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 :)
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/
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 :)))
