Thoughts

[LadyJayne68]

I am on my own for three days with time to think and reflect. I can't go out as it is snowing and I can't risk falling. I realise my attitude and approach needs work and it is my choice whether to accept this stage in my life and celebrate what I have, or continue to grieve for what I have lost. I am a natural pessimist due to my upbringing, but am realising I don't have to continue to be. Thanks to you all for your continued input. Jane x

[DorsetLady PMRGCAuk volunteer]

🌸..but just be a careful not to overthink everything..

[LadyJayne68 in reply to DorsetLady]

Thank you, I will.

[borednow in reply to DorsetLady]

I'm a Specialist at that.

[Freshairfiend]

hallo. It doesn’t haven’t he either or. You can give yourself space to grieve and appreciate what you have in life.

For myself, the grief is hard to bear, especially about childhood, but whenever it comes up, that can be seen as helpful. It also gives space inside for other emotions.

All the best

[LadyJayne68 in reply to Freshairfiend]

Thank you

[SnazzyD]

We just have to learn to BE. Adding in conditions, meaning, reasons, value, explanation, voices from the past etc etc, stops us looking outwards to the day. Life is full of gains and loss and it is made worse when we hold onto things as if they will never change in either direction. Grief is a process that is part of transitioning to our next phase. Anyway, that’s just my observation as a chronic over thinker who had to learn the hard way.

[LadyJayne68 in reply to SnazzyD]

Thank you for your wisdom. I know all this but I am a slow learner and I believe it is at the bottom of some of my difficulties. This forum help me stop ruminating too much. Voices of common sense 🙂

[SnazzyD in reply to LadyJayne68]

Of course you could just accept your brain finds it difficult to rest and not use it as another stick with which you can beat yourself. Be kind to that bit of you instead of using voices of must do better, correction and disapproval. For me those were voices borrowed from others as a child as you have suggested may be the case for you too. I had learned to hate that child so had to spend a lot of time be able to speak kindly and mentally give me a hug and the nurturing I needed.

[LadyJayne68 in reply to SnazzyD]

'Brain finds it difficult to rest'Such wisdom, that's it totally.

Thank you.

[Kendrew]

Hi LadyJayne68,

I'm 66yrs old and like many others on this forum my life changed beyond recognition 5½yrs ago when I was diagnosed with PMR.

Over the next 2yrs, I felt I lost so much as a consequence of this condition, and spent a lot of time grieving those losses too.

Things like my mobility, my strength & energy and the ability to engage in some of the pastimes I enjoyed. My general health & well-being and my career (I had to medically retire from the job I loved) I felt I'd lost my purpose in life, not to mention my confidence, self worth and a certain amount of dignity.

I felt so much negativity and knew I was on a downward spiral to a place that may be hard to come back from and would not serve me well, so I decided something had to change and that something was me!

I'd already joined this forum and as I learnt more about all aspects of my condition and discovered how others 'coped' I quickly realised that although there were many things I can no longer do, there are still so many things that I can do..... I can't go walking for a whole day anymore, but I can go out for a drive and do a shorter walk somewhere nice. I can't have an evening dinner with friends because of the fatigue, but I can still enjoy a nice lunch out with them.

It's really about making some lifestyle adjustments and 'tweaking' others.

As well as that, I've discovered many new interests that I probably wouldn't have explored had I not had PMR.

I now knit, garden (grew my own greenbeans for the first time and they were delicious. Such a gratifying feeling) volunteer, decorate stones and LOVE doing jigsaw puzzles to mention but a few. I also read a lot of books and have discovered the joys of nature, looking after the birds and hedgehogs in my garden.

I'm discovering how the simple things can bring me as much satisfaction and joy as anything else...... a sunrise over the meadow outside my house; a bumble bee on a flower I've grown, the smell of cut grass, the dawn chorus, seeing my son & daughter in law.

The joy is still there to be found. We just have to look a bit harder for it.

It's okay to have glum days... we all experience them, but I always say that life hasn't stopped, it's just metamorphosed into something a little different.

I don't know if this has helped at all but I truly hope you will feel better soon and be able to find the 'joy' that I'm sure is still there for you too.

[LadyJayne68 in reply to Kendrew]

Thank you for sharing, I am ok. I wasn't back in summer but I am now. The forum and members have helped so much. My diagnosis is still not set in stone but hopefully I will know more after my appointment on Friday.

[Preposterous in reply to Kendrew]

I just wanted to say how much I enjoyed reading your words of the pleasure you now take in these things and it actually brought tears to my eyes. A lot resonates with me too - home grown green beans, birds and hedgehogs and bees, and I’ve just started knitting a ‘proper’ project !!. My PMR hasn’t been debilitating and I feel pretty ok but I find this forum very helpful informative and above all kind. You too have added to this.

[Preposterous in reply to Kendrew]

the reply that I just posted was actually to you Kendrew!

[Kendrew in reply to Preposterous]

Thankyou so much for your kind words to me! They meant a lot.I've had so much help and support myself from this forum and it's heartwarming to know I'm able to give something back too sometimes.

Hahaha! I've yet to start my 'proper' knitting project, but I'm definitely ready to begin one now..... the practising is over!! 😄

Thankyou again.

[PMRpro Ambassador in reply to Preposterous]

It says it is - when you click Reply to post to someone other than the author of the thread it says who it is for in the box ...

[Stills in reply to Kendrew]

Great words

[Kendrew in reply to Stills]

🧡

[Tiggy70 in reply to Kendrew]

Hi Kendrew,

your words as always are comforting and inspiring. I’m just over 4 years into my PMR journey. For me the last 2 years have been harder than the first two. Taking Prednisolone daily has created more health issues for me including exacerbating my diabetes. I’m still struggling to accept ‘it is what it is’ and deal with the illness day by day. I still have unrealistic expectations of myself particularly with tapering the steroids and feel a bit of a failure still being on 10 mg after 4 years. It seems that just when I’m improving something else comes along to knock me off my perch. I’m currently dealing with the after effects of a bad bout of Covid 6 weeks ago and now have anxiety issues.

Like you I knit, paint, love gardening and enjoy the simple pleasures I get from these activities. One of the hardest things I find is other people’s attitude to my illness. So many times friends (and sometimes family) say to me ‘Oh not something else - you are so unlucky’, ‘what did you do to deserve this much bad luck!’ I know that I often accept invitations to do stuff that my better judgement says I shouldn’t be doing. I just don’t want to let people down but know ultimately I’m letting myself down. I do have some optimism for the future I just need to focus on that and push my negative thoughts away - easier said than done ! x

[Kendrew in reply to Tiggy70]

I completely relate to everything you've said, particularly other people's attitudes to the condition.

There's a constant lack of understanding & empathy, and a feeling of almost disbelief around the numerous health issues encountered.

I often say nothing as I feel I've already been labelled a hypochondriac by some people!

I just take one day at a time and deal with anything that occurs, when it occurs. It sometimes feels relentless though.

Thankfully, most things that emerge can usually be 'managed'.

You've had a bit of a rough time, but things will improve. Healing & recovery just take that little bit longer.

[PMRpro Ambassador in reply to Kendrew]

"There's a constant lack of understanding & empathy, and a feeling of almost disbelief around the numerous health issues encountered."

And that is just amongst HCPs!!!!!

[Kendrew in reply to PMRpro]

I had my first 6mthly review with a new rheumatologist yesterday. (Sadly, my previous one moved on to pastures new) This new one young and clearly wasn't as familiar with PMR as I'd have liked her to have been. She didn't even seem to know what questions she should be asking me! Without my questions, the conversation would have been over very quickly! Not very reassuring.

[PMRpro Ambassador in reply to Kendrew]

Wonderful educational opportunity ... Spread the word!!!!

[Kendrew in reply to PMRpro]

👍👍👍

[JASpmr]

Lady Jayne; thank you for your thoughtful and insightful comment. It so much summarizes where we all are.

[LadyJayne68 in reply to JASpmr]

I just want to celebrate what I have now. I have spent too much time on 'what ifs' and 'if onlys'

[PMRpro Ambassador in reply to LadyJayne68]

Probably the saddest words in the English language - "if only" ...

[LadyJayne68 in reply to PMRpro]

😔

[KASHMIRI1 in reply to PMRpro]

My meditation teacher thought that we should ban the word should.

[PMRpro Ambassador in reply to KASHMIRI1]

Very often yes - but occasionally, it has a place I think.

[Stills]

I always tell myself that no matter how hard or bad today has been tomorrow is a new day and will be a different day and that this hard day will be over tomorrow

[Spirograph]

‘It is what it is’, my Uncle Ben used to say and coming to terms, (still struggle with ‘it is’) with this long, slow, and still incomplete process for me and PMR. Fighting a flare, after slowly tapering down to 1mg, and so grateful for the wisdom and empathy on this forum. The ‘melancholy’ will pass. Here in Stonehaven, the snowdrops buds are visible through the layer of snow …

[Francesbarbara in reply to Spirograph]

Here in Beauly we are in the season of watching the geese flying overhead on their way to their feeding grounds. The sunlight on their wings as they fly in their V shape , makes you stop stare and wonder. You come back into the house with that lovely 'uplifted' feeling and a big smile. As Kendrew says - it is the little things that help us.

[LadyJayne68 in reply to Francesbarbara]

Yes I agree. It is the multitude of different garden birds that visit our feeders that give me joy. I see them close up from my kitchen window

[Spirograph in reply to Francesbarbara]

Was up at friends in Kildary couple of weeks ago and on the Sunday afternoon we went to Cromarty Cinema. On the way back the skeins of geese were magnificent coming into the Cromarty Firth. 🙂

[Zebedee44]

I hope that you will reach a point of acceptance of your changed state whether it is confirmed as PMR or something else on Friday. Once you have a plan for the future you will be able to work with your condition and the pesky drug that gives you back your quality of life. The pain in your body and the foggy brain won’t go away but the anxiety will be reduced, your thinking will be clearer, and you will be able to focus on the life you now have and the future you can achieve. And your husband will be there at your side to hear what the consultant he already respects has to say and how to deal with it.

We will all be thinking of you on Friday Jane, we have got your back, girl xx

[LadyJayne68 in reply to Zebedee44]

How kind, I don't know what to say 🥹

[Pixix]

I think that’s what I was trying to say yesterday! You lead a happier life with a cup that’s half full, rather than half empty! I get very depressed each time I get a new diagnosis (I have 12 now), but then you have to pick up, ignore it to a degree & carry on…we are only here once, & each day is important! But if that’s not possible, see a Dr for help, maybe? I feel I’ve become a complete burden to my husband, & our fights & struggles during my tapering have nearly ended a 44 very happy marriage…having 12 conditions it’s impossible to be happy every day…but I try, for his sake…I have been ruining his life on occasions lately, & he doesn’t deserve that!

[LadyJayne68 in reply to Pixix]

My heart goes out to you. My husband started running during the pandemic and he has kept it up. He recently completed a half marathon in 2 hrs 17 mins at the age of 67. He is also a keen gardener. These things are for him, get him out and about and keep him fit mentally as well as physically. He is on a 48 hour visit to family just now. By doing these things for himself he can give me what I need in the way of help and support.

[Pixix in reply to LadyJayne68]

Yes, but you need to remember he’s suffering, too, & that it affects him, too! Sometimes it’s harder being the carer than the sufferer…time to care for each other!!

[Crusty1949]

lady Jane, one step at a time, first appreciate, all the good that god has given you and then look at the beauty in the snow. Remember nothing is more pure then a new driven snow. We are all here for you in our heart and prayers. Rusty

[Tiggy70]

Hi LadyJayne,

I can so relate to how you are feeling as I too am a naturally pessimistic person. I wasn’t always like this but our life experiences can change us. We know what we should be doing to try and improve our outlook but it’s not easy. I hope you can find a way forward. This forum has and continues to be a lifesaver for me 🌸

[GOOD_GRIEF]

I take 15 minutes during my morning shower to feel sorry for myself. After that, I just get on with it.

Are there days when that doesn’t work? You betcha. That’s when I pull out the loose leaf notebook where I’ve listed things I always wanted to see or do, places I always wanted to go, or things I just heard about that sound interesting. Unless there’s a really good reason not to, I do the next thing on the list.

The list is divided by an estimate of how much time is needed, how much money, whether a companion is desired or needed, weather conditions, and equipment.

There are a couple more loose leaf notebooks where I keep the pictures, notes, names and addresses of folks I met, grades on the experience from “again please” to “once was enough” to “not on your life”

It’s sometimes educational, sometimes loads of fun, and beats the heck out of feeling sorry for myself .

[Kritterkid]

I like to think of it this way: one of my super powers has been to heal well. After my last injury, it dawned on me that making better decisions so I didn't get hurt in the first place was a better super power!

Peace