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 :)

Week +23 : and relax....... 'ish'

An intensive week left me with a sense of much needed relaxation at the end of the week....

  A painful but necessary meeting at the start of the week discussing critical adaptation/ building works at home to provide a suitable end of life environment took place. The emotional and highly charged meeting, appeared at first to be subject of obstruction and reasons why it couldn't be done or proposed 'cost effective' short cuts suggested. In the end though, it seemed the hearts and minds of the organisations/stakeholders were on board and engaged with this. So we wait for the next step to form, planning, building works etc.
The plan is to construct a downstairs wet room and living 'quarters' that can be adapted to a more hospitalised environment when the time comes.I am hopeful that this can happen - in time..... After my death, this can then be used as an additional reception room or similar by my family, so practical in the longer term too.

  I had a couple of clinical appointments this week ; one of which disturbed me somewhat - a fitting for a leg brace to prevent my knees from 'locking out' or hyper extending the leg brace supplied by the NHS (with good intention) really does not seem practical or helpful. I've been asked to try it for a couple of months and then review - but after a few hours I really feel it is not the right solution for me at this time.

It looks very much like this.......

 In the whole process regarding this leg brace - I feel 'missed' and the professionals have not really taken my needs/self into consideration. I am noticing this a lot; that the best professionals related to my care are the ones who truly engage and listen and do not treat me like 'the next case' or they are just doing their job and not seeing the person (me!).... I do gently remind them of this - in my own subtle manner.




  Much of my spare time this week has been a focusing exercise on a seminar I have been writing/preparing for some time - I really had  a sense of risk in the delivery of this, as I was putting some seriously personal stuff 'out there', I did ask myself on several occasions why do it?, but settled on the fact there is too much learning to be gained from my situation not to share some of it - it may benefit others in some way? An interesting phenomenological experiment if nothing else....in the end the content seemed to be received and created some interesting reflections and thought s from my peers. Also, I would add the experience has enriched my sense of self as a counsellor/therapist - facilitated a deeper sense of meaning, if you will. 

 Next week sees a return to my University study program - something I had not thought would happen, when adjusting to my unfortunate situation last September I had figured I would have to withdraw from this much sooner - but as things stand; barring my difficulty walking and some slurring of speech when tired, I seem to be doing ok and still able to work well with this vocational experience. In fact I seem to be doing better than ever, finding new ways to connect with this stuff - driving some real energy and focus.

  I did have a worrying episode on Wednesday, which I won't detail here, but I put this down to three things 1) over doing things and forgetting my illness   2)not eating correctly on the day  3) allowing stress and frustration to creep back into my otherwise well structured  maintained life. My body reminding me to be kind to myself and take it easy when possible - to maintain focus and energy when needed.

  A new tattoo number 11 was the thing of much focus and strangely attractive pain on Wednesday morning - covering up my 1st tattoo and developing some symbolic stuff I've had done previously - really happy and impressed with the tattoo and the tattooist who completed it for me .   

 I am enjoying the new mobility car and this is making my life easier and I am enjoying driving again-for now. A simpler vehicle and more appropriate for my situation - this is just one of the key supports that has enriched and made things that little bit more tolerable :)

It's one of these...... same colour and spec .....

 

Looking forward to a reasonably relaxing weekend and a more settled month ahead :)

 

Take care out there in the wide world. . . . .

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 :)