Week +13: Feeling stoic

Hard work.....

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 :)

Week +12 : Facing the future

 

This week has tested my strength, resilience, hope, faith and sense of self massively ............. forced to focus on my ever decreasing life cycle.

Appointments with many support professionals (seven in all) at various points in the week, varying from advance care plans to hospice intervention/type/needs to physiotherapy. Often requiring me to focus on the long term difficulties I face, (which I appreciate I will) but I'd rather do it in my own time and at a 'convenient' time, not these 'enforced' questions and answers..... " so do you think you will have a bed in your living room when you can no longer get upstairs" or " have you thought about moving?" - away from my family to a hospice ?? or perhaps "you could move to a bungalow away from your family" " would you like to die at home or in a hospice?"

All of which explorative questions I am sure meant with good intention...... but shattering to the individual on the receiving end (me).
Further questions probed at physicality and symptoms - I'm more than aware of where my issues are and do not feel the conversations are helpful to me in retaining my positive, robust approach to life.
These conversations are necessary for the future planning and immediate organising of relevant help, but still equally painful to have. My process dictates I'll talk about this in the new year once I've been able to enjoy my last coherent Christmas/New Year. 

I did however, feel great strength and energy from the physiotherapists advice/support and guidance - some useful exercises developed and a very caring/supportive nature.
I was pleased to end the week with this - it has renewed my focus and determination. 

I was thankful mid-week for a treat ..... my cousin had arranged a day at the local health spa
in Belton Woods....

 - so thankful for this ..... a swim, steam room, massage (expertly done) and a pint of Guiness such a welcome respite from the upsetting and challenging events of the week. Helping gain some momentum for the end of the week.... and of great benefit to my aching body :)

 

The end of the week ; - a trip to Birmingham to the 20th family day for the CJD Support Network - massively relevant and suitable to my illness.

I met several old faces and some new - all with various relationships to this illness- it was a difficult time but engaging and necessary for me at this time. I was really touched by one 'story' of a family dealing with this illness themselves; I found myself humbled and thankful for my own situation - although mine is difficult ,certainly not as painful as the one described to us. Heartfelt best wishes go to these people.....

One presentation touched on a therapy that has been developed to treat this disease, however the £13million funding need prevents the drug being trialled further for my particular situation at the moment.

It is hopeful though, that it appears this may be available for others in the next ten years or so, I was pleased to hear that it may help others ..... but sadly not in time for me :-/

 

This week I'm more able to leave the horrible week last week behind and focus on a few hours back at work and get into writing my assignment for my degree course without too much distraction - lets see how we go :)  

 

Having read this blog back myself it sounds sad ..... I'm sad, yes of course, but full of energy, zest for life and focused on supporting others at the moment, so I don't dwell on these things and am quick to move on - there will be plenty of time for upset later , but for now there is much to be done .....

 

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As I close this week:
I'm reminded this week of my intention not to be defined by this illness and found this post on facebook relevant and energising :)

 



 

Here's some other affirmations/quotes that have caught my eye and emotion this week.....

 

Week + 11 : Deep breaths

Deep breaths.....

This week I felt fatigue on a grand scale towards the end of the week. A busy week had taken it's toll as I felt exhausted and needed some down time. Having completed my first block of study for the final year of my degree I felt a sense of achievement, but also left wondering if I'll be healthy enough to make the next 'leg' due to commence in Feb 2016;I consider the only way to find out is to keep going and find out at that point.
That's the difficulty with this illness, knowing what the prognosis, symptoms and outcomes will be, but never sure when each decline will occur.

I know I mention my walking a lot, possibly due to the fact that once I cannot, I feel my sense of self will be affected massively. My legs and hips are causing me a lot of pain and I hope to discuss this when I visit the specialist clinic at the end of the month. In the mean time I'll do my best to get around 'acceptably'.     :(

This week brings several appointments related to the prion illness, a capability assessment at home on Monday, a occupational health visit, a first visit to a local hospice to discuss care requirements/support/service offer and finally a visit from the community physiotherapist - the latter I am hopeful will bring some helpful routine/exercise suggestions to aid my mobility. I am happy to work hard at this to help maintain strength, mobility and ability as long as possible.

A strange melancholic feeling washed over me on Friday - perhaps stimulated by seeing and hearing about others out enjoying life, while I feel restricted by this damn illness, too tired and agitated by painful sensation to join in . I have to pick my times carefully to do these things and even then unpredictability with ability/capability can influence these plans. I reflected on this a great deal this weekend and have to find acceptance with my restrictions and choose carefully where and how to invest my energies. Acceptance and admitting defeat are important at this time....

Finally, I couldn't end this week without reference to the awful events in Paris and the horror that unfolded for these unfortunate people affected by such cowardly, shameful acts.....my heart and prayers go out to the victims and the community there and around the world; these atrocities always seem to bring us closer for a time and then people drift back into normal everyday stuff - let's hope we all remain strong and this evil force can be neutralised.

Best wishes to everyone .... hope you have a good week.

Week +10 : Stability and refocusing

Transfiguration

 

A busy week ends & I have found myself able to re-connect with 'normality' much better as the immediacy of my illness and the prescribed death seems a much more 'soft subject' as I am finding great peace and acceptance with my unfortunate situation.

I am filled with an energy and zest to carry on doing as much as I can while I can, to do good and have a positive place in this world. This 'energy' is driving me forward in a number of areas & I hope to return to paid work shortly (physicality permitted).

This week saw a return to the gym after a couple of weeks away as I was finding it difficult - however, I  have adapted my approach and this seems to be better - gentler and now not wearing out my limited walking capability so much. 

A catch up with a very kind and precious gentleman on Tuesday was a wonderful re-connection with a previous relationship for me; but someone who brings great comfort and kindness for me. A brave soul who has reached out and offered a hand of support at this challenging time - so powerful and valued ... 

At the end of the week I have had the privilege of attending a retreat at Ampleforth Abbey, entitled 'Living well, dying well' and whilst some pain was found in reflecting about my own situation, there were some truly inspiring and comforting moments to be found. The retreat is advertised as : 

'This retreat will focus on aspects of death, not so much for those who grieve, but for those of us who wish to follow an invitation to always have death before our eyes. This is not a morbid thought but a reminder that how we live each day will reflect how we will face our final day when it comes. It is a retreat about hope and the celebration of life (edited)

 

I had my cousin as a companion there, which was a new experience, as I have always attended alone previously. It was great to have a psychologically connected companion and we spent good times playing board games, eating locally, sampling goods produced at Ampleforth, reading and sharing thoughts/ideas. No TV/ Wi Fi but more valuable conversation, human connection and laughs along the way :)

Walking was very difficult for me in this hilly location,  directing me to think more about using acceptable aids to assist my mobility - not 'giving in' , but accepting that struggling is not much longer the best strategy when simple help hangs in the hallway in the shape of a kindly presented 'modern' walking stick. I am hopeful a meeting with the community physiotherapist next week will help me maximise my wasting legs.

I use the term transfiguration in my blog this week not in its biblical context, but as a symbol of a 'marked change in form or appearance'. I feel the experience I am having in dying is organismic, releasing and  refocusing my energy/priority enabling me to place my energy into a more engaged way of being, more interested than ever in the human potential and fascination with what makes us what we are.... guiding me into more helping relationships and evermore emotionally available for others.

Faith plays a key part in my current process; not worrying about what lies ahead , but that I will have the strength of body and mind to cope ,with the support of close friends/family/professionals and my community. Faith that when the time comes I will know what to do & be guided accordingly instinctively and spiritually.

Some keynotes from this weeks retreat are detailed below:
Non religious observers may wish to look away now! however there were some deeply resonating spiritual messages within the religious context for me - observed as common and not unusual to the individual but part of the human condition ;

• Courage is not absent of fear, that is denial.
• Fear is a natural human emotion
• When the moment of suffering comes, a surrender is require, a leap of faith....
• There is nothing like suffering to make one feel lonely and isolated
• People are desperate to find a way out of their situation
• Better to live in and appreciate today rather than worry about the past or future
• How do we reach out to others for support when we need it, some challenges cannot be faced alone
• Helping others also helps us to receive support
• Where you are; do what you can
• Do we have the eyes to seethe divine in others, nature and the world around us or just 'passengers'
• Look anywhere but find true love and peace within
• Live life to the full, have faith and death holds no fear for us.
• Love is stronger than death
• How can I live it? ..........  one day, one moment at a time

One final thought from the retreat that really stuck with me; ' letting go of the things you can no longer do and embracing with all that energy permits what you can now do'.....

I hope you enjoy living your week......I fully intend to :)

 

 

 

Week +9 : Moving on....

Moving on....

This week I finally felt I was able to make some sense of things and start to feel more positive about the future.

Most of the initial appointments with my team of professionals (involved in supporting my short and long term needs) have taken place and I now understand what help is available and how this can be tailored to me at each stage of the illness.

I hope to return to work a few days a week, while I still can - once the remaining appointments I have are completed and I gather up my strength, motivation and spirit for another go at life.

While I can - I am certain I still have a great deal of positive energy for the world before I have to retreat to a 'smaller place'. This energy propels me to do more & help support others where possible - I don't feel ready to give in to this disease yet. 

I am thankful that the only support I seem to need right now is physiotherapy to help maintain leg strength while I am still able to walk ...as I've noted before my leg strength is severely degenerated as is my muscle bulk - I am determined to make Christmas without giving into the pain and difficulty I have walking etc. Cycling and exercise is helping but equally tiring. I have to remain mindful that fatigue is a big part of this illness for me at the moment and rest/recuperation is vital. 

Emotional support comes from close friends and family (some) who have engaged with me in this journey and are helping in any way that seems appropriate.  My heartfelt thanks are with my cousin who does a great deal to support me :)

This week brought confirmation of a blue badge (disabled driver) which should make the accessibility easier for me, whilst I am still driving. I think I will be due a drivers assessment soon & this will determine driving skill/ability/safety.... I'm hopeful it will be ok as my driving seems ok - to me :)

My studies for my degree are focused on a comparative study of approaches to counselling and psychotherapy - I'm drawn to existentialism as this has formed part of my life for several years now - I am finding the discipline of self- study difficult with all the challenges I have had recently, however with this new more positive vibe I am feeling from within , I feel I will be able to approach this with more vigour now. Lets hope so - it's soon assignment writing time :-/

Anyway, the week ahead brings a mixture of activity from study to a retreat in Yorkshire where I will be reflecting on living and dying; in a group facilitated by the monastery there - a peaceful and welcome space for me to think about the future....