Living with Inherited Prion Disease: Week +17 : Getting 'through it'.....

Thank God that's over......

I've struggled over this Christmas period, hearing stories of what people are planning over the next year or so, their own lives and continuing adventures as mine seem to be coming to a sad premature end.... I was really so pleased to see everyone , but every one of these encounters (normal to others, but tinged with sadness for me) and their accounts, prodding me about my own slippery journey into disability and eventual demise....it's been tough, really tough.

This Christmas, for me, has been all about struggle... struggling around the shops to try and get some gifts, struggling doing the food shopping, struggling to carry things from the car to the house, struggling to help with Christmas dinner , struggling to put the bloody socks on that Santa brought me - the struggle frustrating and debilitating.....

I thought some 'normal' activity might help.... a trip to the pub on Christmas eve!!!
(left me feeling less than useless, a seat had to be found whilst others able to stand and socialise ...I felt noticeably different to the others and struggled with this, once again reminders of this protracted death everywhere), hardly being able to walk out of the pub (not beer induced) but product of a long walk earlier ( around 200 yds ) :-(

Struggling requires energy, focus and desire.

I'm not liking the struggle this illness is bringing.

A trip (literally), earlier in the day to the Boston 'Stump' -church did allow me some peaceful/tranquil reflective time; thinking of ALL alive or otherwise ,lighting a candle in their memory before gathering myself for the festive celebrations. Also asking for a prayer for myself to help me through the difficult time ahead. I found some clues for myself in this environment.

Peace - quiet - tranquillity - acceptance - hope - surrender

As I sat watching my family on Christmas day opening presents and the usual activities that accompany my family Christmas I was left feeling empty, emotional and surplus to the situation, I have held this feeling throughout - wanting others to enjoy their time (as normal).

I hoped a visit to the coast on Boxing Day would help. A nice catch up with family - however, a tantalising stroll on the beach too much for me to contemplate - again I became a bystander, so sad for me as it is my favourite place, a place of connectedness with raw nature, a great place to reflect, ruminate, plan and re-energise - I really need to find a way around these difficulties opting out of them all seems premature and would be quite damaging psychologically at this stage. Maybe selective and appropriately chosen will be the way forward.

As Sunday evening approaches I've about had enough of sitting around inactive (I can do that anytime!) I'll be pleased when tomorrow comes and I can start getting back into some productive activity, study/ some work and helping a few people this week. I really miss interacting with like minded & connected souls..... hopefully this week will help start this re-connection as the world comes out of its seasonal pause. I've been doing anything to keep my mind stimulated but have felt obliged to enter into the customary loafing around watching TV and watching people on their variety of electronic devices. A revisit to some meditation and self-care has been a much needed resource for me to survive the last few days.
Who'd have thought a time of supposed giving and good wishes could bring such difficulty ???

I've decided to indulge myself in my Take That DVD from Santa as I write this blog this eve..... the big man has good taste !!