Farewell to Me and Hello to Myself – Changes with Chronic Illness

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Life

I’ve been struggling to write, to take part in blog shares or blog parties. I don’t know why….brain fog, the constant nagging pain in a near permanent dislocated shoulder, stress from an adolescent, lack of pacing, all manner of things could be blamed….I just don’t really know.

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Farewell to Me

Hubby was clearing out earlier this week and came across some DVDs that he and my brother compiled years ago from my parent’s camcorder.  You must remember the black boxes carried by all self respecting tourists about 15 years ago?  Unlike the traditional camera with a film to be exposed and turned into photographs, the stream of moving images needed to be converted from a small cassette into a format suitable to be viewed on a home system – usually a DVD player by this time!  We had forgotten we even had them but, when the writing refused to flow, I have spent several afternoons watching short clips from 12 – 20 years ago.

 

A wonderful trip down memory lane from the eldest being an inquisitive toddler – did you really let him use let hammer and hit himself, Dad/Grandad?  – to holidays abroad with all three kids, to Christmases where departed family are still very much alive and laughing alongside the rest of us.  For me it was my young children that I was watching closely and shed a few tears when my lovely Grandad appeared with the then 4 year old politics student discussing a Ninja turtle gift for Christmas 2003.

But hubby told me today that he struggled to view the clips as he was watching me!  Why?! I wondered –  what was so interesting about me being mum….pregnant, with new babe and toddler, unwrapping presents, pushing a buggy, going to work. Hmmmm – that was it!  He saw me – how I was, always on the go, winging it most of the time, particularly around my back problems, pain and EDS.  Walking, running, playing, dancing, swimming, working.

Claire & Lucy

A particularly poignant moment was hearing our lovely girl’s voice, aged 2, telling Mummy and Daddy to cuddle as she zoomed the camcorder in on us – with a little help from her brother.  On hugging a little voice shouted out “Kiss!!” – we were on holiday in France and this was our last holiday abroad as a family as chronic pain was soon to strike.

Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.

Whilst I had not really seen myself, much less watched myself (who likes watching and hearing themselves?), hubby saw the person I was and remembered the person I became.  The woman turning 40, riddled with pain and opiates, puffed up with drug weight gain and lunging into reactive depression.  The woman struggling to be a wife and mother.  Sometimes it is easy to forget that this journey with chronic illness is not ours alone.  Our nearest and dearest live it with us, the good with the bad, the happy with the sad.

Moonwalk 1.jpeg
The Moonwalk

When I mentioned her dad’s comments to the lovely girl, I did feel sad that her answer was that yes, she noticed it too as she can’t remember me before my symptoms took over and my general health deteriorated.  The mum on the film looks like me, sounds like me but is almost a stranger.  Or is she?

Hubby had the final say by reminding us all that it is possible to move beyond those awful middle years.  He says that I am me again!  It sounds a bit dramatic doesn’t it?! Accepting my situation, being pushed to come off the regular opiates in order to have a spinal cord stimulator and keeping as healthy as possible(!) has been transforming.

Whilst I will never be that thirty something who seemed to lose so much almost overnight as she turned 40, now as I look toward turning 50, I think that I can say that I am ME again.  I look in the mirror and as I look past the grey hair, the lack of sleep, the metal spine, the splints and mobility aids, I feel like myself and so I see MY reflection once more.

closeup photo of primate
Photo by Andre Mouton on Pexels.com

 

 

 

 

31 thoughts on “Farewell to Me and Hello to Myself – Changes with Chronic Illness”

  1. Hugs! I don’t know what to say but I do feel awed with your strength to deal with this chronic pain. I’m sure a family that supports is a blessing. Those tapes must have been lovely memories and good that you had those moments to relive now.

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  2. Oh the recent past is the most difficult. After my father died I watched a video clip with him holding his granddaughter saying something to her and her corpsing. It killed me then. Now 20 years from the film and 15 from his death, it’s a happy memory. Is that perspective or just wrapping some memories in later ones to neutralise them? Yours is a continuum, a spectrum of living, while mine is, was a new beginning so the analogy may not be apt but thank you for making me think about it and here’s to the next bit of life’s constant bannister to slide down.

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    1. The analogy is apt in so many ways – when I was a palliative care nurse I always tried to assure grieving families that what hurts so much in the now will ease and be replaced by a smile in the future. You are right – life is a continuum, but it is full of new beginnings and I absolutely love the idea of sliding down life’s bannister (rather than struggling up it) – might have to steal that one for a poem!! Thank you so much for taking the time to read and write such a lovely comment x

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  3. What a beautiful blog post and one I relate to so much. I look at the ‘memories’ on my Facebook and see personal bests whilst running, the day I got to my ‘target weight’, dancing at my wedding etc. and it feels like I’ll never be me again… but 12 weeks on from my SCS I’m beginning to feel it again. Days out at Wembley with 6 hour car journeys, Miles and miles pottering around Italian cities. I don’t think I’ll be running again tho!

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    1. You will feel like a different, but equally important and valuable you Jen! My scs has given me a new lease of life, even though many others symptoms from my Ehlers Danlos have worsened. The funny thing is that hubby is now at home to help care for me – and whilst we don’t have much money coming in now, life is less stressful and we spend time together as a family. He works as a part time sports coach at the kids’ old primary school – somewhere he spent very little time when they were young due to his work commitments – and loves it. Despite my now being classed disabled in so many ways life is better. Hope your recovery continues well and just shout if you need any tips! C x

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  4. This post is so poignant and yet so inspiring, it shows that we might have times where we struggle to find ourselves when chronic illness strikes. But sometimes when looking back we can realise that we are still here and we do find ourselves again. This must be such a a reinforcing moment and you must feel so proud of the work you have done to find yourself again, thank you for sharing.

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  5. The Dalai Lama tells us to live in the present and not to look back or forwards. It’s hard to do, but as a 60 year old who has many scars and discomfort from a battle with cancer that I won, I think it’s wise advice.

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  6. Unbound Roots

    Claire, thanks so much for sharing this touching story of yours. It’s hard to reflect on how life has changed in negative ways. Especially when you mourn loved ones, or a happier time in life, or in your case a time when pain didn’t affect your life like it does now. I’ve always enjoyed reading your posts, and I have to say that you effect people in very positive ways. I hope you see that!

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  8. Claire, this sounds exactly like my life at the moment. I started blogging after a spinal fracture but lately have lost the flow, lost the will and am losing the ‘acceptance’ battle. Thanks for showing how difficult it is on this journey, especially when you’re still mourning the ‘old’ you. Xx

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    1. It is so hard to keep pushing forward all the time – and even harder to explain to the healthy how it feels on a down day. This is why I so appreciate the community of people like you who I have met and befriended through our blog sharing. Some days it can feel as if everyone else is busy writing wonderful posts and I can hardly get out of my PJs, but then a word from someone like you makes me realise I am not alone….and neither are you. sending love x

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  10. I love how raw and genuine this is. I can relate so much. Every time I look at pictures before I got ill I feel a bit teary and nostalgic to the good times. But I’m trying to remind myself of all the cool people I met through my illness and how much I’ve grown as a person.

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  11. Claire, I’m glad you’re you again too. You are an inspiration, and I love that you use your experiences to inform and help others.
    Your words will strike chords with others in similar situations and give hope to them xxx

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  13. I sometimes think the process of acceptance is one that we have to do over and over. It isn’t just ‘accept and move on’. It’s also, as you’ve pointed out, a process for our nearest and dearest to go through too.

    I remember years ago, had to change meds, and pain was worse, but part of me came back. Ian and I were in the car, singing along to a CD, and Ian looked at me and said, “I’ve got the old Liz back.” I hadn’t realised I had gone until he said that. The effect that meds, not just pain, can have is pretty powerful.

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