Week 78: Here and now.

I wrote this a while ago and I have been reflecting on meaninglessness v purpose recently ,so I thought it would be valuable to include in tracking my journey...
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Purpose....
I've been thinking about this alot and I was reminded of this today.
When at the lowest point and one feels 'what is the point?' or 'why bother?' if you slow down and really feel.... there can be found a deep yearning, just near the pit of the stomach close to deep sorrow (that I have only experienced once ,at my mum's funeral).
  This yearning, for me, is a purpose; the very thing that keeps pushing me forward,when there is little reason to.....some people call this faith.... for me it is a purpose, when this is lost ,I wonder what follows......
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Over the last few months I have been working through a difficult time;the short,dark,cold days along with my physical deterioration have been a real challenge. Any walking is now really hard with my crutches,and after several bouts of illness over Christmas and New Year I was seriously at the point of giving up. However, I decided to live day by day (even hour by hour some days) and accept the difficulties - although I do not like my enforced minimal existence -it is all I have for now.
 

Some recent change has helped me shift some of this depressive period.
A new self motivated exercise regime designed to give as much strength and movement to my legs as possible, at last finding a physiotherapist to massage my legs now inplace and a person centred therapist also now available weekly to help me process some end of life decisions/thoughts and offer much lacking psychological support......all this combined is helping me to manage better. It seems my self care is becoming a full time project.

I am going to be looking more closely into diet and nutrition over the next few weeks so I welcome any dietry tips/super foods that work for you that I could adopt into my smallish basic diet.
 

I intend to start painting some stuff very soon now that I feel a little more centred and may share the results on here in the future.

In the last week I felt well enough to spend some time with friends I had missed and been out of natural contact with for several months. It was good to spend time once more.

Overall I welcome the lighter days and yearn to be outdoors again in the fresh air ...looking forward massively to the spring/summer months ☺

Jolly Christmas....

As I write this blog I am sorry to say my life has become meaningless.....

A sedentary existence has befallen me, and I now do nothing more than sleep/ eat/ read/ watch tv or stare at the wall searching for some form of stimulation or meaningful time absorbing task. Non appears; and as I am so set against 'filling my time' with activity such as jigsaws,games and the like I've discovered that I am unable to function well without meaningful human 1:1 contact. A quick visit from family is well received and helps, but nothing replaces the 100's of weekly transactions I am used to. I am struggling to adapt to the loneliness.

I have just about given in on the walking as my inactivity and muscle wastage on my legs is becoming too difficult to overcome. This is causing me great distress and discomfort. So adverse to wheelchairs etc.

Sleeping patterns have worsened , with so little physical and psycholgical exercise I am simply not tired at 'bedtime' and lay in bed for hours,willing myself to sleep. I don't 'do' medication-so sleeping tablets are out of the question.All that remains is for me to figure out a method or strategy.
I am truly wasting away in every sense.

My DIGNITAS option looks ever more 'favourable' ...... I feel an escape from this situation is ever more relevant now. I sense a feeling of being burdensome on those close by..... ignored and missed - this is my feeling. The deterioration is hard enough in its own right, without other issues being added to,
'why does no one understand!!!'
I feel like screaming at regular intervals.
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I am hopeful of a short break to the coast this week ,and that a change of scenery and environment may help with my current view of things. Hope is a strategy after all ....

However, to you all I truly wish you a Merry Christmas and a fruitful 2017....

It's been a while...

It's been a while.....

I have been battling to maintain myself functionally over the last couple of months as I sense this disease is taking a hold over me now. A cognitive 'blurring of thoughts' and subtle mobility/associated difficulties are now creeping in. I have given up on the swimming & cycling as it is too hard for me to summon the energy to carry out much more than a short walk from the living room to the bathroom or bedroom; always accompanied now by a pair of crutches, walking without being almost impossible. The wheelchair stored neatly with dust and cobwebs in the shed is becoming more of a reality.

I have considered/refected upon my life so much over the last couple of months that I am exausted by it - but with little else to occupy my mind and spirit -the subject of my demise is very prominant with me, always. My initial thoughts about 'dignity in dying' and how much suffering is acceptable has led me down a path with Dignitas - where I have joined the organisation as a member and hope to make some initial visit soon, this seems like a good alternative ,to me. 

I am not prepared to hang on for the sake of it.....

My social circles are ever decreasing as I find it difficult to talk on the phone, so many of the impromtu phone calls of a social nature have stopped - so much of my limited social interaction is either remotely on line or valuably face to face with those who have the time/inclination. Many of my relationships have become more fragile because of this, as simple exchanges in the past are now ever more challenging . I find my contributions lessening as I rehearse every exchange internally. Speech is a much unappreciated gift.

In other news....
I had my degree qualification confirmed recently, so I am now the proud owner of a first class honours degree - sadly though I will be able to make the ceremony to receive it so will do so 'in absentia'. Never the less I allow myself the feeling of pride and satisfaction of the authentic achievement.

I still drive on occasion -an automatic car, which I feel and express that I am confident and competent to do so.Giving me some sense of autonomy/freedom that maintains some sense of self. I am just unable to walk far once I have got anywhere, so  am fairly limited to pub lunches and cinema trips :)

Fatigue and sleeplessness are causing havoc with my system at the moment sometimes not able to sleep until 3am/5am leaves me tired or out of sync with the world - I am trying various strategies to try to solve this intrusive problem. It really is a daily battle just to get enough sleep - to facilitate the rest and repair necessary to face the next day.

That's it for now ...... take it easy and enjoy life 'out there' .....

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 :-)