I have been battling to maintain myself functionally over the last couple of months as I sense this disease is taking a hold over me now. A cognitive 'blurring of thoughts' and subtle mobility/associated difficulties are now creeping in. I have given up on the swimming & cycling as it is too hard for me to summon the energy to carry out much more than a short walk from the living room to the bathroom or bedroom; always accompanied now by a pair of crutches, walking without being almost impossible. The wheelchair stored neatly with dust and cobwebs in the shed is becoming more of a reality.
I have considered/refected upon my life so much over the last couple of months that I am exausted by it - but with little else to occupy my mind and spirit -the subject of my demise is very prominant with me, always. My initial thoughts about 'dignity in dying' and how much suffering is acceptable has led me down a path with Dignitas - where I have joined the organisation as a member and hope to make some initial visit soon, this seems like a good alternative ,to me.
I am not prepared to hang on for the sake of it.....
My social circles are ever decreasing as I find it difficult to talk on the phone, so many of the impromtu phone calls of a social nature have stopped - so much of my limited social interaction is either remotely on line or valuably face to face with those who have the time/inclination. Many of my relationships have become more fragile because of this, as simple exchanges in the past are now ever more challenging . I find my contributions lessening as I rehearse every exchange internally. Speech is a much unappreciated gift.
In other news....
I had my degree qualification confirmed recently, so I am now the proud owner of a first class honours degree - sadly though I will be able to make the ceremony to receive it so will do so 'in absentia'. Never the less I allow myself the feeling of pride and satisfaction of the authentic achievement.
I still drive on occasion -an automatic car, which I feel and express that I am confident and competent to do so.Giving me some sense of autonomy/freedom that maintains some sense of self. I am just unable to walk far once I have got anywhere, so am fairly limited to pub lunches and cinema trips :)
Fatigue and sleeplessness are causing havoc with my system at the moment sometimes not able to sleep until 3am/5am leaves me tired or out of sync with the world - I am trying various strategies to try to solve this intrusive problem. It really is a daily battle just to get enough sleep - to facilitate the rest and repair necessary to face the next day.
My social circles are ever decreasing as I find it difficult to talk on the phone, so many of the impromtu phone calls of a social nature have stopped - so much of my limited social interaction is either remotely on line or valuably face to face with those who have the time/inclination. Many of my relationships have become more fragile because of this, as simple exchanges in the past are now ever more challenging . I find my contributions lessening as I rehearse every exchange internally. Speech is a much unappreciated gift.
In other news....
I had my degree qualification confirmed recently, so I am now the proud owner of a first class honours degree - sadly though I will be able to make the ceremony to receive it so will do so 'in absentia'. Never the less I allow myself the feeling of pride and satisfaction of the authentic achievement.
I still drive on occasion -an automatic car, which I feel and express that I am confident and competent to do so.Giving me some sense of autonomy/freedom that maintains some sense of self. I am just unable to walk far once I have got anywhere, so am fairly limited to pub lunches and cinema trips :)
That's it for now ...... take it easy and enjoy life 'out there' .....
Thank you for sharing your journey. I found out in 2014 that I have the mutation for genetic CJD and I just do not know what that is going to mean. I am 34.5 and wonder if this means I will develop symptoms or not. There seems to be such little information out there, so I am thankful to have found your blog. I have just started reading.
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