General life feels like quite hard work at the moment ; everything takes so long - even putting on a pair of socks requires physical effort and focus, everything must be done 'mindfully' as many 'automatic' movements or tasks often have to be done now with greater concentration - all of which take away from my 'daily energy bank'.
I feel a general background dizziness now and pins and needles in my hands similar to those that I used to feel in my feet and legs - at the moment making typing/writing more difficult.
I am determined to work with these difficulties,adapt and maintain my energy for the focused events that punctuate my days/weeks. Saving energy where I can to enable me to function acceptably when I require.
This week was much better for me, with less impact from professionals dealing with my long term care I found I was able to re-engage with 'normal' day to day life and managed a few hours back at work helping with a new exciting project. I hope to do a few more hours each week and try to get all my professional health appointments more compressed into a more workable, less impactful timetable.
I am mindful that I need to spend a more appropriate amount of time on self-care, carrying out exercises prescribed by physiotherapist and better exercise for my aching legs - something I have not paid enough attention to this week. My current issue being that my days are short, too tired with less that 8-10 hrs sleep and the slow pace at the start of day makes for a less full day; but that's how it is for me now :-/
As this week ends my thoughts turn to a trip to London next week; not of the tourist kind, but a trip to the U.C.L.H. and the specialist clinic monitoring my condition/situation. A three day event with all the travel and difficulty involved with this activity right now. Tuesday is the main day of focus where I undergo tests cognitive ,physical and otherwise. The main aim to get an understanding of my (I would say) current decline. The information also used as part of research and general further understanding of this neurology. I am convinced that the information gathered from the individuals involved in this study hold the key to a therapeutic solution & as mentioned last week a trial approach to therapy has been evolved, although unable to offer this to people in a situation like mine as yet.
As I am unable to use public transport due to distances to walk, stand I am blessed with a door to door travel arrangement for this journey facilitated by the health service - I'm thankful for this & would be unable to make the journey with out this provision ---- thank you :)
I'm finding it hard thinking about Christmas as I know it will be my last coherent and possibly physically present one - the temptation to vocalise this and make it a 'big special one' in some way .But that's not really my style - a more humble approach feels more like me. See what happens and trust that the right thing will evolve.
Christmas shopping brings anxiety on many levels - finance, ability to carry out the shopping -stumbling around/access etc, not in the mood......
I'll wait a couple of weeks and I'm sure I'll get it done when the mood/opportunity takes me.
For today a restful day is in order as I feel the challenge of the day will be the new Spiderman jigsaw, courtesy of a good and much respected friend :)
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