Philip
Forum Replies Created
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Leah, thanks for posting this. Very apposite for me.
I had a bit of drama at the end of last year with acute intestinal problems, and was taken by ambulance to hospital, where ‘I saw’ in the New Year. Not to be recommended, in the middle of the pandemic!
I experienced the worst and best of the NHS. The worst was rather terrifying and distressing. The best, during my last 24 hours, was outstanding. I was very glad to get home and mercifully, not in pain.
I have had different advice about what medication I should take and when to take it, from the doctor at the hospital, my neurologist (who got in touch for the first time since November 2019), senior nurse at hospice, and my GP.
It looks like I’m going to have to experiment. I can’t afford to get it wrong, as I was in serious difficulties when I was completely blocked, and in dreadful pain.
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I am constantly told I’m an inspiration, to which my response is always the same, I don’t feel particularly inspirational. When I reflect on the sentiment behind what is being said, I feel they’re trying to be encouraging and, in some cases, they recognise in themselves a vulnerability that makes them doubt they would be able to cope with were they in the same situation as my me.
The most dramatic thing that I have had said to me, from someone very close to me, was ‘I think you’re amazing, I would have ended my life within a year as I know that I would not be able to cope’. How would you respond to that?!
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Though I can’t use my legs and have limited use of my hands and arms, I don’t like to be described as bound to my wheelchair. If someone asks what is the correct way of describing me (not an invalid please!), I am Philip, I have some physical impairment and use a powered wheelchair to get about.
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Thanks Leah. Isn’t it amazing how somehow we work out how to manage in challenging circumstances?! For me that determination is driven by willpower to keep living as fully as possible. It is harder for you with both your mum and you needing help when ideally you would be helping each other. Best wishes Leah
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Leah thanks for sharing your experience. I’m sorry to hear your mom has MD now. Bless your dad for stepping in and adapting to help you. All best wishes Leah to you and your loved ones for the Christmas holidays and 2020
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Hi Dani
I now accept that I can’t manage without help and in January will have a f/t PA/carer (I hope). So will then have my first experience of being helped with showering – and toileting, getting dressed etc.
I’m not looking forward to another ‘step’ in the journey of lost Independence. I will have to pay for the care which is a worry as it will burn up our savings and I’m concerned that my wife will be left with little for her needs in the future.
I’m sure I will adapt to being showered but it will feel weird to begin with. The positive is that all the personal care should consume less of my energy which I can then harness for more interesting pursuits