To give you a snapshot of life right now, it takes me a lot
longer to do things and I have much less ‘functioning’ time per day. Yesterday
I only managed to be out of bed at 7pm, today at 5pm. I am dislocating joints
more easily, especially in my neck, even with wearing my neck brace. It's not
easy constantly adjusting to how pain, increase in seizures, etc, is affecting
my day-to-day life. Some days my sight is too poor for me to check any of my
messages, or I am wiped out in bed with the terrible pressure in my head,
unable to function at all. Other days, like today, are mixed. I was rough and
in bed till 5pm but within an hour of being able to be up, I managed a walk
with Otty and then later in the evening was able to visit my church youth group
and say hi (they're busy fundraising for me). A few hours later and I was rough
again... It's a mixed bag and the ‘good’ hours I have are becoming more few and
far between, but I am very grateful for them. :)
