A Lifechanging Disease: Forgive this extravagance... - PMRGCAuk

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A Lifechanging Disease

cycli profile image
14 Replies

Forgive this extravagance but I want to share the response I made to a friend who cycles in the club I established in Hertfordshire CCA, asked me to read and comment on his latest book. Jim Rees is an ultra athlete who has raced across America 3000miles by bicycle in under 12 days on three occasions solo and his book A Vicious Cycle, Amazon pub. tells this story and reveals in raw detail his upbringing and motivation. It was a challenging and moving read and I had to be as honest and understanding with my response. His mindset may interest many who may relate to him in some way and I tried to relate through my experience where it may lead him and be careful.

Hi Jim. Well I’ve read your story and like the person you have become so far. He’s by no means the finished product but he’s well on his way to becoming something special. He’s also in danger of overreaching the other way. No matter how genuine and keen you are to help everyone discover their inner greatness some will never respond. That won’t be a failure on your part or even theirs. I’ve learnt that pushing water uphill can be done with skill, effort, persistence and intelligence, but in the end water finds its own level and the life you expend towards that goal is ultimately wasted. It all ends back at the start. I’ve done it for a large part of my life because I believe anything is possible if you set your mind to achieve it. It is just that maybe it wasn’t a goal worth achieving in the end and the effort could have been better deployed. Nudging them in a better way is laudable and even if they only open the door slightly to let the new light shine in you will be able to help that light shine brighter, but they must at least allow the door to be opened just a little by themselves. Until then they are not ready and will resist. However loving, willing and open you are to help someone blossom remember the rice seedlings and the chrysalis where someone tried to help without letting them resolve their necessary struggle. We have all been bits of the person you were at one time or another and some of us may still be at times. That’s the lesson we all need to learn and be reminded of constantly. We are all a work in progress throughout our lives and this book is your lasting reminder to help others towards this. It is brave and honest and will help some open that door. For that they will thank you.

Now I have found a new challenge with this disease of PMR and GCA I’ve told you about. It requires a total shift in mindset because it defies everything you and I have ever engaged with. It is not something that can be overcome and that has taught me a lesson that only by embracing and accepting it can I acknowledge its characteristics and ultimately adapt to operate within the boundaries it has set me. I cannot change this as it is how the disease works. It has totally taken what I planned for the next 10-20 years, should I live that long, and rewritten the future. My immune system, the general, my adrenal glands which turn out to be far more powerful than the amygdala you relate to in the brain, and it controls every function chemically including how one thinks. It is almost impossible to understand or even contemplate unless one has experienced the change and I wouldn’t recommend going there ever. However on the up side it has opened a whole new perspective for me and as with every challenge we face there are positives to be had. Once I have the inflammation suppressed and the drug dose reduced to a tolerable level I can start to rebuild my body. However, damage will have been done as it is happening now for me to watch helpless to stop at present and some abilities won’t return.

I don’t know the end story just as you don’t know who and what the new Jim will ultimately become but you have your hopes and aspiration of that person. The path you are on is well set out and your steps are firm. Nothing is certain in this life and as you well know everything can change in an instant. I truly believe that we all have a purpose but some never find it. That purpose is to contribute something new or more each day we live. That’s all really, because unless we make a difference each day what purpose does our life serve. Now for some that may be destructive or negative as we see it but to them it may appear the opposite. Without an understanding of their motives it is impossible to say and falls back to your belief in not judging others. One has to walk in their shoes to understand and I have learnt that however hard and empathetic one tries to be that it simply is not possible to do it.

Be gentle on yourself and forgive the person who screwed up. He’s still lurking there and will hold the new Jim back. He’s a very strong backbone of the new Jim who has grown out of him. Without that strength you wouldn’t have emerged from the chrysalis. We can’t all be saved, some don’t want it and are happy with the way they are even if they could be better. Shine the light and hope they see it Jim.

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cycli profile image
cycli
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14 Replies
SnazzyD profile image
SnazzyD

Bravo. When this condition happens, to quote a well known space traveller, “It’s life Jim, but not as we know it”. It doesn’t do to have set goals or roles onto which one pins all self-esteem and value, especially with a success or fail label waiting. It’s all a process.

Nextoneplease profile image
Nextoneplease in reply toSnazzyD

How very, very true!!

in reply toSnazzyD

I often wish BONES would lend me his sonic screwdriver thing - but I think that’s a different Doctor 😉

cycli profile image
cycli in reply to

don't we all wish for advanced tech. to solve our illness. My father patiently did what the docs told him for 34 years while deteriorating until he died. He never doubted that they would eventually come up with a cure. He never complained. I wish that I had his faith but I prefer to try and understand everything I can and work with the possible here and now.

Rather moving.

Artandpoetry profile image
Artandpoetry

Wow Cycli. Such wise words, once again expressed so sincerely. What a journey we are all on. Thank you for your input.

SheffieldJane profile image
SheffieldJane

Brilliant! I needed that today.

GOOD_GRIEF profile image
GOOD_GRIEF

The nature of things is that they change. Our strength lies in our ability to adapt to change.

It's that simple.

Kendrew profile image
Kendrew

Wonderful cycli. I spent so much time fighting this wretched disease and to no avail of course, but as soon as I accepted all it was throwing at me I opened up time and space to focus on learning how to manage it. I've had to make some major adjustments to my life....like retiring earlier than I'd anticipated....but I know so much more about PMR and my meds now and this has definitely improved both my health & well-being as well as the quality of the life I can lead. Things are far from perfect but life is most certainly not all gloom & doom and I finally feel confident enough to take responsibility for how I want my future to look and I therefore have something to aim for, and most importantly...a purpose. Thankyou for sharing that inspiring post.

cycli profile image
cycli

Thank you this family I seem to have joined. Disparate souls joined at the hip in sharing our hopes and downtimes. I had a 30 min. session FtF with my GP today and was told my state was affected by the pred and my mental state.She wasn't impressed with the attitude nor attention given by the rheumatologist I saw. She is fully on board and supportive and knowledgeable on PMR and GCA warning me of a slow taper. Wife confirmed her assessment of my mental state on my return. The fluid retention in legs and increased BP are not helpful but we all know that. Going on meds to reduce so yet another one to assess. I'm a little wordy at times but I'm worried about my friend who has a classic profile to get this disease because his lifestyle and approach scream at me beware. I had a reply from Jim who is a life coach specializing in inspiring others to achieve their inner greatness. He was abused as a child and has risen above to help and inspire others.

Wow Geoff,

You need to write a book for sure, a beautifully written note.

I’m glad you’ve accepted this disease that has blindsided you, it’s the only way to face it. Probably your only way to face it but it will help for sure.

Your sharing makes me think of Rob Burrows the Leeds rugby player who has faced his illness the same way you are leaning into your own. Very brave and rare. I’m pleased I’ve got everything out in the book, well, not everything there’s a whole other book about the first marriage but out of respect to my kids I won’t write it!

I’ve also learnt to be more gentle with myself.

I’m sending my heartfelt love and a big hug buddy xx

Judyliz profile image
Judyliz in reply tocycli

What a wonderful pair you are and such an admirable and close friendship. I don't normally save posts - we have Mrs N's great Faq's - but this I shall.

cycli profile image
cycli

good things often grow out of adversity Judyliz.

Knit11 profile image
Knit11

Thanks for sharing! You expressed what we face in simple coherent term. I read some of the paragraphs a few times. Very helpful!

cycli profile image
cycli

If it helped I'm happy for you Knit11. Pearl or plain?

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