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.