Week +12 : Facing the future

 

This week has tested my strength, resilience, hope, faith and sense of self massively ............. forced to focus on my ever decreasing life cycle.

Appointments with many support professionals (seven in all) at various points in the week, varying from advance care plans to hospice intervention/type/needs to physiotherapy. Often requiring me to focus on the long term difficulties I face, (which I appreciate I will) but I'd rather do it in my own time and at a 'convenient' time, not these 'enforced' questions and answers..... " so do you think you will have a bed in your living room when you can no longer get upstairs" or " have you thought about moving?" - away from my family to a hospice ?? or perhaps "you could move to a bungalow away from your family" " would you like to die at home or in a hospice?"

All of which explorative questions I am sure meant with good intention...... but shattering to the individual on the receiving end (me).
Further questions probed at physicality and symptoms - I'm more than aware of where my issues are and do not feel the conversations are helpful to me in retaining my positive, robust approach to life.
These conversations are necessary for the future planning and immediate organising of relevant help, but still equally painful to have. My process dictates I'll talk about this in the new year once I've been able to enjoy my last coherent Christmas/New Year. 

I did however, feel great strength and energy from the physiotherapists advice/support and guidance - some useful exercises developed and a very caring/supportive nature.
I was pleased to end the week with this - it has renewed my focus and determination. 

I was thankful mid-week for a treat ..... my cousin had arranged a day at the local health spa
in Belton Woods....

 - so thankful for this ..... a swim, steam room, massage (expertly done) and a pint of Guiness such a welcome respite from the upsetting and challenging events of the week. Helping gain some momentum for the end of the week.... and of great benefit to my aching body :)

 

The end of the week ; - a trip to Birmingham to the 20th family day for the CJD Support Network - massively relevant and suitable to my illness.

I met several old faces and some new - all with various relationships to this illness- it was a difficult time but engaging and necessary for me at this time. I was really touched by one 'story' of a family dealing with this illness themselves; I found myself humbled and thankful for my own situation - although mine is difficult ,certainly not as painful as the one described to us. Heartfelt best wishes go to these people.....

One presentation touched on a therapy that has been developed to treat this disease, however the £13million funding need prevents the drug being trialled further for my particular situation at the moment.

It is hopeful though, that it appears this may be available for others in the next ten years or so, I was pleased to hear that it may help others ..... but sadly not in time for me :-/

 

This week I'm more able to leave the horrible week last week behind and focus on a few hours back at work and get into writing my assignment for my degree course without too much distraction - lets see how we go :)  

 

Having read this blog back myself it sounds sad ..... I'm sad, yes of course, but full of energy, zest for life and focused on supporting others at the moment, so I don't dwell on these things and am quick to move on - there will be plenty of time for upset later , but for now there is much to be done .....

 

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As I close this week:
I'm reminded this week of my intention not to be defined by this illness and found this post on facebook relevant and energising :)

 



 

Here's some other affirmations/quotes that have caught my eye and emotion this week.....