Living with disability

From a discussion in my last blog about suicide to now about living!  Recently I have become acutely aware of the confines and constrains physical disability has on my life. Having worked for a number of years with children and young people who had severe physical and mental disabilities I had no real idea of their internal struggles of not being in control of their own lives.  Now I am experiencing all this first hand. The shear frustration at the lack of independence (being in control); privacy and dignity and how often have I had to accept family and friends showering and toileting me – this is all acutely embarrassing, maybe not for them but for me. 

I am now beginning to make good progress towards some level of physical recovery, indeed I am now able to use my stick to walk independently. I can now walk up and down our staircases (with Duncan’s support) all thanks to my physiotherapy.  I attend a super gym facility, a charity set up by an orthopaedic surgeon (Rachel) and a boxer (John or Mr Shouty as I call him!!) the gym is for those with a disability or needing some form of physical recovery. Called Able2be in Norwich.   At this gym I was introduced to Scott Rowbotham (physiotherapist) and a member of his team, Jill (personal trainer) both of them are fantastic – they understand not just my physical wellbeing but also my emotional and mental wellbeing, and how these impact on my physical recovery.  They also both acknowledge my experience and background, thinking of ways in which this can be used.  We have great fun together (believe it or not but I now even look forward to my gym sessions – who would have thought I would actually be saying this!).  One of the aims I have is to increase the movement and some function in my arm and hand so I am prepared to enter the upper limb restoration programme at the hospital for Neurology and Neurosurgery, Queens Square, London, led by Professor Nick Ward. [With thanks to Nigel Love for the introduction].  Whilst I cannot hold any great expectations, I feel I have some hope.  If I can get some form of restoration in my arm and hand it would make a massive difference.  The loss of function in a limb causes huge Limitations. It is a devastating consequence of a stroke. Thanks to Scott I am beginning to learn to walk without a stick (haven’t tried it at home yet!). It is a very wobbly start but I cannot express enough my happiness that this is happening. Suddenly what I thought was impossible and never going to happen again has now become a possibility. When this lockdown is truly over, and things get back to some sort of normality, I feel I will now be able to walk into the Auction sale rooms and look at the items I want to put bids on!

Joy of joys. I am now on my mower again (with a little lift up from Duncan!), another thing I never thought I would do again.

Don’t get me wrong I still get distressed, feeling incredibly sad about my loss but there is a ray of hope as I continue to make progress towards some form of recovery.

I am totally in debt to Duncan for his massive support, love, care and especially his patience with me!

Peter xx

13 thoughts on “Living with disability

  1. Thanks again Peter for baring your soul and sharing the raw reality of your rehabilitation. As you describe your journey it is clearly one of baby steps forward, but I love how your blog is punctuated with hope and possibilities. I imagine that developing and retaining your mental and emotional toughness is as important, if not more important, than the physical toughness, as the latter is so reliant on the former. Without question, you will be nurturing qualities of inner resilience which we are not even conscious of.
    Jan and I are so full of admiration for the way you (and of course Duncan) are dealing with, and overcoming, your painful circumstances. Please keep fighting and conquering. You are an inspiration to so many and we will be better people on the back of understanding something of the battle you are waging.
    All our love to you and Duncan
    Roger and Jan xx

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  2. Peter this is so encouraging! Your progress is amazing and I salute you both and the wonderful team behind your progress. Small steps. Literally. But so significant. Sending love and best wishes.

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  3. Peter, thank you some much for your kind words. You are an absolute marvel! So determined, honest, considerate and funny – well hilarious really!! You and Dunken brighten the gym the minute you walk in and you always have some interesting/dramatic/thought-provoking/random news to share with us! Our chats, whilst you stride out on your beloved treadmill, are a highlight of the week!! And having an agenda…..inspiring! You are a pleasure to work with and truly deserve all the amazing progress you are making. Long may your recovery continue!!
    Big virtually distanced hugs to you both,
    Scott and Jill xx

    PS. Don’t forget – HEADLIGHTS!!!

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    • Thank you so much Jill for your lovely comments Our visit to the gym twice(!!) a week our so encouraging and positive you are both really making a difference for me. I tell everyone about it. So bless you and thank you both so much xx

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  4. You are making great strides (scuse the pun) Peter! So good to hear you are enjoying the gym and seeing progress from all your efforts. So glad you have a good team working with you. Sounds like you do them as much good as they do for you! I agree, you and Duncan are a fun pair to be with and you never know where the conversation will vere. Looking forward to ur next conversation,
    Love Lizx

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  5. Hi, Peter
    One of the (very few) blessings of lockdown has been time to read, reflect and take life at a slower pace. I have not previously stopped to read your blog but this morning have worked my way through each posting and all the lovely replies. So good to hear of real physical progress as well as poring over your various emotional reflections – or, should I say, reflections on your emotions?
    As you will know from our occasional email conversations, I find I can be such a range of emotions from day to day and week to week. It makes me wonder if that is true for a lot of people, a lot of the time, but that we keep ourselves too busy and shut down to notice what we are feeling. You had a crash course in stopping work and being forced to spend each and every day with your emotions. To a lesser extent, lockdown has created that for many of us, especially those of us who live alone. I was struck by how often I read of your tears and frustrations, having just binge read the lot in one go! And I know how often we return to the same feelings and issues that we thought we had dealt with before. T S Eliot’s wonderful image of the spiral staircase in a number of his poems has been so meaningful to me, realising that although I have come back to the same viewpoint that I have seen before it isn’t quite the same. I am either digging deeper (descending the stairs) or actually able to see just a little further (ascending it). I am sure much of the time it feels as if progress has been slow and small but reading the sweep of your reflections it is clear that, no matter how many times you reach the same issue, you have actually climbed hundreds of stairs. God bless your continued climb! And happy new year, with new progress and new opportunities. James M

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