Week + 22: Vitality

Reflecting this week on vitality - I'm doing some extra study and looking into this term ;it suggests there is no death with out life, no light without dark etc. So it kind of reminded me of the paradox's involved in daily living and life in general .
Perhaps why we face difficult situations but strangely these experiences deepen and enrich our lives and experiencing....

  I've made it my 'mission' to live life the best I can, while I can and generally feel enthused and energised by this approach, whilst still maintaining my self imposed 'rules' of self care and balance to ensure I can be at my best when I need to be and can give myself permission to rest as much and as often as required.

  This week started off with a very challenging appointment at a local hospice to approach planning around advance care directive, my will etc. - painful but necessary and something I will spend the next few weeks consulting family and close friends about before writing a formal plan...it got me thinking about epitaph's and I liked the following :

"That was fun. Let's do it again."    or     "That was weird"

    ........ I was wondering if anyone thought these would be fitting/amusing ....

                               

 I collected my new 'motability'  car on Wednesday. This is making driving much easier and driving position higher; so easier for me to get into & out of the car. Made a big difference :)

  I've started some personal therapy this week (by choice) to explore spiritual and existential areas around my death and my feelings, thoughts and responses to this. I am hoping this therapy will bring further clarity and peace for me in this 'journey', and with a suitable fellow traveller found in my therapist - this should be an appropraite and well timed experience for me.

  A couple of sessions at the gym and some time in very therapeutic steam room/sauna and Jacuzzi this week have all helped me feel that my leg strength is good , if not particularly well co-ordinated. Although I appreciate this strength will not be for long, for now it seems to be extending my ability to walk/drive and remain mostly independent.

  It was the family open day at the clinic associated with this condition and family members attended to find out about the condition and how it is manifesting in our lives. I didn't attend as the journey is difficult for me & my desire to be in that environment at the moment is not as strong - I would rather stay in the relative 'safety' of my closer geography.  Hopefully this will open up much needed dialogue and connectedness regarding this awful disease.

  We have an important meeting this week with several professionals and stake holders regarding an extension to our home ; looking to facilitate additional space to create a wet room and downstairs bedroom enabling me to be at home when the difficult times arise. This meeting seems to be critical in finding ways forward to make this project happen - and needs to before it is too late. I really do not wish to end up in a care home at the youthful age of 44 years. Anyway, positivity says the extension will be happening in the next six months :)

Wishing everyone a great week - whatever you are up to on this fine planet !!!

Week + 21: Strength and faith

Finding strength ,both physical and psychological is part of my current 'self-care' agenda & I think I am finding a healthy life balance, for now.

  Tuesday was a very health focused day with an appointment to have leg braces measured to stop my legs from painfully 'locking out' or hyper extending, this is what has been causing me great pain and discomfort when walking and I was pleased to get a date for a 'fitting' in the next couple of weeks.
 
 I think they look something like this .....

 
 Chiropractor appointment followed ; to maintain back problems following issues relating to a long term injury. Much better now thanks to a great practitioner :)
 
  Finishing up the day (Tuesday) with my first hydrotherapy session at the hospital.....
 

...again another great professional supported me in learning some exercises that I can with do with them once a week and at the local pool twice a week independently. All part of my plan to maintain leg movement and strength as long as I have decent co-ordination.

I think once the co-ordination goes completely then it is game over as far as the independent mobility goes, but for now I will carry on best as I possibly can.

  The physical activity continued throughout the week with two sessions at the gym and even a few miles on the road cycle. It felt great to be out again - although it was very cold, it was invigorating :)

  I've been using some of my spare time writing theoretical background stuff for a seminar due in early Feb, so this is keeping my creative juices flowing and stimulated. Heavily based on my life experience and the energy/focus that can be found when in an unfortunate situation such as mine. (not uniquely at all)  

  I have noticed a dizzy sensation becoming more prominent (ataxia) and my speech requires more concentration (dystharia), however externally feedback is that I remain pretty much the same, these changes are more evident if I haven't rested sufficiently of have over-done it.
My new rule is no more that 6 hours of activity per day & I've done fairly well with this - only slipped up one day over egging it ... 

 Good news at the end of the week was that my new motability car is ready for collection next week, this should help extend my ability to drive for a while longer :)  
....... we will see....will post a picture next week (it's another batmobile) !!!

  A fairly standard week to look forward to next week with a good 'social day' planned for Wednesday (this is my day to do whatever I wish !!!) brunch/coffee awaits .... 

  The project to extend the house and provide some downstairs space for me to live independently when the time comes is being pragmatically proposed with the support of family members - I am faithful that people in statutory bodies will see the benefit of this and pass funding/planning. If not the alternative is not very appropriate..... will fight hard on this one as it's for the benefit of my family, my dignity and as comfortable as possible end of life situation as possible.

Have a great week & remember; when you need to keep going -

 

"You just do it. You force yourself to put one foot in front of the other, and God damn it, you refuse to let it get you. You fight. You cry. You curse. Then you go about the business of living. That's how I've done it. There's no other way."

Elizabeth Taylor   

Week + 20 : Some plans for the future;

This last week was a vibrant mixture of experiences that one calls life.... and I found myself fully engaged, once more, after the Christmas/New Year lull.

 I find every day feels like a blessing and even more so when I am able to spend the time with special people or in productive activity.

 I'm able to work a little on a voluntary basis for a few hours each week to keep my focus and engagement with the general public and this is helping with giving me meaning, focus and drive. Where it would be easy to retire and 'fill my time' .... this more engaged way seems better for me, more energy filled and life enriched(if only in much smaller ways than I am used to) ; I am still able to 'make a difference'.

  A busy week last week, were I feel I over did 'it' and suffered at the end of the week with terrific pain in my legs mainly due to trying to walk too much I think, and the movement in my legs becoming harder now as my brain disconnects some of this function. I have a couple of appointments this Tuesday focused particularly on my legs to see if anything can be done to sustain them a while longer. I do have physiotherapy  and massages now, and whilst useful there and then - I'm not sure of the benefit in the day to day getting around.....I'm now restricted to walking less than 100m or so without experiencing real difficulty.
Some adaptive plans need to be evolved I'm thinking....          I find it incredibly difficult 'giving in' to this illness and resorting to the use of walking aids; as I know once I have, there will be no return...... however, I do count by blessings when my suffering is far less than some others have to endure visibly or invisibly. I have a commitment to a personal goal for the next six months I really would love to meet - to complete my degree study project & graduate. I do, however accept this is in the main out of my control for health reasons but I trust I will accept and adapt as I need to...

  Re-joining the gym this last week helped somewhat and with the associated benefit of a swimming pool, I think non-weight bearing exercise may be useful for a while. I feel and see the robust muscles disappearing from my lower legs already so any stabilising of this will be helpful, if not vital for me to meet my six month goal of able bodied independence.

  Tomorrow (Tuesday) I have an appointment to see what leg braces/support may be suitable and in addition a hydrotherapy induction - so basically a day at the hospital, although both appointments should be positive and fruitful.

  This last week I was able to commit to some future plans with a overseas holiday booked for a few days with family .....

.....and a trip to see a Shakespeare play with another really good close friend- both something I really look forward to. So I have something really positive in my diary each month to look forward to until April, when I will re-assess my ability/capability to manage with life and then figure out the next step ... small they may be but so long as in a forward direction that will do me. 

  Some catch ups' with good friends throughout the week helped keep my energy levels up and reminds me of what life is all about - these human connections with others that we often take for granted or pass us by unnoticed. I am so grateful for my good family and friends :) They fill me with great love and appreciation - which I see much clearer these days than ever before.

  Having told myself off for not asking for help recently, I was able to ask for help from two family members with some stuff I was unable to deal with (practical and administrative), and was happy to have done so as it help relieve the stress and difficulty 'normal' life brings and enables me to stay in a positive/energetic groove as much as possible. This made a huge difference to my ability to stay above the B.S. that life can often bring to our doorstep.

  On a much lighter note I am writing some theoretical 'stuff' about personal growth and development following terminal illness diagnosis, although the subject is 'heavy' there are some really enlightening and hopeful messages, observations and learning coming through. What amazing abilities life has to adapt, grow and re-invent - I may publish these at a later point.

Wishing all of you a great week on planet earth :)

Week + 19 : What's next...?

Finding meaning...

As this last week ended I certainly felt a sense of meaninglessness - not of having no purpose or hope, but of wonder; as to why I felt driven to 'keep on going' when the prognosis of this illness is so damning. I even felt robust enough to commit to some plans extending over the next few months, unusual , as I have been living very much day to day or week to week but not much further, giving me a future.....I had previously invoked a strategy of 'making it as far as 2016' but had no hopeful plan thereafter..... 

Hope is a behaviour/attitude not relevant to my situation.

What does one hold onto when there is no hope?
  Faith is my ally, spiritual not religious, faith in others to help me, faith in myself and my ability to accept this 'storm' and all that it brings, faith that everything will be ok and it will be what it is , no more no less. So I guess my faith is borne of acceptance.
  
  Why I struggle to walk in or interact with the world when it would be much easier to hibernate or withdraw? I think it is because I have an innate drive to make the most of my time on this jewel of a planet.

I do kind of waver between feeling ultra focused and an exhausted blob . At this time I am trying to find balance between rest , social engagement and useful activity - needless to say I've not quite got it right yet & due to the nature of this debilitating disease - it is kind of hard to judge ; even on a day to day basis.

  I've been reflecting a great deal about this & delayed approaching this weeks blog due to this factor.

It was Monday 11th when I woke to the news of the great David Bowie's death & I stop short this week 'blogging' as I take time to look back at the inspiring, affective and inspiring superstar.
Looking at his latest work , particularly Blackstar - the power of the imagery and bravery in his work is outstanding, in my view.

Week +18: 2016 - Happy New Year :-/

2016 the last ?

This year ....... mmm ...... how can I begin to think about a year ?

 A week maybe, a month at a push ... but a year? Listening (lots of) to all the plans, excitement and goals being set for 2016 led me to an empty feeling......
My personal goal is to survive and keep breathing (simple eh?), I wish it was that easy. The new way of living (for me) is requiring some major adjustment to my 'system'. Forward planning- gone , strategy - gone, replaced with living in the moment, 'coping' and 'managing'. I'm needing to start to lean on others for help and support, unnatural for me & taking some getting used to, but I've started... I am having to relearn how to live, with some difficulty. The fairly successful life toolkit I've used for the last 44 years now obsolete and replaced with a new version - simpler and more authentic, but taking some adapting to. 

  My biggest realisation over the new year period has been how much I have taken for granted in the past (health wise), I've been lucky and never had to visit the hospital or doctors for any health issues really; except the bug in the ear drama and some support with bereavement issues when mum died eight years ago.My previous good health replaced by this stumbling around and general mobility challenges (well masked in public).  Now, my health is in my mind 24/7 - from the moment I wake until the moment I drop off to sleep. I think the hardest part is the acceptance of the uncertainty of the journey ahead - other than it being difficult in nature, there is no plan, route or pattern just a destination.

  The enforced Christmas and New Year 'hibernation' ,for the last two weeks-whilst many of my networks have closed down, has prevented me from expending my energy where I like to most - in helping and supporting others, I've found this to be quite debilitating & it made an unbelievable difference emerging into the world once more this week as this awkward period has passed.....                     No time for excessive resting!!!

  I've asked for a structured session with the specialist clinic to help me understand the recent test results returned just before Christmas - this will help me make some important decisions for the start of this year and my ability to continue any self development work I have to attend to or to 'retire gracefully'. It feels that a lot rests on these conversations.

  New appointments commence this week - hydrotherapy imminent, more physiotherapy - hopefully helpful.

  Life at home is challenging right now for us all - so I'll leave the blog short this week & may return to it at some point....