Those that can't do... RANT.
Revised link>>>>>
In Sickness and in Health: Those that can't do... - PMRGCAuk
In Sickness and in Health
70 Replies
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Can’t seem to access this post like usual Melissa.
in reply to SheffieldJane
I have changed link... apologies.
Ditto can’t access without having an account and signing in......
Sorry got it in the next email. Wowser!
Doesn’t the heavenly Nick White get a say in all this?
I have been with my husband for 31 years and during that time I guess we’ve had at least 4 different marriages ( to each other). He is also a few years younger than me. His star is in the ascendency at present, career wise, life wise, looks wise etc. It hasn’t always been thus, but that’s life. None of it is to do with age or years, it’s just life and luck. If I bemoaned this I would get a lecture about ego from my Buddhist inclined Jungian son. I am on my own journey. There is a vicarious pleasure in seeing the one you love having his moment in the sun.
Had to break off abruptly for a hotel fire alarm . My husband is at a meeting in Winchester. When he goes somewhere interesting I tag along and peruse the architecture, the churches and the shops. Today I’m weary so paid to have a late checkout. So far they’ve phoned me and had a fire drill. Ever felt unwanted? Winchester is fascinating historically.
I am having a run of bad mornings. I wake up feeling really ill. This improves after Pred.🤢
in reply to SheffieldJane
Oooooo, I love Winchester. If he ever comes to Brighton... let me know! Sorry you were not feeling well, this morning. I hope it has passed.
SheffieldJane in reply to
We were there for the Labour Party Conference or he was, I was on the beach and in an amazing children’s bookshop.
Get a refund. Stand there crying with your compo (compensation) face on. Staff have difficulty with tears and drama. Things can only get better when they drag on being bad for a few days. 😖😔 We want you so smile and think how unimportant those who don’t are.
Too shy. I just cowered in the room wondering if I could small smoke.
Boo I can't seem to open this either 😔
in reply to Hollyseden
I have changed link... apologies.
I can't see it either. What's SheffieldJane and Winchester got that we haven't?
Winchester? We have a member called Winchester?
Took me a minute. Yes I actually looked for that member. 🙄
in reply to Rugger
I have changed link... apologies.
This is getting hilarious, I follow mamici1 as a blogger as well as on here, so I get an email nya nya!
Ditto
in reply to
I have changed link... apologies.
I got it fine, but have to think some . You certainly keep my brain cells active . X
in reply to Chrob
Hahahahahaha! good.
wonderful!! Nick White.. oh love the name.. will not leave..!! And I love this "rant"... And remember as long as you are off in your study, at your desk, lying on the couch with computer, wherever, WRITING Nick is off the hook! And he knows that.. you might get at most more encouragement to WRITE if he is exhausted by your PMR! haha. My husband is actually a bit pleased I think..for being the care giver.. he is 9 years older than I am.. and has had a couple heart attacks (first at 37years. what a surprise!) and other illnesses (he is a real trooper and wants to be LEFT ALONE when he recovers from things (what more could anyone want in a husband! haha) and now has found his retirement calling a bit in telling me to REST. (again what more could anyone want!)
in reply to yogabonnie
Nick... Nick White. *laughing* You're right... I never thought of that! With my ability to do physical tasks waning and my creative interests/outlets on the rise... he is somewhat off the hook as I'm always off doing something! I'm sure he'd love if I let him be the Caregiver more often... but I'm still in my "Thank you, I can do it myself," phase. (stupid I know) I can see how your husband must kind of enjoy taking care of you and coddling you... a heart attack at 37! WOW! Scary. xxx
yogabonnie in reply to
He's about to turn 80 and never healthier! so all is well!
in reply to yogabonnie
Good on him!!!
Melissa,
You would be heartbroken if he did run - and he won't! He made those vows and will keep them - this is all in your pred head! You will get better and he will still be there and you will grow old together.
I have a 'Nick' - Dave, actually. He's 13 years younger than me and we've been married 24 years this year. I relate to all you say about feeling like the 'old woman', but Dave, like Nick, keeps calm and carries on. On occasions I have felt like telling him he's free to go, but I haven't, because I know he wouldn't.
When my Dad was 91 and in poor health, my 89 year old Mum had to look after him as best she could. One day, he said to me "That girl(!) would be better off without me." I wept tears behind his back and told him not to say such things. They moved into a Care Home near me and had a double room. Mum used to sit and hold his hand, which reduced the staff to tears - ah, such memories. He lived another 6 months and Mum lived another 8 years.
Me: PMR 21 months, 1 flare at 12 months, tapering to 6mg at 0.5mg / month
Me: 70 in May, Dave 57!
in reply to Rugger
Rugger, You're right, I would, I would indeed! It may be the "Pred Head," but I have always had this immense aversion to being "dependant" on someone. This brush with GCA/PMR is the closest I have been to being almost incapable of coping. Obviously, that makes me more vulnerable and dependent on him... The story of your parents brought tears to my eyes. They sound a lovely pair!!!! YOU and DAVE totally cool!
Many thanks for changing the link, laughed at your description of our illnesses as “out of satan’s Anus” brilliant description. 😂
in reply to CT-5012
Hahahahahaha, yeah I have no idea where that came from... but it felt right!!!!! : )
Hi Mamici1 good blog very reminiscent of my journey with Parker.
in reply to Estellemac
Awe.... Good!!!!! xxx
Oh I wish I had a hubby who willingly took on some of the more physical household tasks without having to be asked, which seems like nagging.
in reply to HeronNS
Ohhhhh, no! I never said anything about "physical household tasks!" No, no, no... He is lovely, but he does not see household tasks! His eyes are conditions to see everything as perfect, even when it's NOT! Hahahahahaha. ...but he is being kind, sweet, concerned, patient, forgiving, and makes a GREAT cup of tea! Also, on weekends he gets me out and about, if even for only a little while.
HeronNS in reply to
Well a little of that would go a long way towards making me less resentful about having to vacuum if I want the house vacuumed more than once a month, which I do.
in reply to HeronNS
Well, since I'm stubborn and apparently like to "cut my nose off to spite my face," I do the vacuuming. And yes, more than once a month!!! : ) I just cant change the freaking sheets by myself anymore, so I do get help with that!
HeronNS in reply to
I have always disliked vacuuming. Now my back aches. Plus I've got something wrong with my upper arms (pred induced muscle weakness?) and as for changing the sheets, takes me about fifteen minutes but at least it doesn't hurt, I think I do it in slow motion!
Estellemac in reply to
Parker used to think the Fairies 🧚♀️ did housework and shopping. That’s when the Parker training manual was designed. 🙄
in reply to Estellemac
Hahahahahahaha! Too funny!
I swear, when we first got a dishwasher, when the kids were small, it seemed like the rest of the family believed that it also loaded itself and put the clean dishes away afterwards. And also set the table and did the shopping and cooking.
Blissfully content in the belief of how marvellous technology is today
Parker training manual - could do w a copy of that.
Sigh..........So your book is now turning into a screenplay for a Romantic Comedy movie. What actress is getting the role of Melissa and who is getting Nick White?
What I got from that is that you love him so much that you are willing to put aside your happiness to release him. But, I doubt that Nick White is going anywhere. He had to persuade you all those years ago to take a chance on him/and somewhat on yourself, too. Which you did and it, to I think your surprise, worked out. And worked out beautifully, it seems.
So you gave him permission to leave. How selfless and pragmatic of you. Now STOP IT! You really don't want to go down that path. You opened the door and if he doesn't walk out, drop it. For if you bring it up again, I think that would be a bit insulting to his character. (I really don't mean for this to sound harsh so tone it down when reading it.)
I really do get how you are feeling. It's not much fun to be put inside of a dryer, spin around on the high cycle, and then find that your skin no longer fits. And you don't want to expose someone you love to this horror. But let me ask you: when your brother got ill, did you walk out of his 'door' because he was no longer the fun guy he liked being? That he didn't want you to see him like that? Nope. And when your daughter was ill, did you walk out of her door? Nope. And the others that you have lost? Nope. And did you find that it gave you pleasure to help them when they were feeling lost, hopeless, scared? Absolutely! You hated that they were going through that, but you wanted to help. And look at all of the people that you have helped when they were in their endgame! Give your Nick White that opportunity. Give him that opportunity to serve you. It will bring him good Karma.
Also, let's not forget that this isn't a forever thing. It's bump in the road -- a speed bump of sorts. Look around at all of us. Look how many members are travelling or have traveled this year. Look at the members learning new experiences such as tap dancing. Girl, I know it's tough, but it WILL and DOES get easier. And how tragic would it be if once you find yourself again, you find that you forced a gem like Nick White out of the door because you didn't want him to see you 'not perfect'. Now that would be a Tragic Comedy.
Lessons....lots of lessons we are to learn from these illnesses.
in reply to Insight329
Insight329, You have the PERECT name! Thank you for that! I have received your "talking to" loud and clear and accept your reprimand with open arms. (Hey!!!! I accepted/received something, graciously!!!!!) You actually made me laugh and cry at the same time! Our lives together, thus far, do in fact mirror, a script of a romantic drama... Boy, I could tell you STORIES, you'd need a "tena." Hahahaha! I love what you said about me accepting, so that he can can attract some good karma.... that was lovely! And I get to mask my receiving under the camouflage of giving! Brilliant!
And yes, I LOVED taking care of (and sitting with) my Mom, both my brothers and the many strangers I have sat with at the Nursing Home and Hospice. It gave me a feeling of inner joy and peace, that I have never experienced in any other situation. ...point taken.
Thank you for reading. Thank you for responding. Thank you for your support and honest feedback. Please know that it is so very much appreciated an accepted open arms.
...know also that, that although what you read in my rants are my GENUINE thoughts and feelings, they written and communicated when my head is at the endmost point on the pendulum's path. I usually swing back to centre. ; ) xxx
Hi Melissa
All of us here with partners must have had similar feelings from time to time - the last thing we want is to ever feel like a 'burden' to anyone we love. But guess what - it's actually all part of the 'deal' and it could all - and may at any time - just be the other way around - as we will all likely have a turn (even if short term) sometime.
I am another one - as I've said before with a decade younger partner - meeting when I was 40 and she 30 - and maybe someone should do some research on this in relation to *something* as there seems to be a few of us here !!? But some days I also get the 'old lady' feelings as she heads off for her 2-3 hours of exercise cycling and/or walking - as she is extremely fit and was once a marathon runner and 'elite' fitness trainer. But then I revert and think: to hell with those comparisons - as I have my own talents and energies and it is this very complementarity which has anyway always defined us ! Anyway I was never a very 'physical' gal - quite the opposite in fact - sometimes politely described as 'cerebral' with an aversion to too *much* exercise.
I also think it is better that it was ME who attracted this strange illness - it wouldn't have 'suited' my love at all - even thinking about it is mind boggling - and I have a feeling your Nick might just agree with this current version of things. But seriously I do understand how you feel - it is not 'fair' any of it - and it is easy to reflect on what was and how we'd rather it still be - we all have those days ...
in reply to Rimmy
Ahhhh Rimmy, Ever my Sage! Thank you!!! I think you are 100% correct... I believe that, on some level, Nick does in fact "agree with the current version of things," as it offers a welcome reprieve to my usual incessant, psychoanalysis of him, us, our marriage, life, the world, the universe... (his taste in music! ), as all my energies/attention are being concentrated inward. You and your partner sound very well suited... and YES, I don't even know you, but can tell already that you definitely have YOUR OWN TALENTS, which I am very fortunate enough to be reaping the benefits of, half way around the world! Thank you.
Melissa, you may not have noticed, but Knight Nick White has been standing beside you, in front of you, or beside you for the last 2 decades as you've been zooming around the planet attending to your many projects and obligations. He stood where you needed him to be, even when you didn't know you needed him to be there. He knew, though.
The reason you're noticing just now is because you have to be still for a while these days. And there he is, right where you need him.
He's not going anywhere.
Do tell him, though, how much he's meant to you, and how glad you are that he's still there with you.
That's a good man you've got there. Show him your appreciation, and your love.
in reply to GOOD_GRIEF
Good grief, GOOD_GRIEF!!!!! An epiphany!!!!! YES! OMG! Only by my slowing down am I able to see... he has always been right there... right where I needed him to be! It was my constant moving!!!! All these years it was my frenetic pace that altered my perception of our reality!!!!! F*!%K ME! (Ohhhhh sorry!!!!!)
Brilliant! xxx
WHO ARE YOU PEOPLE??? Such insight and intuition!!!!!
GOOD_GRIEF in reply to
Been there. Done that.
Bought the T shirt and sold it at a profit.
Learned it from my very own Knight.
mamici1, how IS your daughter?
I'm coming to this from another perspective .. I had a partner who was 17 years younger, we met when I was 50 and he 33. The 'other perspective' is that he died aged 53, protesting all the way, being non-communicative (not a flaw I would attribute to you :-)) and telling me he didn't need to be looked after. He felt a failure, it was always understood, without words, it was going to be the other way around. My point is not to make it harder for people to love and care for you but to cherish them and thank whatever deity or not that you believe in they are in your life. I'm also a 'pusher-awayer' so I do understand and I always dreaded the thought of becoming a grim old trout having to be wheeled around , but going through it from the other side was a lesson to be learned. Lucky you for sharing your life with stress-free Nick, he is part of your 'cure'!
Well that puts things into a different perspective, doesn't it? I'm so sorry for your loss... it must have been very difficult for you both.
I am guilty as charged. *said with embarrassed look crossing face*
Note to Self: Don't just like it, figure out how to incorporate all of this phenomenal feedback and insight into my day to day life, so that I can change my old destructive habits!
Thanks Slowdown.
Slowdown in reply to
oh no,I didn't mean to make you feel guilty, there's no right or wrong or blame, just a different take on things. You have so much vitality, I love your posts!
in reply to Slowdown
Oh noooo, just an expression!!!! No real guilt!!!! I'm good! It did make me think though... and that's never a bad thing! I loved seeing a similar situation, from the other side... and as an end of life companion (Soul Midwife) I can understand and empathise with your partner's point of view and feelings.. I've seen/heard it before. No worries we are FINE! : )
When I joined this website I didn’t realise that I would be reading such articulate, intelligent and thought-provoking posts. I expected just medical symptoms and drug discussions. Little did I realise that I would become enmeshed in peoples lives and so look forward to logging on to this site.
We have so many highs and lows with this horrible illness and it really helps to know we are not alone even when we are feeling so scared and fed up!!
My husband is 8 years older than me and well into his seventies now. Luckily he is quite healthy and young at heart but I know that he gets ‘ pmr’d out’ when he hears me explaining pmr/gca to people who have never heard of it, for the 100th time. Bless him!!
in reply to Suet3942
Hi Suet3942, I agree! Who are these people articulate, intelligent and thought-provoking and how did so many of them come to have PMR/GCA? (Hmmmm? Rimmy, perhaps another research project?) I too find myself "enmeshed in peoples lives" and this is the first place I go each morning (at about 5:00am!!!) with my cup of tea! I hope you are currently on a "high" and able to manage your disease.
Suet3942 in reply to
Thank you Melissa. I have upped my steroids from 5mg to 10 because I am still having slight head pain but because I am on holiday I take a naproxen every other day which helps. Just to tide me over till I get back to the UK. Still not sure if it’s gca.
Tell me, have you been a journalist? You write so fluently.
in reply to Suet3942
Oh, I do hope you're enjoying your holiday!!! Where are you? Someplace warm, I hope!!!
A journalist? No, but I wish! THANK YOU what a great compliment!!! I LOVE writing and would love to be able to do more with it; I just don't think I'm that good and I don't have a clue as to how I'd even go about broaching the subject. HA! No, I was a boring Program/Project Manager for American Express for 34 years! : O
Good on you for increasing the dosage... it's all about sanity and comfort!
Suet3942 in reply to
Hi Melissa, we are in Tenerife but unfortunately it’s not that warm!!! But hey ho it’s warmer than England. Still, - in a nice hotel with good food and a cocktail every evening. Can’t be bad!!
Yes I agree with you. It’s all about sanity and comfort. A couple of months ago I said to my cousin ( who also has pmr) - “ this time next year we’ll both be off the pred “. I don’t think so !!!!
BTW methinks you should take a creative writing course. You have such a way with words.
X
Thank you for putting into words how truely awful these autoimmune diseases really are and the traumatic effect they have on our lives and of those around us. I have been reading your blog/rants and wishing I was articulate enough to reply. I haven’t your talent for putting into words my thoughts and feelings and my one remaining brain cell is struggling to cope. I’m sitting, no lying on my sofa, at the other end of the county to you, feeling dreadful and putting my poor husband through fresh trauma. Two years ago I was diagnosed with PMR and like us all my active life suddenly ended. Yes, changing the sheets became a monumental task. It’s turned my normally happy personality into a bad tempered cow. There are days when he needs a tin helmet and flak jacket to survive. I could go on.
Then yesterday as if things couldn’t get worse, I had a fall. A fall. It makes me sound as though I’m in my dotage, I’m 62. I fell in our sitting room, hitting my face on a side table, knocking my glasses into my face. There was an impressive amount of blood and I’m now sporting impressive bruising. Let’s not do these things by halves! I really could do without this on top of the PMR. We had a stairlift installed when my 92 year old mother was living with us. Since she died I’ve been using it to transport stuff up and down the stairs, it is now transporting me....and it’s too damed slow!
What I’m trying to say to you and to all those wonderful people who replied is, thank you. I have been fighting to keep my ‘independence.’ I have never liked asking for help. I too would cut off my nose.... I would do without before ask. Yes, I do the caring, the organising. Am I control freak, I don’t think so. I’ve just always been in a situation with my family that I’ve had to be the strong one. Then 16 years ago I met and married this wonderful man, who bless him is trying to look after and care for me and how do I thank him? By fighting him every step of the way. So I am now going to accept his help gracefully and thank him.
So thank you for putting into words, so wonderfully, how we feel and teaching us valuable lessons on the way. Bless you.
in reply to Jean56
First off... THANK YOU!!!! I am so happy that you are enjoying my Rants and that they resonate with you. I too struggle with diminishing brain cells, lack of concentration and of being easily distracted! I actually don't do well with "face to face" interactions or conversations where I have to take in, and assess what the other person is saying... I LOVE writing because I seem to be okay expressing my thoughts and feelings.
I am so sorry you fell, how awful for you! I have black and blues all over my legs from where I walk into things... it's like my depth perception is off and BAM!
*laughing* Hahahahaha. If I am teaching anyone anything, it is by pure accident! And I should be learning fro all this and I'm not 100% sure that's happening... Oh, I have "aha moments," but the next day I'm back to the same ol me!!!
And I'm definitely a control freak and fight my husband every step of the way...
Don't be so hard yourself... we are all just doing the best we can under some pretty horrific conditions... Where do I think these diseases (PMR/GCA) come from... well "Satan's Anus" of course!!!! : )
I will be sending you healing thoughts.
Yes, your sitting ‘listening’ to and supposed to be engaging in a conversation, what is really happening is you’re watching their mouths move but you haven’t clue what their talking about. I’m definitely becoming more and more antisocial. And if anyone else tells me how well I look, with my fat face or, and this is one that really annoys, how well I sound. Dear god it’s my body that’s the problem not my voice, I will not be responsible for my actions.....given it’s a good day and I’ve got the energy!
Thank heavens we have this fantastic site and contact with knowledgeable understanding sufferers. Plus we retain a sense of humour.
Hahahahahahahaha, you have me laughing out loud now!
Thank God the stupid diseases and the steroids don't make us "cranky," as well!!!
: )
AmeliaAnn in reply to
Thank you Melissa for beginning this exchange of wisdom and experience, I feel privileged and blessed to be part of this special group of people. Inspiring reading on a cold snowy morning.
in reply to AmeliaAnn
Thank you AmeliaAnn! I'm happy you found the exchange inspiring! I love when something I write resonates with others and starts a healthy, dialogue... it helps to remind me I'm not alone and f others can get through this hell... so can I!
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