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.....