It's a small world after all......

 

 

I was reading back over the last year of my journal/blog and it has struck me how my 'world' is reducing alongside my diminishing health and quality of life.

  A recent physiotherapy appointment crystalised my physical difficulties;as it is now apparent I do not have long to live 'independently' as I struggle to make my way from bed to anywhere other than my chair / bathroom. This has brought back into focus the big question I have,that of 'what is the least quality of life I prepared to accept' .

  The dignitas option begins to look more like a real alternative to explore further. I find it disturbing to imagine myself just 'existing' on a downward spiral of physical and cognitive function. Inappropriate and contradictory of my nature / 'way of being'.

I'm trying to find new focus and goals and have enrolled on some new distance learning courses. But already am getting a sense of 'what's the point?' It is hard enough to even get up /dressed and live each day without any further challenge. I'll give it a go this week and see how it feels.

 

  Life around me continues and I am proud of all my direct family as my kids have all now left school and seem to be on track with their own respective future plans/goals. It is heart warming to see them all following their chosen path's ;all very different but befitting of their interests & character. Tinged with sadness for me as I won't be around long enough to see the growth etc.

   There is a sense in me of beginning to bring closure to financial affairs and some friendships where it is too hard for me to engage as I once could. I want to keep these relationships as special memories rather than disfigure them with my altered state of being. I am processing 'endings' it seems on a daily basis - sad and necessary at the same time.
I am going to spend the next week or so focused very much on how I can live better in this reduced state and will write again soon....

Week 52: The erosion in time.....

Week 52:

So a year has passed since my 'symptomatic diagnosis' and the year has been punctuated by many memories, not least attending my cousin's wedding in Spain (an unforgettable experience :)

As the year has progresssed I have found myself 'letting go' of material stuff and relationships as part of the preparing for the future.

It is this anticipatory grieving process that is so painful and exhausting, whilst still attempting to maintain some sense of a life in which to function.

Lately I have been working through accepting my lack of purpose and ever decreasing social groups and experiences. For me, I have always explored new relationships and groups, constantly seeking new experiences and stimulation; so I am finding this extremely difficult.
As I have developed personally over the last five years or so, I have found that authentic,deep relationships have become ever more valuable rather that the volume of relationships.I have a few, so very valuable friendships and relationships that are now 'mis-firing' due to my own lack of ability/capability- and this is unacceptable to me; I have a certain standard of existence that is acceptable and this 'line' is becoming ever more challenged. However, my study and self reflective time has enabled a good level of skill in coming to terms with & understanding this process. I have plenty of time to ponder on such matters lately...
It is the letting go of these friendships that causes me most upset and anguish, as I prepare for the next phase of this debilitating illness.

My days, these days, are much shorter as I need much more sleep and the fatigue associated with this illness often leads me to sleep further in the daytime. My mobilty is now severely affected as I cannot walk hardly at all, even with the assistance of a walking stick. I am at a loss as to how I will manage when unable to walk at all - a wheel chair seems an unrealistic option for me ..... I am exploring options.

On a positive note I have secured some funding to help employ resource to help me carry out some of the tasks I can /will not be able to carry out in the near future. This is atleast allowing me to enjoy some time independently as possible and still enjoy a small percentage of my remaining time.

I am pround to announce the three years of university study has culminated in a first class honours degree in what was to be my new vocation - Humanistic Counselling/therapy ; a bitter/sweet moment for me....

In August I challenged myself to cycle 10 kilometers every day - for three distinct reasons;

• To raise funds towards CJD research
• To give me a focus
• To keep my legs moving

As we come to the end of the month , 310 Kilometers have been cycled and over £2000 raised, thanks to some very generous friends & family. I hope the funds will be put to good use by the charity.

Until the next time......
I hope you ALL enjoy every minute of every day - it really is a gift we often do not prize enough ....

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 :-)

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.

Week +32: Calm before the journey ahead....

The walking dying....

Signs and symptoms of this disease are impossible to evade, brought up in daily discussion with friends & family ... leading on from the all to familiar 'how are you?' which leads to a complex plethora of potential responses - my current favourite "breathing" . 

How am I?
Sad, lonely, frustrated, full of life and latent energy to express through the right channels, focused, confused, quiet, thoughtful, brave, scared, open, giving, retracted .

  I am just fine ..... ; with the exception of the lack of ability to physically 'get around' (walking) - this 'skill' now almost taken away is most disturbing - what can I do if I cannot walk ? (lots) but my attitude towards this enforced restriction is taking an interesting response - one of belligerent unwillingness to accept this is so. I am 44 years of age and not prepared to give up on life.
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The above section was written at the start of the week when my reserves were low and I was at a two-week long low point. However, something shifted at the end of the week when I took a break, away on the East coast of Norfolk. During the peace and quiet I realised that a simpler, more contained life is not such a bad thing. It gives me the opportunity to focus my mind on the end of my degree study program, my family/friends, my self care and well-being.
I have so much I can do at home from missed time gone by, focusing on pass times & hobbies I have not paid attention to for many years - I really don't mind. I've managed to walk around a little while we were away, which certainly made me feel less useless and hopeless.
 A new adjustment and adaptation.
  
  The next few weeks are less filled with appointments and activity than I have had recently giving me a sense of space and time to relax a little and take life a little slower. I look forward to this soul enriching time and will use the time wisely - taking great care over myself and the ways in which I choose to invest this valuable pause.

Great news on the house extension, plans are ready and just needs signing off - the expected duration of the build is 6 weeks; so all being well this much needed space will be ready by the start of July at the latest; so at least I will be able to enjoy the summer in more suitable surroundings & prepare for the road ahead.   

   

 The strength keep on going is returning .... a deep rumble from somewhere deep..... the spirit I believe. The true soul speaking and reminding me to never give up :)