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 :-)

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 :)

Week + 31 : Debilitation

 Energy is something I reflect on a great deal. I find I hardly have the energy to do 1/10th of the activity I used to ; I have to 'save up' my energy in advance of anything these days (even a trip to the shop or a social thing) can leave me exhausted . I struggle with this after so many years of actively seeking new challenges/experiences I am now confined to a much more simple & humble existence. Enforced reflective time is both a blessing and a curse, leading me to ponder about my foreshortened life.

  Thankfully I have a few weeks break from my usual schedule and I will be able to engage in some further restorative pass times (perhaps another holiday, get the paints out, jigsaws, drawing) that I am hoping with help me through until the end of June (a time specific for me - that will mark the end of my degree study) I am using June 2016 as a motivation to keep going with some vitally engaging self development. July 2016 seems another significant time - my 45th birthday, perhaps my last ?
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The site visit for the extension at home went well (I think?) this week and we should have a more solid plan in the next week, from there completion should be by end of June - I hope so as the expedition every night climbing the stairs is becoming a real challenge. This new space will enable me to function on the ground floor of our home with a self contained area for myself.

     

I felt a real sense of disappointment as the week ended - I feel really 'missed' - I've reflected on this alot and it would seem fairly common to at the end of ones life to think 'do I really matter ?' - I've concluded that this is the ego talking and humility and service to others is my purpose, I have always taken most pleasure from helping others so will continue to do so as long as I am able. I'll do my best to keep these 'self indulgent' feelings in check....

  With limited mobility I am finding it hard to get exercise, I walk less than 100m per day and I feel myself seizing up and losing muscle tone/bulk quickly. My only route to satisfy this shortfall at the moment is my road cycle, once I am on it and moving I feel ok - although I did come off it this weekend. I'll try and get out a few times a week now that the weather has improved somewhat :) 



Some new leg supports to try this week - the goal to enable me to walk unaided for a while longer- Tuesday is the day to pick these up & I am hopeful of a positive outcome.

I've decided to stop publishing the blog on facebook, but if you are interested in reading it in the future you can still find it at:
http://stuartmichaelthompson.blogspot.co.uk/

Week +30 : Getting on with it....

Getting on with it .....

Over the last week I have been really down in the dumps as my limited mobility and lack of energy since returning from holiday abroad had severely dented my spirits. I really was fed up...

However, at the end of last week I felt some energy coming back to me and engaging with some work this week has really helped me - I think I was in danger of becoming 'house bound' mentally and physically. Breaking out of this environment and getting back out into my familiar but energy rich, stimulating activities has really helped. These are simple interactions with others, that when isolated through capability mean a hell of a lot to me. My social circle is much smaller these days and I miss the days when I would interact with so many people daily. The limited opportunity I have now is ever more valuable to me  :)

I'm just about managing to walk around still - but this requires a great effort to achieve. I am pleased with this as I really feel without this ability life will take on a whole new meaning of dependence and frustration. (you may detect I am a little independent !)  I have some new leg supports being organised for next week & I am hopeful these may sustain me a little longer.

The house extension still seems viable with a site meeting this Friday to establish physical aspects of the project - so positive progress at least, this new space is getting to a very critical phase now as I struggle to climb the stairs now...

I am hoping to get some funding to enable me to employ someone to go out with me & assist with some admin stuff. Hopefully this can be made to happen sooner rather than later as the window of beneficence for something of this nature is narrowing - the 'professionals' involved seem to be having difficulty working out which 'pot' the funding should come from - this delay is not helping :( I may have to let them know their bureaucracy is not helping my cause much ...

My new 'monthly holiday strategy' has taken a next step and my daughter has helped organise a weekend away to another of my favourite places in the UK that holds many special memories - some sunshine in the UK next to the beach for a weekend .....

 

........... & something to look forward to ;visit one of my favourite pubs in their village  :)    

    (Winterton On Sea - Norfolk ) well worth a visit :)))

Week +29 : Tired.....

Tired of the struggle now....

I've returned from a fantastic break in the sunshine in Fuerteventura and really enjoyed the time away in the sun. It really was good to feel the warmth of the sun once more. The journey was difficult and I really struggled to get around, but with generous assistance I made it ok ...... I can't see I'd manage it again now though. This put a massive downer on the whole thing for me as I won't accept that my disability is finally beginning to dictate what I can and more importantly cannot do - I find this really frustrating and upsetting. I've stated before I accept the diagnosis and prognosis - what is becoming ever more challenging is the cruel way that life is slowly being eroded.

  Since returning home on Friday - not only have I been really tired but I feel totally debilitated by the situation. Usually I would be able to find a way of putting a positive spin on things but I have simply run out of finding new ways of looking at things. I really feel defeated right now. 

  The main perpetrator of this feeling is the lack of mobility I am suffering with.... I can now hardly walk more than a few paces without losing my balance and my 'gait' is so noticeably poor that I struggle to move well. All the therapy in the world can't beat the inevitable onslaught of this disease. It's so hard watching life go on around me when mine seems to be going in reverse .....I think I have a case of the Benjamin Buttons'

  The extension to my home is still ongoing in the planning stages and i am hopeful this will start to get some traction soon - it needs to !

  Tuesday brings an appointment at the local hospice to start the process of my advance care plan - I have some ideas about what this might look like but will see what the 'experts' offer as they deal with this sort of thing all the time. 

Otherwise it is a fairly normal week - the world keeps spinning and I will keep 'plodding on' for now.....

Week +28: Still having a break

Due to some difficulties I am taking a break from the blog.... hope to be able to write/share something next week.....

Week +27 : Taking a break

Back soon

Week +26 : Hurdling...

Hurdles:

Watch this .......
https://www.youtube.com/watch?v=mgmVOuLgFB0

This week presented new hurdles to attempt .... or not. It's more about choosing whether to attempt each, give up, fall over trying or amaze myself by achieving - never the less, life is presenting up more hurdles by the day....

  Sadly, my difficulties with mobility and the dizziness continue &  have meant that I am having to consider my abilities to carry out certain roles that I have commitments to in various areas of my life. This has led to withdrawing from some of this activity whilst attempting to remain focused on the vital aspects of 'my world'.

  Day to day independent existence is becoming more and more challenging with 'simple' tasks now difficult .


From dressing/getting ready for the day, 'planning ahead', motivating myself for the activities ahead - some thoughts of "what's the bloody point" are present this week , much easier to 'give in' and just focus on breathing/existing than chasing these ridiculous goals I have. Everything seems such an effort these days - all the things we take for granted now requiring effort, concentration, focus - all very tiring :( 



 A Social Worker assessment reveals I do not 'score enough' on their assessment to warrant support - I was hoping for some funds to employ someone to accompany me on days out and help me with some of the stuff I find difficult- while I can. 'Great news' though they have referred me to another team - this will take precious time and once the support surfaces will have missed the mark somewhat, and have missed the short window of time where this may have been beneficial - again, it places the organisation, cost and stress on me to organise this myself. I am rapidly losing faith in these 'support services'.

  In all of this - these services, whilst well intentioned, do not fit the immediacy of my situation - to fight for this 'help' just takes too much energy and it's easier to give up and withdraw, which I believe happens all too often.

  No news on the extension for my home this week and another week passes by - my instinct tells me this is going to happen too late for me to have any benefit from it - it's already taken three months and nothing has happened physically as yet. Immediacy is key here - not something I feel is apparent.

  I am just about able to get around the gym still, and try to get there twice a week,  so am taking some of my frustration and stress there - cycling and some upper body training is helpful and a useful distraction for me - although I am very self-conscious about my poor walking around the facility and wonder how much longer I can keep this up. 

 I've some time planned in with a great & close friend later this coming week - someone who 'get's it' - so it will be a time for me to relax and feel accepted/comfortable -and going to the theatre too for some culture / new experience:)

  The abject horror of trying to live with this debilitating illness is proving more difficult than I envisaged, how the other family members 'coped' with this erosion of ones own sense of self is beyond my comprehension - they must have had far more resilience and ability to keep on going than I have,
 

 'How does one live effectively when faced with such a situation?' -

Take one day at a time? accept and let it happen? give in? give up? fight on? do nothing?
 
 I've certainly not found the 'answer' - perhaps its some of all of this or non of it - maybe it's just to keep breathing and showing up every day, give what I can, rest when I need - and keep the faith that I will deal with whatever comes along the way, and that the right help will come when it is supposed to ...... put faith in myself and the universe and everything else will sort itself out.......

  The coming week will be reflective space for me to think about how I adapt/accept my life at this stage and make the necessary adjustments to allow me to function acceptably, for now. 

Wishing everyone a vibrant week .....

Week +25 : Appropriate steps....

As promised some photo's from last weeks trip to the Peak District....

 A week of quiet acceptance unfolded as the week developed , my physical capability starting to become a limiter in my life as my ability to walk and navigate my way around becomes increasingly challenging. I found a myself getting frustrated with this and am struggling to find an acceptable way of adjusting without compromising my independence and purposeful existence. I have alsohad to look at ways of reducing my 'out put' once again and look at re-balancing things, taking into account these physical limitations. Sadly, this means giving up on some of the voluntary stuff I've been doing and finding rewarding, fulfilling - but my priority is good self care and being at my best when I most need to be.

  Equally one of the symptoms I have been experiencing and monitoring for a couple of weeks is one of a strange dizzy feeling - this seems to be affecting my balance and leaves me feeling nauseous and off balance literally and metaphorically - I am asking for help with this to see if there is any medication to help. Unusual for me, as I like to remain 'clean' of any meds as I like to feel/sense my situation without the clouding or masking through medication. On this occasion though, I feel I need to do something as I am convinced it's related to brain deterioration - this might be the next phase of difficulty for me and may require further adaptation/adjustment.  

 A focused appointment on Tuesday with a 'new' professional (Social worker) as part of my support team seemed helpful and will help me secure funds to employ care directly- so initially this will be someone to accompany on days out and help with day to day admin/general tasks - I guess this will evolve into more focused support/care as time goes by - I feel employing someone at this stage will help me get out to do the things I want to do as/when I want to without 'leaning on' or relying on friends/family. The social worker should also help me co-ordinate all the other involved professionals, which incidentally, is a job in itself !!! 

  Hydro therapy again this week proved great as did a visit to the chiropractor and the culmination of this self-care focused day was a massage - all of these helping me feel suitably relaxed and focused on my needs. 

  I am mindful I have a meeting in a couple of weeks to 'sketch out' my end of life plan & must speak to some close family members about this - I intend to make this a point of focus in the next week - alongside the myriad of other activity and distraction - this is one thing I must do and is not in the arena of a delegated task ...... sadly :-/  

  Friday involved final study module with a short period of time to create a focused personal account of my reaction to the topic.... I will see if the creative part of my brain has something to offer :)

  Tattoo now healed - so able to get back to the gym, sauna, steam room, Jacuzzi routine :) I'd missed this & I certainly felt the benefit...


Saturday evening brought an opportunity to watch the movie Cast away (Tom Hanks/Wilson) ......

  As one of my favourite movies, I could not help but be struck by the metaphors for meaninglessness, hope, human spirit, determination and love for a fellow soul mate that endures through even the most challenging of circumstances- Chuck's monologue below always 'gets me' full of emotion, acceptance and depth ... 

   " We both had done the math. Kelly added it all up and... knew she had to let me go. I added it up, and knew that I had... lost her. 'cos I was never gonna get off that island. I was gonna die there, totally alone. I was gonna get sick, or get injured or something. The only choice I had, the only thing I could control was when, and how, and where it was going to happen. So... I made a rope and I went up to the summit, to hang myself. I had to test it, you know?
   Of course. You know me. And the weight of the log, snapped the limb of the tree, so I-I - , I couldn't even kill myself the way I wanted to. I had power over nothing. And that's when this feeling came over me like a warm blanket. I knew, somehow, that I had to stay alive. Somehow. I had to keep breathing. Even though there was no reason to hope. And all my logic said that I would never see this place again.
So that's what I did. I stayed alive. I kept breathing. And one day my logic was proven all wrong because the tide came in, and gave me a sail. And now, here I am. I'm back. In Memphis, talking to you. I have ice in my glass... And I've lost her all over again. I'm so sad that I don't have Kelly. But I'm so grateful that she was with me on that island. And I know what I have to do now. I gotta keep breathing. Because tomorrow the sun will rise. Who knows what the tide could bring."

I'm still Breathing & waiting for a sail......

 

Week + 24: And on we go...

This week ended with some intense study regarding 'stress' as a topic of focus.

As someone who has experienced a high level of stress in the workplace (for a sustained period of years) due to the nature of my previous career, and in my home life (some self inflicted, some not so). This 'focus' left me reflecting a great deal about my relationship with stress and the impact it has had on my health in the current situation - there is some theory that suggests that stress can be something that influences an earlier on-set of symptoms of the neurological inherited CJD. Although, I can do nothing to change the past I am left with an acute sense that I had probably not helped my situation by existing in the pressurised management roles for so long - however, I did not know of my health condition at the time, so it would have been impossible to knowingly adapt at that time - never the less has left me wondering about the impact stress has on all our lives and how we collectively or individually find distraction or coping mechanisms to help us 'cope' when we could be really listening and noticing what is going on before the stress manifests itself into a more serious health condition.

That is my reflective offering from this study time :)

 

 

However, I am finding looking at my relationship with stress is proving to be very interesting and a stark reminder of good self-care and balance in my life !

  Otherwise, this week had a great deal of time devoted to relaxation and self-care, after a few weeks of being very busy (for my current capability) , I really needed some 'down time' to re-charge my energy to enable the cognitive focus required at the end of the week.
I did have a few health related appointments , but these were all at home - so made life a little easier.

  My continuing battle with trying to walk unaided goes on - proving more difficult by the day, but I am hanging on (not literally ... yet !). Having looked,with my physiotherapist, at the leg brace provided by the NHS I have decided it is not suitable for my needs at this time and will contact them for something more so; it's taken me a while to get to a place where I don't think what has been provided suits my current needs and felt able to challenge this. Even so I need something as my legs really do become painful as they fail to work correctly - the hyper extending of my knees proving to be the most difficult aspect.

  I have noticed a lack of connection with family recently (not immediate at home but other important family members) - I sense this distancing - often due to busy lifestyles and commitments, but still leaves me feeling sad & 'missed'. Time is limited (certainly for my willingness to live with this condition) and I find my urge to want to spend more quality time with these special people is not being reciprocated - I have settled on not saying anything verbally and kind of left hoping there may be a shift in awareness. Perhaps, as I seem to be declining 'slowly' there is a view that there is more time & the immediacy of the illness is less daunting - I guess I just don't know about what others think and can only focus on my 'process' and what will be will be.

  I was deeply moved by the BBC program this week about Simon's end of life choices and found the documentary moving and resonating. Consciously reminding me to 'get my house in order' regarding this area - something I have started to work on with the local hospice, but as we all know the ability to make decisions of this magnitude require travelling outside of the UK, I've included the link below & encourage anyone interested enough to watch it.....

    http://www.bbc.co.uk/iplayer/episode/b070jm26/how-to-die-simons-choice

  The end of the week presents a possible trip to a place I travelled to with family on one of my most memorable holidays - this was  travelling around the UK in a motor home . This was so freeing and an incredibly evocative experience for me & I hope revisiting one of these places proves to be a positive experience & will share some pictures next week ....

I wish all of you a vibrant and colourful week :)