Week +17 : Getting 'through it'.....

Thank God that's over......

 I've struggled over this Christmas period, hearing stories of what people are planning over the next year or so, their own lives and continuing adventures as mine seem to be coming to a sad premature end.... I was really so pleased to see everyone , but every one of these encounters (normal to others, but tinged with sadness for me) and their accounts, prodding me about my own slippery journey into disability and eventual demise....it's been tough, really tough.

  This Christmas, for me, has been all about struggle... struggling around the shops to try and get some gifts, struggling doing the food shopping, struggling to carry things from the car to the house, struggling to help with Christmas dinner , struggling to put the bloody socks on that Santa brought me -  the struggle frustrating and debilitating.....

  I thought some 'normal' activity might help.... a trip to the pub on Christmas eve!!!
(left me feeling less than useless, a seat had to be found whilst others able to stand and socialise ...I felt noticeably different to the others and struggled with this, once again reminders of this protracted death everywhere), hardly being able to walk out of the pub (not beer induced) but product of a long walk earlier ( around 200 yds )       :-(

Struggling requires energy, focus and desire.

I'm not liking the struggle this illness is bringing.

  A trip (literally), earlier in the day to the Boston 'Stump' -church did allow me some peaceful/tranquil reflective time; thinking of ALL alive or otherwise ,lighting a candle in their memory before gathering myself for the festive celebrations. Also asking for a prayer for myself to help me through the difficult time ahead. I found some clues for myself in this environment.

Peace - quiet - tranquillity - acceptance - hope - surrender

 
  As I sat watching my family on Christmas day opening presents and the usual activities that accompany my family Christmas I was left feeling empty, emotional and surplus to the situation, I have held this feeling throughout -  wanting others to enjoy their time (as normal).

  I hoped a visit to the coast on Boxing Day would help. A nice catch up with family - however,  a tantalising stroll on the beach too much for me to contemplate - again I became a bystander, so sad for me as it is my favourite place, a place of connectedness with raw nature, a great place to reflect, ruminate, plan and re-energise - I really need to find a way around these difficulties opting out of them all seems premature and would be quite damaging psychologically at this stage. Maybe selective and appropriately chosen will be the way forward.

  As Sunday evening approaches I've about had enough of sitting around inactive (I can do that anytime!) I'll be pleased when tomorrow comes and I can start getting back into some productive activity, study/ some work and helping a few people this week. I really miss interacting with like minded & connected souls..... hopefully this week will help start this re-connection as the world comes out of its seasonal pause. I've been doing anything to keep my mind stimulated but have felt obliged to enter into the customary loafing around watching TV and watching people on their variety of electronic devices. A revisit to some meditation and self-care has been a much needed resource for me to survive the last few days.
Who'd have thought a time of supposed giving and good wishes could bring such difficulty ???

I've decided to indulge myself in my Take That DVD from Santa as I write this blog this eve..... the big man has good taste !!

Below are a few thoughts that have 'kept me going' and focused ,so I thought I'd share them with you....

Happy New Year to you all:)

Week +16: Countdown to Christmas

Seasonal goodwill....

It's a strange experience for me this Christmas; where as I feel and see people apparently drawing together at this family focused time - for me the seasonal period is full of paradox.
 Drawing together at a time when I feel separate and different, excited anticipation versus my humble reflective thoughts. Sad, fun, happy, reflective, emotional, caring, kind, grumpy would sum up how I'm feeling ...
  Clearly it is a time where I feel it is difficult to enter the vibe of the masses and so I choose to spend some time individually with some special people I have been close to over the years. 
 

So a day spent in the coffee shops of Boston was the order of the day on Tuesday, with some great catch up time with friends with a little shopping in between, to show willing.
The quality time spent with these friends was so valuable to me, slowing down and engaging 100% with others, lovely times:)




  Much of the week was spent attempting to complete some academic work for my degree, I find it difficult to work on this stuff in large blocks so have needed to adjust my time and effort accordingly, not only the tiring aspect from the concentration required, but also the loss of dexterity and feeling in my hands causing some greater concentration to make things happen in the right order (particularly typing) making the whole exercise more difficult than it should/needs to be . Nearly there with this - so one more push should get it complete. I can then consult, reflect and work out the next steps regarding this program. 

  The end of the week was punctuated by two visits to the cinema to see the new Star Wars movie; impressive and good fun both from content and social aspects. (food n drinks before/after) . Great fun and great companionship from those I had the pleasure attending with.

 

The weekend brought a heart-warming and humbling local fund raising event that I managed to attend (in part). Wonderful people ; a community of caring, kind and inspiring people all joined together to support others in the Boston area. I truly felt a sense of 'giving to others' in the proper sense, not necessarily in a monetary sense, more from the giving of time and effort to support ease the pain of others   - got me feeling warm, fuzzy and Christmassy !!



On the health front, things are pretty stable at the moment and a visit to the GP on Monday helped organise some minor issues I've been having, and some great support in trying to help my short/medium term stability.
  A referral for some hydrotherapy and a different gym identified to help keep the legs working as long as possible and help alleviate some of the pain-this should start in the new year -so that feels progressive. Some other appointments scheduled for the new year also in place, so I'll be left alone pretty much until then - which is good for me, to have some 'normal time'.

  On Sunday I hit a bit of a bump with a copy of my recent clinic tests copied to me received in the post. It has some comforting observations of normality enclosed; in that my broad health and decline is fairly consistent and not got much worse than anticipated  (phew!) with the exception of motor skills/co-ordination (walking, balance and the other things I have noticed and described myself, previously).
There are some technical results I'd like to understand so I'll ask the experts sometime over the next week or so....


 ----------------It has been a week filled with textured and varied experiences-----------------


A couple of things have come into my awareness this week, seen at various points- and have stuck with me.....

 
'One day you'll be a memory for some people. Do your best to be a good one.'

'Courage is being scared to death but saddling up anyway.'

And finally:


'When something bad happens you have three choices:

1. let it define you
2. let it destroy you
3. let it strengthen you   '

I'm going for number three ;-)

 

Merry Christmas one and all.....

Week +15 :Hitting the 'psychological wall' followed by unconditional positive self regard.

The slow creeping sound of inevitability.....

This week started much as last week left off ..... with a seemingly insurmountable sense of hopelessness - beleaguered by a sense of 'the struggle isn't worth it, why bother' and generally feeling sorry for myself  .... I found myself in a dark, lonely place......isolated and scared of what the future holds.

'The wall' - possible to navigate ? round, over, through.....

A wall of inevitability stopped my proactive, positive 'ish' energy in it's tracks and this unusual state stayed with me until Wednesday........

I think the last few weeks caught up with me psychologically..... too much contact with this nasty disease/death and all of it's untimely baggage. I'd had the CJD meeting in Birmingham, various home visits all probing and prodding my certain fate and ending with my visit to London for a clinical assessment /tests......  

Now I reflect back on it - there's no wonder my 'tank had run near empty'. 

I really have had to lean on close family and friends over the last week or so to enable me to 'keep pushing on'  ....I'm so grateful for their support - I think I would have caved in if it was not for this. Never before have I needed this......thank you :)

Monday was a difficult meeting at home with three professionals looking at the feasibility of adapting my home to create more downstairs living space at the same time as creating a downstairs wet-room, planning ahead for when I can no longer get upstairs etc. Whilst this meeting was necessary for my future; in the here and now it was very difficult to contemplate these difficult times ahead - it was all so very real now. Budgets, payback, worthiness etc were discussed by all and is my case a priority when funding is tight and other people may be more of a priority. All very difficult to be part of both subjectively and objectively. I gained a sense of 'me' being discussed as a 'thing' rather than a person at times, a mightily jarring experience - especially as I hold every individual in such high regard, I felt somewhat devalued and 'missed'.
Until of course I decided to inject my honest opinion - pointed, strong but respectful and objective..... I hope the message got through to these planners, financiers. I must ensure the best possible end of life situation for myself, whilst maintaining as normal a home as possible for my family (my goal !)

Tuesday was a day of grey vagueness.....

Until the evening when I was feeling more purposeful as I began to pick up mood and pace wise.....starting to feel like re-engaging with life again.

This more positive energy seeped through into Wednesday with a very positive pro-active visit from my community physiotherapist - an assessment of my mobility resulted in a score of 50/56 - (good) I was told, even though the strength, balance and movement in my legs results in poor walking and poor sense of balance - there is good movement etc.
The problem being my legs seem strong enough to do 'stuff', however it is the messages from my brain to nerves/muscles that is failing resulting in this difficulty. Some exercises were given to me to do at home to enable me to help myself best I can. Also a referral for hydro-therapy (low resistance work in a pool)  much appreciated , to start ASAP and boost my mood further.

I still await commentary form my recent London clinic visit to benchmark my current health/situation/prognosis, I am happy I am able to engage with this news appropriately - keen to understand my cognitive function particularly, so I can plan the next couple of months ahead at least. Some tough necessary decisions/conversations need tobe made and had - so reflective thoughtful process commences.....

By the end of the week I find myself 'cleansed' of CJD related stuff and able to focus on more enjoyable matters- thinking about starting Christmas shopping/preparations :)
Some catch up time with friends, if a little different  from the usual - still possible.

A few social catch ups (nothing fancy) at the end of the week helped me detach the closeness of the prion disease a little more & able to take more interest in the world outside my own phenomenology.(dictionary?)

Looking forward to a better, more positive week ahead............ 

Week +14: Sadness and isolation brings about focus and determination.

A sad lonely weekend as I 'waited' for the new week to start and my scary appointment.
With little company or stimulation this weekend I found myself absorbed in thoughts regarding the prion disease - no doubt the imminent visit to the clinic/hospital causing me unease and internalised stress.
I tried session at the gym for an hour or so , but struggled physically & couldn't find the focus to really get into it , but stuck with it. The fatigue of an hour of gentle exercise really takes it out of my legs' ability to carry out the task they were designed to do. I'm feeling the gym work may have to stop as a swap for energy for general energy for mobility.
I'm keen to get the appointment out of the way and get back home on Wednesday so I can get focused on more vibrant and satisfying matters.

The cohort study proved to be challenging - as much in getting to the venue and around the hotel as the tests themselves:
A drive to London (me as passenger)was facilitated by a great service NSL ,manned by volunteers!!  whereby they drive patients from home to hospital & return, I had a two night stay in the hotel either side of a full day (9-7) full of tests , tests including various physical, cognitive and neurological and a full physical examination ...results TBA but some feedback was positive eg. regarding my cognitive ability, there is a clear physical decline that is affecting my passion for life.
The day built to a crescendo.....will a one hour full body length MRI scan - both uncomfortable and claustrophobic.  
I left the hospital having made the decision not to return again due to the strain, physically and otherwise - the intervention can continued to be supported as the team can come and visit me at home for a general assessment - seems like a more suitable option now.

Whilst in London I was able to catch some time with two of my children (now adult form!),as they came to see me...this made the trip less painful and certainly helped me in remembering my broader role as father and not just patient. I was thankful to see them both as their location and lives mean that we don't get much chance. They were both seemingly doing just great :) Proud and humbled by them both..... on their respective journey's.

Friday rounded off a 'prion disease focused' week with a lovely trip to local hospital to see my speech and language therapist- whilst there are some minor issues, we felt there will be no need to visit the dept. again until after Christmas, as I do not seem to be having too many issues here. Difficult questions posed by the therapist really made me think about the difficult experience ahead - not easy ... 

Positives >>>>>>>>>>>>>>>>>>>>>>>>>>>>

My next focus (goal) is to make it to see Star Wars VII, I have tickets in advance and find myself genuinely excited at the thought of a new instalment in this story, who said adults can't have fun !
I think I like the theory of these films - not just because of the literal story but the theory and depth behind the jedi ( of which I am clearly one).
Two weeks to go......  



Today (Saturday) I took great pleasure in meeting one of my good friends at a pottery studio where she creates wonderful one-off pieces, this gem of a place harbours great talent and work created by the group here. I was given the task of creating something from a lump of clay..... I had an admirable stab at this and was reminded how much pleasure and therapy I get from creative work. Unfortunately I forgot to take a picture .......
BIG THANKS :)   
Note to self to pick out as many of these sorts of activities as I can pottery seems another good one to add to the schedule.

Next week is a mixture of stuff for me some more (YAWN...) appointments to do with this disease and the impact it is having in several areas of my life (home adjustment plans, physiotherapy) ....

From a progressive viewpoint I am making an attempt at returning to work on some short voluntary shifts, hopeful of a more permanent go at things in the New Year while I still can (even if in a very limiting role) and a focused effort at writing an assignment for my degree course - something that with all the other distractions in my life I have been struggling to apply myself to.

We push on.........