Today has not been a good day.

I woke up and came down stairs, within ten minutes I had bilateral ptosis (both eye lids drooping so that they are shut.) I took mestinon and within 30mins it had resolved. I was still feeling pretty weak so I just sat around on the sofa.

My vision has been a bit wonky today resulting in several things being knocked over. Its so frustrating. I know “normal” people knock things over but they dont do this on a daily basis and over and over again.

At 1230pm hubs and I were having some lunch and my eyes started to jerk around in my head. We were watching “america’s next top model”, we love it and have followed every season so far. Its cycle 13 here. I didn’t last through the programme, first the right eye shut and then the left one started to join in. Combined with the nystagmus there was nothing else left to do but go to bed. I had only taken a mestinon just over an hour before hand but at the moment its not lasting very long. I took another mestinon when I got upstairs and crawled into bed.

I hate being in bed my immediate reaction is to fight against it. I start thinking about moving my bed. Physically impossible for me but the idea plays on my mind. Once an idea is there its very difficult for me to shake off. Theres washing to be done and has hubs changed the load over? This starts to gnaw away at me. I try and block those thoughts out. Luckily the radio catches my attention its a Sherlock Holmes story “the crooked man”. I haven’t heard it before and soon the scenes are playing out in my mind as the words are being spoken.

The next thing I know its 1445 Ive been asleep for an hour and I feel rested. Both eyes will open.

I just wonder how long I have to be in this state before someone will start treating me. The post has been and gone and there is still no news on my blood test results. Its been 5 weeks tomorrow.