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............