Those that can't do... RANT!
rantingsofamadwomanblog.com...
Warning; This blog post may contain... Oh! Nope it doesn't! Hmmmm? How'd that happen?
No More Mr Nice Guy!: Those that can't do... RANT... - PMRGCAuk
No More Mr Nice Guy!
60 Replies
•
With you all the way!
And me!
When someone wants me to do something I probably won’t be able to achieve I often find the response “I’m not very reliable these days (unsaid: you might get let down..) “ often has the required result. 😉
in reply to peace_lover
Hmmmm? Sounds like an apology to me.. just sayin.
peace_lover in reply to
Nah, it’s the look you give to go with it that counts... 😀
in reply to peace_lover
Ahhhhhh, the "look!" I love it!
Some people just won't take no for an answer!
in reply to HeronNS
Hmmmm? Not sure I agree... I think maybe we just give up, with the more difficult people. We "wuss," out and give in.
HeronNS in reply to
Not wussing. Simple fatigue. But I did give my persuasive friend fair warning that I wasn't well, not the person she'd known a couple of years ago and I really didn't think I was up to the task. And I wasn't and quit while everyone was ahead, before I caused damage.....
in reply to HeronNS
Oh, sorry... I wan't implying YOU were a wuss! It was just a general comment (based on what I sometimes do!) .... if someone is strong and persuasive I sometimes (not often) but I allow myself to be persuaded. I strongly believe WE have the power though... if we believe we know what is best for us, and we "stick to our guns," (whatever that means!!!) we can get ALL people to take NO for an answer... The power lies with us!
HeronNS in reply to
And I was saying I didn't/don't have the power because I'm not the person I used to be! Bit of a catch-22. Damned if I do, damned if I don't.
in reply to HeronNS
....I believe it's in there, Heron! Dig deep. Dig past fatigue to say "NO!" You must summons the power now, when you need it the most! ...and you're really not damned if you "don't." If you DON'T do something you really don't want to do... you win! : )
I know I'm being twee.... and I'm so sorry you're experiencing fatigue... I hope you feel stronger soon!
xxx
You’ve done it again, thank you. Putting into words how we feel and what we do. Yes, we want to appear as ‘normal’ as possible. Yes, we don’t want to let people down. Yes, we finish up trying to be super human. Who suffers we do. I know right at this minute if I don’t take this fact on board and look after myself this damed disease is never going to go.
Your quote says it all Mamic1.
Knowing your limits is very important. I know mine now and if I can't manage what others require it's "tough"!
I could feel your rant and I hope you feel better for it now - in case you don't believe me you are right all the way....just do what you need to do not what others think you should xx
in reply to Telian
Thanks Telian, I do feel better for it.... it wasn't so much for me but one of our compadres posted a comment this morning, about her family keeping her out too long and how she felt ill and someone told her she "looked fine," and it just infuriated me. I'll blame it on the Pred.
Telian in reply to
It's a psychological minefield - our reactions can be very spontaneous when on Pred, we're like a dog with a bone, never going to let go until we're satisfied there's nothing left worth having. My son notices when I'm like that and sometimes when I'm not letting go he approaches it carefully by asking if I'm alright and that he doesn't mean to sound awful but do I realise how I'm acting? He's always right - that's when there is no tomorrow for me and everything has to be done NOW - it does diffuse the situation when my anxiety is so rampant.
I do think we have to make our case before hand with family and friends and stick to it, if we say we might not be able to stay the course and then do who's going to believe us?
On hols with friends, prior to diagnosis, we parked up in Devon with a 1/4 mile, uphill, walk to the destination (and unfortunately for me, shops - this friend has to venture into all). I should have said 'no'. Actually I did say 'this is going to be really challenging' but was immediately shot down with 'you'll be fine, it's not far' and 'we can bring the car nearer at the end to pick you up (which was impossible). She then shot off at 100mph. It still gives me nightmares. These days I am extremely assertive on the verge of being rude if my wants and needs are dismissed in this way! Never again!
in reply to Pongo13
Good on you for becoming "assertive," Pongo!
Ya gotta do, what ya gotta do... : )
an other excellent piece of writers work, where I and surely lots of other pmr/gca sufferers can relate to. Yes I am ashamed of being ill, try to hide it, but most of that behavior is based on the fact that I do not accept to be so restricted. My daughter understands my fatigue and stiffness even without a word, but my son makes it smaller, by saying o I am only 50 and already stiff after sitting a while. But to be very honest, when my parents grew old I really took care of them, but there also was a part in me that was afraid seeing them deteriorate or going downhill ( I dont know what is the proper term in English) It confronted me with my own mortality.
Maybe some others are a bit like that in trying to play the disease down?
Thanks again mamici, your input often makes me think - in a good way-.
Ahhhhhhh, thanks to YOU Zofitmogelijk! You explain it beautifully and I particularly like your admission; "...I am ashamed of being ill, try to hide it." We all have our own reasons for doing this, but I do believe most of us are ashamed or embarrassed by the fact that we are ill. And yes... it all boils down to us facing (accepting) our own mortality..... : (
I am happy my rant prompted you to think about it... in a good way! : )
This is soooo me!! I can relate so much👍😊..overwhelmed,cranky,achey,off,not right...I've been saying for 2yrs 8mths..I don't feel like ME anymore😯I do pretend to be normal but I'm not..Why?
Great rant Melissa 🙄
Me to ,fed up now.
in reply to Sandradsn
Hehehehehe. I pretend sometimes too! Why? ..did you say "Why?" ...because my lovely, you want so badly to be "normal," as we all do!!!!
Thank you... thanks you for supporting me!
So well written Melissa! - says it all!!! I'm getting better at saying "No" but a long way to go on some days.This condition does restrict us - the old"us" so perhaps we need to invent the new"us" with different priorities, different interests, different perspectives and sometimes perhaps necessitating different friends! ( thinking about Pongo's experience) Glad you've now been able to be more assertive Pongo
I felt,like you Melissa, so annoyed that the previous person had been put in difficult position by family and friends. As you say we are our own advocates and for me I need to continue working on that one. I also agree with Telian to stick to what we say we can't do and not bend under the pressure. I know sometimes I've said I can't do something and it has made the other person think about it more. You're so good at writing a "rant!" Xx
in reply to Jackoh
Awe, thank you Jackoh! How kind of you! We all could all probably learn to be a little better at saying "No." I like your idea of inventing (and perhaps embracing) a NEW us!!!! One, "...with different priorities, different interests, perspectives and sometimes perhaps necessitating different friends!" Revolutionary, but I like it!!!!
Thank you again for reading and for your support!
Well, Melissa, this question really resonates with me...
"Why are we allowing ourselves to be victims to the wants and needs of our friends and family at the expense of our own well being?"
Personally, I don't think we subconsciously do it to get our "old" selves back but rather we are so afraid that our "old" self no longer exists and has been extinguished by the disease or illness that continues to try to steal our very essence that every so often we make a very conscious decision to try to prove differently. Even if it doesn't work
When I do succumb to the well intended pressure of well meaning family or friends and slap on my lips, a few layers of mascara & gel my locks I look anything but ill. It goes one way or the other - I either bail out part way through the occasion or I am last to be dragged out of the venue while begging for another Tamla Motown number...figure that out! xxx
in reply to Pipalina
Ooooooo, great hypothesis Pip! I love it!!!! "....we are so afraid that our "old" self no longer exists and has been extinguished by the disease or illness that continues to try to steal our very essence that every so often we make a very conscious decision to try to prove differently." Very profound, and it actually sounds quite reasonable!
I know, I often wonder if my "old" self will be there when I come out on the other side of this nightmare...
PS - "Tamla-Motown" was the name of the British arm of the Motown Record Corporation. It was established in 1965 to handle distribution of the Motown company's records in the United Kingdom. "Tamla Records" was also the name of the original record label that Berry Gordy found it, a year before he founded Motown Records."
Don't you love GOOGLE???
Pipalina in reply to
Morning to you...in response to your PS - I was lucky enough to attend one of the tour dates of the original UK Motortown Revue 1965. Wolverhampton as I recall! It did indeed feel very special. xxx
in reply to Pipalina
WOW! I just looked it up... You were there??? Amazing! You saw some pretty incredible acts! Lucky, luck you!!!!! To see all those acts together was very special INDEED! xx
Hi Melissa - women in particular - no surprises here have 'soldiered on' through goodness knows what stresses - pain, illnesses and sheer 'disaster' to keep their children and families going' - cared for and safe .... I recall my mother who was very ill (I realised years later) - cooking us dinner as small children when she could hardly stand up - my father was 'absent' as usual. This is a dimension of what you are 'ranting' about I am sure which doesn't get the attention it should - even in this #MeToo age - and we all know this really.
And there is also the other HUGE 'elephant in the room' - the thing about 'Invisible Disabilities' (lots & lots now online about this)- or the very basic notion that if people can't 'see it' - it 'isn't there' !! Stumble into a room - say bleeding (even a small flesh wound on the head can do this) and people will likely react - after all who likes blood on their carpet !? - but wander in and say 'I'm not feeling well - I don't have any energy' and you'll be lucky to get a 'blink'. Even when I first said to my doctor 'I feel tired and fatigued all the time' he replied 'so do I ' and 'so do half the people I see every day' ... and this would all be 'fine' of course if we had a short term problem - after all everyone does feel bad from time to time - our issue is that it just goes on and on and seemingly 'on ....' and 'they' get bored with it - after all many people with PMR and or GCA don't look *that* 'bad' ...
Of course many of us should be more assertive - and say 'No !!" to things which are too hard but then we are also pulled in many directions - we DO want something resembling 'quality of life' while we are anticipating a future which isn't beset by these wretched conditions and so we often push ourselves too hard. And then there is the 'explaining' - usually several or even many times - about what is 'wrong' with us and why ... and I haven't yet come up with a succinct enough version of THAT as yet ....
I can also relate to not wanting to be 'nice' about it all but I also have come to realise some of the people who seem less than receptive to 'getting' what's going on with me often have some of their own 'stuff' happening. THEY for many reasons are also 'tired', sometimes depressed or conflicted or unwell or .... well the list of life goes on and I'm not sure what is reasonable to expect of anyone anymore. In the meantime I avoid as many stressful and demanding situations as I can - which has made me a bit antisocial - so I generally just get ratty with myself first and my partner 2nd ... and then I know I am FAR from a 'NICE gal'
Rimmy
XX
Hello Rimmy - very interesting reply...
To comment on your mention of "And there is also the other HUGE 'elephant in the room' - the thing about 'Invisible Disabilities' (lots & lots now online about this)"
Last week I had a private consultation with a (very expensive) Rheumatologist. Part of the discussion was about my medical history - in particular, my ME/CFS, Hypothyroidism, suspected PMR and associated symptoms.
He then turned to me with pen poised and ACTUALLY had the audacity to ask me..."So, apart from that is your health generally good?. I must have looked stunned at the question because he quickly moved on and I didn't answer.
The number of times I have been insulted by this question over the years is too many to list - HUGE ELEPHANT indeed!
Best Wishes - Kathy x
in reply to Pipalina
OMG!
Dearest Rimmy, As usual, you effortlessly add deeper, richer more colourful layers to the tapestry I try (so clumsily ) to weave. You see that alternatives and/or the complimentary perspective(s), and you tie it all together! Thank you!!!!
You are right again... about it all, but particularly about the fact that, "... we want something resembling 'quality of life," How very true. And for this and and many reasons, we perhaps become our own worst enemy.
thank you.
xxx
Brilliant ad always. So true.
in reply to
Thank you!
You have said it all. I have just come back from visiting three different old friends over 10 days, and although they are kind and understanding I try to push myself to be as I was. In one household the husband recently had serious heart attack, still goes to the wood to chop logs !!!, another is on Chemo after breast op, and says she is fine if this is all it is nothing to complain about!!! and the third has RA for the last 40 years, since she was 30. She gets it, told me a few days before she had gone to a family get together and had to leave early, had hung on as long as she could, nearly passing out.
We all do it as don’t want to be thought of as moaning hyperchrondriacs.
With the first two don’t even mention how I feel as can’t compare with them.
With third RA friend, what a relief to be honest and say I feel bl***y awful. Had a great time agreeing what a relief to swear, quoting the research on Swearing and pain relief, you posted in your reply to me a few weeks ago
Melissa, 🙏🏿
Will be forwarding your rant to her, hope that’s OK with you.
Thank you again as your rants articulate what we all experience, that sounds a bit stuffy🤨 but true.
in reply to Marymon
Oh my goodness, of course it's ok with me!!!! Thank you!!!! I'm flattered.
I think it's interesting the friend with RA, gets it! Two comparable illnesses.... hmmmm?
I'm sorry you felt that you had to push yourself to be as you used to be (...maybe as they remember and love you?), but we all do it! WE've come up with a lot of reasons that we do it, and all are valid... I just feel if we are more aware of it, aware of what WE are doing to ourselves, we can push back a little bit.
Thank you for sharing and thank you for your support!
I have noticed a stark difference to the way family and friends have reacted to my hip replacement operation and time on crutches and my 3 years of PMR. I've had lots of visitors, offers of help, cards etc since op in May.
I have in mind that this is also the difference between physical illness and unseen mental illness. I think my family and friends were embarrassed when I had depression in the 90s and ignored it.
in reply to Valnvaughan
Isn't that interesting! Yes... the "seen" versus the "unseen." Rimmy mentioned that also and Pipilana too!
And yes... my family did not talk about (or validate) my anxiety and depression, which 30 years later was validated as undiagnosed/untreated postpartum depression! They could not see it, I looked okay, it was al in my head! Funny how the mind is so quick to validate what it "sees," i.e. blood is bad... but what can't be seen i.e. depression or an AI disease. I guess it's hard for the mind to take in... (?)
Yes - we probably do want to appear normal - when we can - only for it all to come crashing down around us very quickly! I think you covered it all there! I've a feeling I'm going to be in the bad books with a member of my husband's family cos I didn't do something - but honest to god - I just haven't the interest or the energy. Of course now I'm stressin over it even though I keep telling myself to forget about it. But good on you - well said!
in reply to powerwalk
YES! It's not bad enough that we often give into whatever it is we don't want to do... if we don't give in, we often have to deal with the icy, cool consequences of friends and family members... and then, when things are nice and cold, we put make it worse by piling on the GUILT! WTF? It is a vicious circle!!!
Don't worry about Hubby's family member... you didn't marry them!
Thank you so much as your rantings articulate what so many of us feel. Your comment about 'know that she is gone' is something I find it difficult to come to terms with. Loss of any sort triggers a grieving process so I looked it up and shock/denial, pain/guilt, anger/bargaining, depression, reflection, reconstruction, acceptance and hope are all listed. These are things that you have touched on in your rants. I try to be and do the things I used to do and then suffer so have obviously have not reached the acceptance stage and go through a lot of the other feelings. I also do not know whether to keep up appearances so I feel better when looking in the mirror only to be told how well I look or let myself go just to get people to realise just how bad I feel. This condition physically is bad enough without having to deal with all these other issues. So much more I could respond to in your rant and other replies as it is all so helpful. Thank you all on this site for the love, knowledge and inspiration you give.
Wow! You are so very welcome... my pleasure! Thank you for reading my Rants!!!!
Yes, as an End of Life Companion, I saw a lot of similarities between the end of life grieving process and what I was feeling after being diagnosed with GCA & PMR... I was grieving the loss of ME! I wasn't "dead" but I was gone and what was left in it's place, certainly wasn't ME anymore! It is definitely a LOSS and the grieving process does apply! I haven't reached "acceptance," either! I still have this false internal belief that the less Pred I'm taking, the better I must be getting! HA!
Hmmmm? ....looking in the mirror is always tough. My PMR & GCA hit when I was 63, so I was already struggling with getting older and with my looks deteriorating... becoming ill and not able to do anything, hit me hard!
You're right there are so many pitfalls that we must deal with physical, mental , emotional;/... it doesn't end. Thank you for your support and for liking my rants! : )
How wonderfully put. Good for you, talented wummin. I was due to go on a girlie night out last week. Firstly I had spent the day tearing up and crying for no apparent reason. Not feeling sad but unable to stop it. I wondered if I should go. I was being told by my other half just to go as it would make me feel better. I tried on clothes before going out...most too small for me because of this damned weight. After that I felt so exhausted by the mere exertion of trying on two outfits I didn't think I could make the night and considered going to bed. The pull of the quilt was very strong. But I put what fitted, feeling like shit and feeling I looked like it too I dragged my sorry ass out there to try to join in.
I felt like being on the outside looking in on a good night. Going from bubbly and witty to feeling like I have a learining difficulty and finging it hard to laugh made me feel like an alien. The others were screeching away and I felt I just could not join in. Like I was sedated. "I'm not me" I feel like screaming. I stayed the course and did enjoy night. I'm glad I went but I didn't half feel like a boring bast**d. In the end I did feel better but it was touch and go whether I did or not.
I'm going to show your blog to my family in the hope that they don't sneer and say "but you're not like that". I'm not like that cos I'm trying so hard to cover it up!!
Thanks for your words once again.
I was visiting my youngest daughter in Chicago last summer and had warned her about my walking limits as we were in her neighborhood using buses to get around. At one point we had walked too long and I told her I needed to rest for a bit. She turned to me and said don't be so needy. I lit up like a firecracker and right there in the middle of the sidewalk told her...I am sick..I do my best always.. And don't you ever talk to me like that again. Not to mention I had a four hour train ride alone just to get there. But I will say she really gets it now and is very tender when we are together so sometimes people do hear us.
Not what you're looking for?
You may also like...
Nice guidelines for GCA treatment
thought those of you who don’t mind reading scientific stuff might like to look at the NICE...
A nice summary on reducing Pred
https://www.cssassociation.org/patient-stories-reader/items/reducing-steroids-while-on-a-low-dose-ac
A guy walks into a bar…
Those that can't do... RANT!
https://rantingsofamadwomanblog.com/2018/10/09/a-guy-walks-into-a-bar/
Can't do anything nice with PMR
GCA NICE Recommendations UK Tocilizumab 
NICE approves Tocilizumab for Giant Cell Arteritis!
Do Quinine, Prednisone and Prilosec play nice?
