There is lots of info around the subject of chronic forms of fatigue which unfortunately accompany many illnesses - especially AI ones like PMR/GCA - as you all know. You may also have seen some of the 'advice' we are all often offered about being clear with family and friends about how we feel when we are very 'fatigued' so that they hopefully 'understand' we are not just being deliberately unsociable or unfriendly !!
BUT - BIG 'BUT' here - do you notice when you try this 'direct' approach and say something like 'I just can't make it tonight' or 'I feel exhausted' or 'I am unable to do so' - and so they are often obliviously STILL 'put out' ....
Well I won't go on and on -it's like telling people you have an AI disease and may 'look' 'OK' a lot of the time but actually frequently feel quite unwell - and that it won't go away in a hurry - it may take years !! - BUT and another 'BIG BUT' - they seem to 'forget' this very fast although aren't WE meant to be the ones with some cognitive issues aka 'brain fog'...
Well I for one am OVER IT !! -- I'm saying those words a lot lately - and won't put up with the negative or smarmy responses any more cos thing is I often do feel lousy and although I don't want 'sympathy' it is not (as you all know) much 'fun'. I do wonder however how many times we are meant to say the same thing before it finally SINKS IN ....
Rimmy
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Rimmy
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I went to see my GP last week and as I walked through the door she said 'you're looking very well' - then grinned quite wickedly. And gave me 20 minutes of her time. It may have helped that I gave her a very positive review on the annual feedback form: 'she listens, is empathetic, I feel positive after a visit'.
Maybe a Friends and Relatives Feedback Form would concentrate their minds
Yeah! You have reached that level on the Chronic Condition sliding scale when you give up caring about others reaction and just politely tell the truth and look after yourself.
I've said in replies before , especially to Newbies , being honest and up front is something that we just have to do , with ourselves and others , about what we can cope with . And sometimes we have to cancel things at the last minute , or, say ' Sorry , No!' to certain jobs we always used to do for others ( including our Family!) but really cannot take on during our recovery.
One thing PMR , GCA or any Chronic Condition teaches us is whom are Friends are.
The good ones , handle it , understand , and even offer to give you a bit of help or support to do a little more so you can still get to enjoy yourself.
The others , stop calling , get frustrated and tut , but to be honest , even as a healthy person do we really need to be surrounded by people whom expose the fact that their relationship with you is All Take and No Give ?
The answers a resounding No !
The silver lining ?
By the time the PMR journey ends you have brought more balance and serenity into your existence and Daily Life and your Healthier body can reap the rewards of the new Stress Free regime.
You've stopped flogging yourself to Death doing stuff for, or with, others that really don't appreciate you as you deserve .
You stop doing things because you think you should , or always have , not because you want to or enjoy it.
You've made closer friendships with people whom you didn't spend much time with before because they stood up and showed how much they cared.
You have learnt that it is fine to happily show the more Selfish People the Truth , or the door , no matter how close you thought you were before.
In the end , thats an unexpected gift from a usually Selfish , Time Consuming Unwanted Friend known as PMR/ GCA.
And twice as important to try to do , they can be the hardest to knock into shape , but when they eventually " get it" the most useful Lifeline to have about , fending off phone calls , visitors , snotty nosed infants and ( sometimes reluctantly) , arranging appointments , giving lifts , reducing our workload and taking on the jobs we really can't or shouldn't do.
“Fending off ......snotty-nosed infants...”. Ha ha, thanks B.
I’m still working on it with my son who I live with as he has Crohn’s disease and works part time, it’s a balancing act to not be the mom who manages everything. We depend on his income along with my very low social security income. He’s gradually getting the picture.
Yes , as he has Chronic issues too , working out a balancing act and adaptions that help both of you together and don't put too much burden on either of you will take time , but I bet it will be rewarding and bring rewards in the end. xx
Sometimes we are our own worst enemy. Last night, I had been invited to an ex-workmates surprise retirement do, arranged by her daughters. I was looking forward to catching up with a few familiar faces and even though, (sod's law) yesterday wasn't a very good day,I went along anyway. You know what's coming don't you. Yes I ended up wishing I hadn't. No dancing for me and getting bumped and banged into didn't help either. Also the door to the Ladies weighed a ton and I could hardly push it open. It was nice to catch up but oh,I really should have listened to my achey body and stayed home😕🙄
We all do it , funny how we think it will be different then never is.
The subconscious thoughts that we are probably about to do something we aren't really up to , or ' Event Dread' add up to the bad day before we even go.
Before I got worse with my other issues , I got into the habit if saying to friends that I would try my best to go to things but if I didn't get there not to take offence or worry , it's just I was having one of those days when I want to be there but my body doesn't.
I also apologized early on in their plans for not being able to take part in any party preparations like I used to but that I have to make a choice between going to the party and helping to create it .
It was a revelation ( especially around Christmas ) it meant I could turn up when I wanted even if it was only half an hour and everyone ( except the total meanies ) were just happy to see I'd made it , didn't try to drag me off to do things but we're really happy if I felt like having a little go , and if all was too busy or too much nobody thought it odd if I had to go and sit in a quiet spot , take a nap!! or leave not long after I arrived. It meant a bit of Fun that I could cope with , or no guilt from the ones who really cared about me if I couldn't.
I don’t know what the answer is, we don’t want to become isolated, but this condition is so unpredictable. It’s like craving the very thing you can’t have.
I can totally relate to this Rimmy. My daughters in particular avoid mentioning it, in case it sets me off, with a litany of symptoms. They make me feel weird and difficult rather than genuinely unwell. Things like “ I know you like your own space” but. I have delegated next year’s get together arrangements to my OH who gets it and they behave with him - these are mature women!
Thank goodness it is a quiet Christmas with just my OH and son this year.
What a wonderful apt rant Rimmy! Good to hear from you.
To be honest I long ago gave up on what others think and don't worry about it. However my friend, who doesn't suffer with PMR, ranted when her PIP assessment read she presented in her face to face assessment as looking well when in fact she is in a great deal of pain! And these Assessors are supposed to be qualified in medicine????
I guess what I am trying to say is if so called professionals have this attitude is it a wonder that lay people are similarly inclined?
Perhaps we need a stamp on our foreheads saying don't be fooled I am ill with a glum emoji? Alternatively we could just stamp 'sod off!' On our forehead and be done with it.
Perfect ! But could I have a stamp on the bottom of my foot instead like a doll , or a Triad tattoo , the sign on my head might be a bit embarrassing , and I can look like a hay brained state as it is!😋😂😂😂
Don`t bother trying to explain it`s a waste of time and the precious little energy we have. Spoke to someone yesterday and told them about fatigue, he said yes I get tired!...no I said deathly fatigue is very different, like walking through treacle, reply, oh is it that bad?....grrrrr
BRAVO, BRAVO!!!!!!! As I have said over andx over again... "None so queer as folk." You have to do what's right for YOU! True friends will always understand. xxx
I had a painful revelation about how others might see me soon after I first fell ill. I was trying to explain to (let's say) Person B about pacing myself and why I couldn't yet commit to some activity or other. I started ''I have to think...'', and was going to say ''whether I'm likely to have enough energy'' or words to that effect, but Person C butted in and said ''Yeah, negatively!'' in a very snide and dismissive way. I know Person C was immediately sorry but our relationship has never been quite so free and easy since.
That reminds me of when give me a lecture on steroids and how awful they are blah blah blah... I now have 2 stock replies which I have actually managed to remember🤣
1. The steroids are necessary as they inhibit pro inflammatory signaling pathways!
2. I take the necessary measures to minimise the side effects!
I tried these out the other day and was impressed with the results 🤣!
I’ve got a few more I’m happy to share ! I thought I would try out the following at my rheumy appointment on Dec 17, if he or she gets cross I haven’t reduced fast enough ...
Glucocorticoids decrease leukocyte transmigration across the endothelium thus limiting inflammation! (This is my favourite 🤣)
Or more simply..
I’m taking them to control an overactive immune system!
A friend of mine likes to phone and talk 'at' me for an hour or more at a time. I know she is lonely, so most of the time I listen, or my OH will answer and make an excuse. Yesterday she called and I explained I felt really unwell. I had overdone things and had a mega headache.'OK I understand' she says, we hung up phones and then she begins a text message Inquisition !
🤣🤣🤣 I was going to suggest a hope you OK. Bed early for me text... But that obviously wouldn't work. I voicemail everything then who it is. The ones that used to do that to me were tipsy so I dropped my landline by unplugging phone but they can leave a message whi I check. Every 4 months.
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