Turned my world upside down and shook it to its knees, that's how I feel about this horrible disease. Yes my symptoms are easing and manageable but I am so weak compared to how I was. I want to help in the house which I do but doing things like moving heavy stuff and climbing ladders to paint just aint happening. I feel useless but know I have to stay strong which most times I do but at times I am not the same person. Never had sadness like days like today ever. Sorry. I just wanted to rant. Fed up with this as all of you are.
I just wish this pmr would go away. : Turned my... - PMRGCAuk
I just wish this pmr would go away.
Written by
Markandevie
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DorsetLadyPMRGCAuk volunteer
I’m sorry you’re having such a bad day today- and I’m sure you want it to go away but unfortunately it doesn’t work like that…
I appreciate you feel useless and want to do what you used to, but you’re AREN'T useless, and one day you will get back to the old you.
In the meantime remember it’s not life threatening, although most certainly life changing [but only temporarily] and accept it is what it is.
Despite what many think - Acceptance is not giving in - it's actually taking control! So be positive about what you can do, not negative about what you can’t do …
Quote from John Wooden (1910-2010), NCAA basketball coach
‘Don’t let what you can’t do interfere with what you can do.’
.. and we re always open for good rant…take care
Thank you so much. So tough
We know it is…
I feel your frustration. I think you will recover, just treat yourself well. My family are loving being in control of Christmas and I am learning to bite my tongue.
I am assuming you are well south of The Weather!!!
Very hot here with a welcome breeze off the sea. Nothing extreme on the East coast (yet).
Er - Cairns is on the east coast, it's been pretty extreme! Even having to rescue crocodiles ,,,
Where my grandson started the Sh**box Rally in late October -good job it isn’t being held now!
It is very much to the north of where we are near Coffs Harbour. We have seen some large military planes flying over though
When I was in Coffs Harbour, the chef at the Quality Inn restaurant made the best gluten-free chocolate cake I have EVER tasted - ahead of most chocolate cakes ever actually!
The produce here is wonderful, fruit and veg in particular. It is easier to eat a healthy diet. We are in Sawtell very near Coffs.
Same as here - so many things are never really out of season! And so fresh.
I stay in touch with my ex’s cousin currently living in Cairns. The video clips and pics she has shared are disheartening. And crocodiles roaming neighbourhoods with newly created acces from the floodwaters. Bizarre!!
Yes... hold on. Things will feel better. Acceptance is key and then you'll be able to recognise that life will need a little 'tweaking for a while. Life has changed but not stopped.
Look for those 'little wins'.
Charlie Mackesy
Lovely picture and its meaning.
South of what weather?
SJ is in Oz at the moment. I've just seen news of the weather there!
Part of the problem for me at first was this is an invisible disease and it makes it harder for others to understand what's really happening to one. If you were laid up with a cast on your leg or your arm in a sling, everyone would know (including yourself!) that you have a serious condition which is going to limit what you can do. It won't heal within a certain time span like a broken limb, but you will get better, and meanwhile remember that although you do have a serious condition, it's probably (believe it or not) one of the better chronic conditions to be saddled with, There's medication which works, it isn't life-threatening, and over time nearly everyone goes into remission and even before that at least recovers to a very "normal like I was before" condition. Just allow yourself time.
In the meantime, while things are still pretty acute and you have not yet settled into a new regime, treat yourself kindly. This is not your fault. There was nothing you could have done differently to prevent it, but you can be kind to yourself right now. After all, our bodies work hard for us all our lives, and sometimes it's just too much and says "I need a rest!" 🍀
Thank you
Hi HeronNS your words are so true!! 5 1/2yrs for me but as an example last Christmas I had no energy to wrap the presents, our sons wonderful ma in law wrapped them for me. This year I've done them all myself!! That's what I call progress!! I feel I can see a light at the end of the tunnel. So Markandevie it will happen! Have a good routine good food lots rest & find little things to look forward to. Hope you have a relaxing Christmas 🎄 xx
Thank you for your encouraging message. I’m four and a half years in and the destination on the horizon is very blurred indeed!
Thanks reply Bachfugue, you're welcome. Certainly improvements are incredibly slow but they do happen! We have to be patient take things slowly. Keep yourself occupied make simple plans as you wake up to get you going. Always jobs pending! I even write menus for the wk so I know what I'm cooking for dinner. Happy Christmas & good luck for 2024.
Agree about the invisibility issue and having to explain it can be exhausting!
I came down with this in August this year and it has taken me a while to accept that things are not the same as they were before. I too, have felt useless and depressed. Very slowly, I have learned that I have to let some things go, which is difficult as I’m a bit of a control freak. Look for the easiest ways of doing things and use shortcuts wherever possible, or leave it out altogether. I try celebrate the things I do manage to achieve and not fret too much about everything else. When I spoke to on of our practice nurses about not having enough energy to do things, she advised me to not try and do too much and to try and take a little time out to do something enjoyable to cheer yourself up. Best wishes.
Good practical advice, Indigo2417! I'm also adopting your ways of dealing with feelings of uselessness and lack of energy. I no longer have "target" or "to do" lists, but have kept a daily "achievement" record for 4 years - v brief - together with a facial emoji recording my feelings & symptoms. Yesterday: clean work surfaces, send off supermarket online order, knit 😀. Day before: 😔much dozing, claudication bad, weepy & bad-tempered. Overdid things physically yesterday so today's will probably be "knitting"!
I start off in the morning with a loose objective, but it sometimes goes “off piste”. You have to play it by ear. Sometimes I get a job done and I just sit and have a mug of drink and watch the birds on the bird feeders. A few minutes break can help a lot. Also, I find I’m waking up at between 3 and 4 o’clock in the morning and starting to nod off at lunchtime, so a nap after lunch helps. Of course, it helps being retired, so the timetable can be adjusted accordingly.
Thank you. Appreciated
We know it’s not easy and I expect all in this forum can empathise with you. I’ve certainly been there but things do get better as you adjust. Learning to take things easy for someone who has always been busy is not easy but it’s important to listen to your body and realise this is not the fault of anything you’ve done. You’ll get the “well you don’t look ill” to which I have replied “well you don’t look stupid!”.
You will start to feel better and this is when you need to not overdo things and set yourself back. The mood change, due to pred as well as the PMR, does ease. Have the best Christmas you can🎅
I had to smile at the ‘you don’t look ill’. When I first got symptoms and was feeling really rough, someone remarked “ you look well”. I hadn’t got the energy to explain, but I wondered afterwards, if I look well now, I must have looked really cr*p before.
Like the response ha ha. You don't look stupid lol. Very good i shall use that one
There was a whole thread on such responses - "it isn't my face that's ill" might be more socially acceptable though sometimes who cares about being socially acceptable!!!
Nothing like getting it off your chest and having a wee rant. Better out than in and it is good to share, as they say. Hope today is better than you were feeling yesterday. That's what gets to me, is the unpredictability of this pesky illness. I never know how I am going to feel from one day to the next, so on bad days, I try to hold onto the thought that I may feel different tomorrow. Don't feel bad about taking the rest you need when you don't feel up to to anything else. It is all part of the recovery process and taking care of yourself.
Try this one too…. You don’t look ill ! Reply , my face isn’t ill!
I think PMR is particularly difficult for men, and men of your younger age. Loosing physical strength involves the stages of mourning which is what you are going through. The good news is this is temporary and You will be back to You!
So reduce level of exercise to what is comfortable but still maintaining strength and flexibililty, and as you taper you will be able to build on this.
Illness is often asking us to slow down and is a time to consider whether there was any stress or overload that contributed to our medical condition.
Please rant whenever you feel like it. X
Well said, thank you
Am I fortunate? I am by nature relatively sedentary and lazy so no unachievable tasks.
Funny lol
As Viveka has said, being struck with PMR as a 57 year old man who is used to being strong and capable, must be particularly difficult. You are mourning the loss of your old life while trying to adjust to your new one. Being able to do maintenance around the house, contribute, is an important part of your role and personhood.
How difficult it must be for those PMR patients who are used to being physically active, fit, strong, “healthy”. Accepting that adjustments must now be made and patience that must now be exercised as PMR runs its course, is a tall order. We live with daily uncertainty of how we will feel and also some measure of discomfort or fallout of the disease (side effects, changed relationships with others, a range of emotions). Sometimes we’ve lived with chronic pain for sometime before a diagnosis is made.
No wonder, especially in the beginning, we often feel fearful, frustrated and sad. In the early days of my PMR journey I told my husband that there would be times I would be retreating off by myself usually because I was feeling intense emotions and just didn’t feel like myself. As time went on, those times of retreat lessened as acceptance crept in.
Focusing on what I could control (what I ate, when/how I was active, when I rested, who I sought out for support, etc), helped me greatly. So did a few appointments with my existing therapist with whom I could be completely and utterly honest. Finding this group was also very key in my healing journey. To this day I find my connection with this forum invaluable.
Feel what you feel with authenticity and know that we are here for you…you are not alone!
hi there Markandevie! I know how you feel, but you will get better! It will go when it wants, not when humans ‘ beg, plead or promise. I started in April 21, it has been a long haul, even felt suicidal thoughts a couple of times, I have kept a strict diary, makes interesting reading to we sufferers but not others. I can see how I have improved. Now, wonderful news, Only taking 0.25mgs still with omprezole, just on Wednesdays and Sundays. Feel fine. Staying aware things could go pear shaped, But today is wonderful and Christmas for the first time in years , and I live alone, will be great. I am not the same person I was, I have learned so much about life, my life, and the world around me. Onwards and upwards!! Wishing everyone a pain free Christmas and the next Yyear.
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