Getting 'better' (maybe)

[Rimmy]

Greetings Everyone

It has recently dawned on me that I am feeling or maybe 'remembering' my 'old self'. Here I am again - reprising last year (which was the first since my diagnosis with PMR & GCA) and on a similar dose but this time round I am feeling 'more' of everything - just like my 'emotional skin' is thinner - but in a positive way ! I have sure been encouraging all this with some deliberate indulgence in musical nostalgia - you know playing stuff I haven't for years and making all those associations which evoke long lost 'loves' and revive some wonderful if teary experiences - dodgy at the best of times I know - but I wouldn't have dared to explore these parts of myself a year ago !! So - I was just thinking perhaps I am a 'wee bit better' when my OH chimed in - quite out of the blue and unprovoked - saying: 'you seem more like yourself and even 'look' more like your 'old' self .....

YAY !!! I am now back at 15 mg - still a moderate - high dose for those without GCA I know - but not so for me - this is where my face starts deflating although oddly (like last year) my appetite increases - not the vice-versa many seem to recount. BUT I am still happy with all this - I sense the tide may be turning - I have fewer episodes of fatigue and less need to rest and apart from some sweats occasionally am feeling pretty good. The myopathy I developed as a side effect of Pred is subsiding as well and the Achilles tendonitis I developed has all but disappeared with my calf muscles looking much more 'evenly matched' again and the terrible nocturnal calf cramps I complained about here quite GONE !!

I am TRYING not to count my chickens - except the new wee Pekin bantam chicks we are adding to our flock soon - and be patient as I know its not 'over' yet and at the end of this year it will only be 2 years - BUT I think I probably had PMR and even GCA quite a lot longer than this pre my diagnosis so I can't count exactly - as most of us can't very accurately I am thinking.

Regardless - Spring has sprung in the Southern parts of Western Australia and THAT is enough to fuel my enthusiasm and give me tons of 'hope' - which I also wish in bundles for ALL of you....

PS the 'old' kangaroo in this pic resided locally - I live on the edge of a National Park by the coast - and he would occasionally still hop up our side garden path on an old route of his or even down the street ... I haven't seen him for a while now and think he may (sadly) have deserted us for the beauty of the park.

Best wishes

Rimmy

[CT-5012]

Lovely photo and here’s hoping you continue to feel good. 🇦🇺 🙃

[Rimmy in reply to CT-5012]

Many thanks and I hope you feel 'better' yourself very soon !!🌼🌼🌼

[GrannyDi]

Pleased to hear you're feeling "better", long may it continue...Di

[Rimmy in reply to GrannyDi]

I wish it for you as well and sooner than later !! 🌼🌼🌼

[Hidden]

Wooo Hoooo!!!!! I am THRILLED to read this!!!! How wonderful! Yes, maybe listening to and sharing all of that nostalgic music has reconnected your neurons to "the old Rimmy;" the ones that PMR somehow disconnected! All the laughing, crying, remembering, feeling and walking down Memory Lane... has reestablished the electrical impulses to HER! And "shazam" the old Rimmy starts to emerge!

Ohhhhh, do enjoy the SPRING and the new Pekin bantam chicks, and I hope the 'old' kangaroo comes around to visit soon... if not, let's assume he is well!

Love and light! Meliss xxxxxx

[Rimmy]

Thanks so much Melissa - I see the need to do the listening as much a symptom of me improving as the other way round - I am sure that Pred does some strange even amorphous things to our emotions - but of course so do illnesses generally - as they change our own 'context' so dramatically that we end up just trying to 'survive' and this necessarily excludes so many other aspects which we feel define us as 'unique' human beings. I really just wanted to reassure everyone here that the haze can lift - and even if this is just temporary - 'remembering' and relating to my former 'self' has really given me some new momentum. But still I may be tempting fate even saying this ....

XXX

[PMRpro Ambassador]

In a year almost everyone will look back and see how far they have come...

[Rimmy in reply to PMRpro]

It can help to reflect on our 'progress' and I find having kept a diary relating to how i am feeling dose etc. enables me to have a 'clearer view' of what was going on when ... some of my own past comments have surprised me ! Also looking back on our 'old' posts here is an excellent way of doing this too.

[PMRpro Ambassador in reply to Rimmy]

I was reflecting on the fact that I tell loads of people who are panicking at the beginning that. They rarely believe it though

[Pipalina]

All sounds very positive, Rimmy, and a bit like a voyage of discovery...long may it continue x

[Rimmy in reply to Pipalina]

That is very kind of you Pipalina - I also wish you a 'meaningful' journey - we need to extract the 'best' we possibly can from all our experiences - although it obviously can be very challenging at times !

XX

[GOOD_GRIEF]

So glad you're feeling so much better. But remember...take it easy. Get those naps in. Do less for shorter periods. Then rest. If you feel great, go again. But stop again, too.

The last thing you want to do is work your way into a flare.

Enjoy the spring!

[Rimmy in reply to GOOD_GRIEF]

Quite right and thanks Good Grief - you sound like my OH who is always reminding me not to go overboard every time I have a bit of extra energy as I can set myself back all too easily - I know - been there done that more than a few times. Pacing is so important as PMRpro often reminds us all and I like here analogy of 'being' a battery which must be properly 'recharged' at reasonable intervals !

[PMRCanada]

So thrilled for you Rhimmy!! How wonderful to not only catch glimpses of yourself prior the onset of your symptoms, but also be able to reconnect emotionally through the music. I understand why you are somewhat hesitant, but do celebrate the emerging “true you”. She was there all along, just taking a back seat to all the adjustments that illness brought on. Validation from your other half who is witnessing what you are feeling. You are healing (and better able to manage your conditions with less medication). Congrats!

Since attending a wedding a few weeks ago I find myself quite stirred by songs that elicit feelings of love for my OH and my kids. Elton John’s “Your Song” brought me and my son to tears and I was compelled to purchase two tickets to his upcoming concert in Toronto. Feels so good to feel all of my emotions, not just fear and frustration re the PMR.

[Rimmy in reply to PMRCanada]

Thank you for your thoughtful response PMRCanada. Just being 'able' to feel intense emotional stuff is as I have said a sign that I am getting stronger and more like my 'old self' - and the music we love can really help this process - as can crying whenever you need to. Regardless of our general health I think 'permitting' ourselves a life which admits emotional intensity Is such a crucial thing - after all we want to 'feel' alive. To be able to cry with your son is such a LOVELY thing !!!

X

[PMRCanada in reply to Rimmy]

Agreed. Feel what you feel, no sense in trying to stuff the emotions away or pretend you don’t feel them.

Of note, my son is a very “passionate” person just like me (we seem to feel our emotions quite intensely). No guessing how we are feeling....what you see is what you get!

Once again, so happy you are feeling more like “you” these days, hope it continues.

[SheffieldJane]

That is such an inspiring post Rimmy! I am so glad that this is happening for you and that Spring has sprung in you too. When I have a good day, I also feel nostalgic, even right back to childhood. You describe it so well. It’s like being able to smell fresh air at last having been cooped up in an airless place for too long. Perhaps your “ roo” was a good omen, bouncing off to freedom. Yay! 🌼

[Rimmy in reply to SheffieldJane]

Many thanks SJ - I can tell you 'got' what I was trying - with some difficulty to express. It is like this illness and the drugs and the necessary defences -(physical/emotional/psychological etc) wrap us in layers which can feel claustrophobic (so well expressed by you as an 'airless space') and then everything is negotiated in a very 'muffled' way. To get to the point I am now at I feel like I have cracked some ice - or it has at least began to melt around me. Mind you I am having now to confront some of the deeper stuff we bury over time - but I figure I need to get on with it as - 'Time Waits for No One' - which also happens to be one of my favourite ever Rolling Stones' tracks - do have a listen on You Tube and I'm sure you'll enjoy it if you like me recall it from way back (or even if not) - I'm sure it rather unlikely they performed it at their concert you went to recently.

XX

[SheffieldJane in reply to Rimmy]

I just listened to Time Waits for No One and ended up getting kidnapped by the Internet, like you do. Amazing track!

There is learning in being grounded by these awful diseases, I think. Like many others, particularly women, I have spent a lot of time on the needs of others. I have been forced to be quite self centred and it’s not all bad.

[Rimmy in reply to SheffieldJane]

Pleased you enjoyed that track SJ which is really quite beautiful and highlights what a great singer Jagger was/is and the real elegance of Mick Taylor's guitar playing. I saw them in the early 70s in a huge concert in Auckland and it was unforgettable.

I also agree because we are beset with these illnesses we end up learning about engaging in things we might otherwise never have gotten around to - there is always some kind of silver lining. Also we are able to give ourselves (if we wish) 'permission' for some indulgences without the kind of 'guilt' we might usually feel if we are NOT doing everything we can to respond to other people's needs. There are worlds and endlessly fascinating worlds - if we look for them ...

XX

[SheffieldJane in reply to Rimmy]

I was in London during their free Hyde Park concert, with my dad, who wouldn’t let me anywhere near the park. You know, just after Brian’s death, when they released the butterflies.

“ You Can’t Alway Get What You Want”.

I agree with you about the endlessly fascinating worlds we can explore, when we are not trying to catch our tails.

[Rimmy in reply to SheffieldJane]

Goodness ! I can only imagine being there or even 'near there' - I have seen 'film' ... Oh dear I am not sure 'what' I am sounding like - but I am a lover of many genres and 'ages' of music

X

[Dream21]

Love your beautiful picture and so glad you are feeling so much better! What a hopeful message for all of us, too. I am so happy for you and hope your better health continues!

[Rimmy in reply to Dream21]

Thanks - a very 'distant' image of the kangaroo - but he looked so 'perfect' against this landscape I thought - and I do appreciate your empathic and generous wishes - I hope you feel lots better very soon as well !!

[Mikb]

So glad to hear you are feeling more like yourself! I too love to indulge in music of my youth. I usually do it when I am heading to the city for an appointment. Takes me an hour by public transit, so I stick my earbuds in, and indulge in Carole King or James Taylor etc and the time goes quickly. Hardest thing is not singing along while I'm on the train 😊

[Rimmy]

Hi Mikb - Thank you for your kind thoughts - and yes I almost always have my headphones in - though I try to keep the volume reasonable these days to protect my hearing - as need all I have left for the 'future' (ha ha !!) I love to listen to music indoors and out - especially when having to do lots of gardening and weed literally an acre at present. i also listen a lot to our ABC in OZ as our Radio National has some great programmes and podcasts - which keep me in touch with some of the more salient issues of our times - but music is my favourite 'retreat' and the real 'cream cake' of my listening - and I LOVE 'cream cakes' !!

X

[Daisychain12]

Wonderful news Rimmy. You have so much to look forward to xxx