Week 33/34 : Middle phase

Good news first - funding and plans are in place for the house extension- this will create a downstairs room for me with adjoining wet room/wc etc This is happening just in time as I feel the expedition up and downstairs is becoming somewhat difficult.

 The time is almost here when I need to make the biggest practical adjustment to my life so far....

  The debilitating and frustrating lack of mobility has been causing me a great deal of upset and resulted in me finally winding down a great deal of my life activity.I'm now using remaining resources and energy on my degree study program and associated voluntary roles - the fatigue associated with this illness is hard to absorb into day to day life , it is a fine balance between doing too much and being exhausted and equally doing too little and 'seizing up'.

Week 35 - 38: Fatigue & focusing in on the big stuff.......

Focusing....

 

 

I've been focusing my time and energy in order to maintain the best possible life / purpose and functionality. This has, up until now, allowed me to have rest between times of the study and my most purposeful and meaningful therapy work.But even this reduced energy expended is beginning to prove tiring. I'm finishing up my degree with three big assignments to write and hopefully by mid July will have it all complete so I can move onto my next goal / project ...... ME!!

  I am now feeling real fatigue, even with my best efforts of self care ;so in a thoughtful and balanced way I have decided that mid July I will retire from all outward activity . This seems most appropriate as although I feel psychologically and cognitively highly functional it is my physical capability that causes me most upset,discomfort and restriction. I feel incomplete as a person without the physical capability and presence i once had and can sense this 'reduction' bleeding into my congruent self. I feel I am starting a process of letting go of what was and accepting what is to come ..... a peaceful and calm process which has involved some difficult decisions but will enable me to slip into the background and a more reflective comforting life. 

 

 

  Now only able to walk a few feet and muscle tone wasting away, the disease is clearly advancing. I spend much of my time in a static seated position but endeavour to get up and move about every so often and have developed some instinctive exercise to keep my legs moving and not seizing up.On the odd occaision where I HAVE to walk around or to a location outside the home-this is proving more and more difficult even with the help of a hateful walking stick. This lack of activity is leading to weight gain and a lack of fitness - even with my reduced appetite.

  A new symptom has emerged - pain in my upper arms & I mean significant pain .... consultation with GP and specialist clinic have led to no firmed up answers, all I know is that it's bloody painful and will have a follow up GP appointment to get some sort of pain relief whilst I try to understand the issue.

  On a more practical note the extension to the house, facilitating a 5m x 4m living space and adjoining shower/toilet room is about half way through its build- I hope to move into this space in early July - atleast this will eliminate the expedition up the stairs. I have renamed the extension from it's previous incarnation of 'Death box' to a more warm and friendly 'Snuggery' - this build although gratefully received does not fill me with much excitement - it's a means to a very premature end .Whilst the internal adjustments are made to the existing house to accomodate the new space I will look to move somewhere away from home as I feel the disruption will not be helpful to me.
I do my best to feel engaged with the project - whilst I really just want it done and everyone to bugger off and leave me to it...... dying that is.

  I intend to use my remaining time on 'being not doing' so I may revisit some hobbies or interests but more likely to take it easy and spend time with close friends and family over the remaining time.