Weeks:42-43 The black dog returns.

Testing time:

So, ......I moved into respite accommodation for two weeks to allow the building project to be completed at home as promised by the building contractor; only to be told at the last minute that they would not be finished and would require a further two weeks. So I have returned to a completely inappropriate environment and at the same time attempting to formulate/write my last written piece of work for my degree. To say i am angry,upset and frustrated would be an understatement.
   Along with the difficult process of managing my physical/mental health as part of my terminal position; the net result is a hopeless & powerless state of depression I have not felt for many years, debilitated and dis-empowered beyond recognition. No longer are there any reserves to 'dig deep' into, I have purely come to an end mentally. Funny how this 'giant spanner in the works' has disturbed me to the core......

  I had designed a physical / mental program of experiment in neuro-plasticity for the month of July - all of the above screws up this program, of which I had high hopes of impacting and redirecting my illness in positive ways.
   Cycling 20 k per day, swimming, mentally challenging activity too; to attempt to re-train my eroding neurological functionality. Now postponed due to poor implementatìon and delivery of a simple build project. I am soooooo angry....
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In other news apparently there was a referendum and other significant political unrest - I believe a lot to do with the disconnect between politicians & the real issues. Victims of their self fulfilling propaganda.I am hopeful that things settle & we can begin to build a better Britain, whichever side of the fence we occupy.

I'll add more to this blog later-but having another sleepless night I thought I would make a start/put it out there....

  Another difficulty is putting together an end of life care plan and advance directives; clearly this is psychologically challenging for me - I live in the positive and opportunistic place; a task like this brings great difficulty and a deep reality check. Not an easy or pleasurable experience, to have to plan and think about not being 'here' anymore. Although, I feel that I will make arrangements for a more dignified ending, these necessary policies and procedures have to be adopted ..... or do they? ..... lets see. I have a final sign off of these plans in the coming weeks, so hopefully once July is done-

 I will be living in a new space and ready to enter the next chapter - one of self care and retired activity. 

  Good will and kind thoughts to you all...... 

Week 39-41: Closing the chapter.

New chapter.....

As I write this update I am staying away from home for some 'respite time' as the building works at home have now moved into the main part of the house to facilitate alternative use of space; i.e.construction of a wet room in the ex- utility room, re-configuring the dining room space and completion of the new space a 5m x 4m room. The disturbance too much for me to contend with in my reduced state, although the building works are 'likely be complete by the end of next week.'

  I can now start thinking about how I want this room to work for me at this current time before it needs to become a dedicated bedroom when I am no longer able to be mobile. We have flooring to put in and to decorate internally, hopefully by the end of July - we will be done and all can be returned to 'normal'.

  I am currently writing some final work for my degree and completing my voluntary therapeutic work as part of this qualification. Once completed, (mid July),  I can retire properly and move onto a new chapter which I hope to be full of fulfilling activity, focused on my own self care, well-being and health.

  A holiday somewhere in the UK seems like a great idea in late July before I sense my world will become much smaller and more contained physically to my home environment.I don't mind this it will be good to spend some quality time at home after so many years of time invested in other things.

  From a health perspective - generally things are quite stable apart from my ever reducing capability to walk, which in itself is clearly very limiting and takes away much of the ability to get out into the community and enjoy the outdoors. I am surprised by my robustness in dealing with the complexities of this illness and feel the the last few years of self development are invaluable in assisting with this balanced approach.

  Still able to drive well I am keen to secure the services of a P.A. to accompany me on days out/appointments to maintain some independence in the short term - I am hopeful this works out with a close family member, I am awaiting some funding to support this & have been waiting since January for the very slow wheels of the healthcare support system to turn.

 I've been working on living in the moment and living life a day at a time which has really helped me function well in the last month or so ......   for today it's back to the F1 and football :-)