veiny hands holding these teensy, tiny, fragile, little, china spoons!
"You just can’t keep a good girl down." ...and I suspect you know this from personal experience!!!!!! : )
Inspiring Mamici!
You planned everything so well, and having a talk with your friends beforehand must have taken some of the pressure off.
Good company and a change of scene can give such a needed boost out of “sick world” where thinking about and responding to the illness seems like all we do. It can just suck your spirit dry after awhile.
Here’s to many more days like this on your road to recovery!🥂
in reply to Mstiles
Awe, thanks Mstiles! Yup, it's unusual for me to admit a weakness or vulnerability, but having these diseases has found me much better at doing just that. I had a very honest conversation with my friends and let them know what they might expect... once I knew that they knew... it took a lot of pressure of of me.
Here's to ALL of our recoveries 🥂
xx
Mstiles in reply to
💕🙏
Well I think congratulations are in order for such a lovely weekend all so perfectly planned and executed. You knew how long your guests were going to be there and the timetable in your head switched off when they left! You might not agree but I believe your OH was paying you a compliment following what he knew was a tiring time for you. I think you did/do extremely well, I couldn't do what you do now let alone in my first year of illness. Don't think I've ever taken offence at being told I look well, a bit bemused maybe when I felt so bad and wondered how they couldn't see it!
You'll be fine, think of the lovely weekend you've had and that all the effort was worthwhile. xx
in reply to Telian
Thanks Telian! Yes, it was fairly organised day by day hour by hour... and thank goodness it all went according to plan! YOU ARE RIGHT... he was paying me a huge compliment! He read the blog and said it wasn't him being suspicious of my "sick/well/sick" behaviour; He said he was genuinely looking at me in "awe," amazed that I had pulled it off so effortlessly, and just wondering what our friends thought, as they had heard so much about how the illness had impacted me (us). He is one of the good ones.... xxxx
Telian in reply to
Good my intuition was right, didn't want to have offended you that's all, and yes he is doing a good job tell him and very patient with it! Re your friends, they will go away not understanding how you feel as you put on such a good show! as we all do. My stage is the weekend after next for my 70th!!!!
Great planning Melissa and definitely an excellent 'performance' ... Like Bowie you did both and didn't allow yourself anything but that mindset - and it worked !! Knowing it is temporary and you will be able to rest again soon also helps. But yes it could over time become more 'habitual' as you get better and better - with less and less need for the post or recuperation phases. Anyway it is wonderful you had such a good time and able to 'forget' the whole GCA straightjacket for a while - happy for you !!!
XX
in reply to Rimmy
Thank you Rimmy! "I'd like to thank the Academy...."
And Wow! Did you just compared me to Bowie? Cooooooool. : )
Yes, I knew I was working within a finite timeframe and by Sunday noon, I could (if need be) collapse. The nap on Saturday helped a lot and was factored in, as I wanted to have a nice time and enjoy Saturday night's dinner plans...
I do like the idea that this behaviour, over time, could become habitual, "..with less and less need for the post or recuperation phases.
xxxx
I found an expletive and I’m shocked Melissa truly shocked! 😛
😂
in reply to SheffieldJane
Nooooooooooo????? You're not counting "which on Friday afternoon, was bloody HOT!" Are you????
in reply to SheffieldJane
Or was it "it was “pissing down” all morning?" OH COM ON...
SheffieldJane in reply to
Two expletives! Only kidding mate, I love your missives. I forgot that I posted that. Giddy after FaceTime with Theo I expect.
in reply to SheffieldJane
Awe... THEO!!!! How is he? Did you have a nice chat????
In America neither one of those is a swear word so they do not count!!!!
I refuse to accept. : (
SheffieldJane in reply to
You also think that an extremely rude word that begins with W and ends with r is ok. I am making myself laugh if not anyone else.
Theo and I are very definitely still an item. He jumps for joy when he sees me on the screen. He said that he did something “ accidentally “. He’s only 3, great vocabulary!, They are coming for Christmas and we are going for Easter. It is more bearable than I feared but I am still winged. He wants me to sleep in his room when I come to Australia, he’s going to set up his train tracks for me. 🧡
Don’t forget to let me know if you are meeting for coffee before the September event. I will be the rounded one with the moon face er.........
in reply to SheffieldJane
Windier? Weather? Washer?
Okay... I'm the one up at 3:19 am looking for "bad" words that begin wit "W" and end in "R!" Who's got the problem here!!!! : O
Oooooooo, how tender..... "He wants me to sleep in his room when I come to Australia, he’s going to set up his train tracks for me. 🧡" Made my heart melt!
Okay... rounded and moon face... that will be, Ummmmmm, ALL OF US!!!!! ; )
3 mile walk. How lovely ! I can’t “fake” that part 😱
in reply to aladymo
Hi aladymo, I had no idea I could do 3 miles!!!! I have walked 1.5 into town... when we were in York, I did maybe 2.0, but this was a slow, leisurely walk by the sea, into town... with a taxi ride home!!!! I surprised myself!
Know exactly what you mean, I never realized how much energy one uses when socializing. It is so good to be with ones friends & chat and laugh a sort of be perfectly normal and amazingly feel it, be it for just a few hours. My friends have been brilliant and v. caring for over two years now but it's gone on for so long now I am very aware that being with a friend who can be such a wet blanket is quite testing - which perhaps makes one try even harder to be fun, but my goodness it doesn't half take it's toll, the next day is always a blank out. I just loll around at home, usually with my two Scottish Terriers cuddled up to me on the sofa and wonderful long-suffering husband cooking supper again!!
It's an impossible illness for anyone who hasn't suffered from it to understand.
I love your 'rants' - like you with GCA I have gone through all the same emotions and roller-coaster ride.
in reply to Sho-Sho
Hiya Sho-Sho, Believe me if I had the Scottish Terriers they'd be cuddled up on the couch with me too... but I cuddle alone with a big old duvet! Oh boy... I don't know if I could be with a friend who was a "wet blanket," and "quite testing!" I do not think I have THAT much energy. My friends are cool and I guess don't see me enough to get sick of me! Hahahahahaha, nor I them! Thank you for reading and supporting my rants!!!!! I appreciate it!
Sometimes you just have to stick two fingers up! Good on you mamic1
in reply to Mike1964
I agree wholeheartedly!!!!!
Once again you've managed to capture what many of us (who have an AI condition) experience and feel. Your words resonate with me as I reflect upon your wonderful weekend, and mine as well. Your planning was superb and resulted in an enjoyable time with your visitors. This in turn lead to a feeling of "normalcy", which is something I am continually in search of given my PMR symptoms and disease progress. Not only do we look for normalcy, we attempt to create it.....through social connection, exercise, even sex. Anything that results in me feeling "normal" (and forgetting that I even have PMR) is highly valued.
This past weekend we hosted a wedding reception and housewarming party. This included visits by my three aunty-moms who traveled for all regions of Canada to stay and celebrate with us. I had been planning for this for months, cooking and freezing ahead of time, choosing ways in which we could incorporate aspects of the many renovations we've completed and our love for one another since our small wedding last fall. During these big life experiences I was struck with PMR (after 5 months of non-diagnosis), which cast a negative vibe (along with chronic pain) on a time that should have been exciting and filled with happiness.
It was important to me that we now have dedicated time and focus on these events to celebrate them "normally" and I so enjoyed hosting family and the party. Lots of laughter, good food, shared stories.....even some dancing and singing. And through it all, for the most part, I felt normal, I even forgot I have PMR at times. Yes, I was invested in presenting my most "normal" self to those around me (sometimes intentionally, sometimes I genuinely felt normal). No wonder some of the guests were not even aware of my PMR. Indeed, PMR at times feels like an "invisible illness", however I a mindful of my role in that invisibility. People know where we are at based on what we share. For those of us with an AI condition, this will change from week to week, day to day and hour to hour.
Please keep up the great writing Melissa. You are gifted, and vulnerable, and self-aware, strength-based, and an inspiration.
PMRCanada, Thank you! Thanks for sharing (and may I say so expressively and eloquently) your plans for and execution of, what sounds like a truly wonderful, memorable weekend. I love that here was, "...lots of laughter, good food, shared stories, and even some dancing and singing!" Sounds perfect. Also, I particularly like your use of the word "invested" above... { Yes, I was INVESTED in presenting my most "normal" self to those around me, sometimes intentionally, sometimes I genuinely felt normal} It implies that we perhaps have some modicum of control over how come across and are perceived by others... and maybe we do? Maybe low energy, depression, pain, low self esteem, self doubt, meds, etc. see us fall victim to being a "victim," of our illness. (?) Not sure I even know what that means... it's 3:48 and it's been quite awhile since I have been up in the middle of night on a writing binge!!!!!! : ) Be well... and thank you again for your kind words and continued support! xxx
No expletives oh dear I might be bad news then I tend to swear sometimes sorry can’t seem to help it xxxx
I couldn't believe it when you mentioned Boone's Farm wine, Mateus rosé, and processed cheese--Ritz crackers are still around. In my memory they were only available in the Ann Arbor Michigan of the late 60s and early 70s! 😁🤣☺
So - if you know where to look - is Mateus rosé! And Ritz crackers are vailable in any small corner shop here in Italy!
What has the world come to? I bet there is no Boone's Farm Cherry, Strawberry Hill and other 'fruit' flavored sweet wine from yesteryear around in Italy. Mainstays of the Hippie and student world of the Vietnam war era. They used to make lamps out of Mateus and straw-covered chianti bottles!
Oh I remember Mateus and Chianti bottles. Candlesticks.
in reply to HeronNS
YES!!!!!!
HeronNS in reply to
You know what else I can remember from those days: brick and board bookcases, and tea chest tables, or storage boxes.
in reply to HeronNS
Or how about the big, round, wooden, wire spools as coffee tables? Hahahahaha
ebay.co.uk/itm/Wooden-Cable...
HeronNS in reply to
Not something we ever had but a good idea!
in reply to Joaclp
YES, they did!
in reply to PMRpro
Cool!
in reply to Joaclp
Worcester, Massachusetts in the late 60's early 70's!!!!!
Your writing rings so true for me. How were you feeling by the end of the trip? I tried a 3 day trip to a friend’s cabin. I did not join the hiking, did relaxing activities, but did not realize I should have taken time to lay down and relax. I felt horrible the next week. It is such a delicate balance of how much one can do.
I think it is wonderful you had such a great time.!!! Good for you.
in reply to Dream21
It is a balancing act!!!! And you never really know what's going to push you over the edge. Like you said, you dd relaxing activities and still felt horrible.... Thank you, I hope you are back into a routine and felling better!
sorry for late reply - Its a bit like dancers who still dance with a damaged ankle - the adrenalin kicks in. But then you pay!!!!
in reply to powerwalk
Yes, I believe you are 100% correct!!
I think it is really important for mental health to do normal things whenever you feel up to it, even if you need rest afterwards. Though I have to say that this is something that I am really struggling with at the moment. I am on holiday by the coast this week and my energy levels are so low that I am finding it difficult to leave the holiday cottage for even a couple of hours a day. I feel like I have wasted my time and money in getting here. It's very dispiriting.
This thread is over 5 years old and the author has long left this forum (that is why it says Hidden) so will not see your reply.
Thank you. How strange, it popped up in my emails, so it didn't occurr to me it might not be recent.
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