Yes, it’s my birthday tomorrow! I plan on taking it easy in preparation for my jam packed evening. Going to see a band called The Brian Jonestown Massacre then on to a live surf music night, so I need to conserve as much energy as possible during the day. Will let you know how it all goes in a few days, after I’ve spent most of time recovering in bed! I find it okay staying out late every once in a while but can’t handle late nights too often. I pay for it in sleep the next day.
I’ve got a few updates:
– I’ve finally got an appointment with a neurologist who specialises in Narcolepsy and Cataplexy at a hospital much closer to where I live. No surprise when they told me the earliest appointment was end of September! They’ve had a cancellation so now have an appointment end of July which is so much better. I’ve been going through the whole referral process from one hospital to another since January and somehow I managed to slip through a gap so it was only last week I was put on their system. Hoping to get my meds sorted pronto before my Cataplexy gets any worse. The Venlafaxine that I take has absolutely no effect on my C but gives me nasty side effects especially when increasing/decreasing dosage or if I forget to take it one day. I was reminded of this recently when I ran out of pills and couldn’t get more for 3 days. The first day was fine, minor trembly hands but nothing else. Day 2 I felt spaced out, dizzy, queasy, headaches, teeth chattering with intermitted jaw clenching and general body shakes which worsened as the day progressed. Oh and not forgetting the rapid onset of cold sweats, shakes and itchiness together with the feeling of wanting to take your own skin off. Tears were streaming uncontrollably down my face. I don’t know if it was out of stress, frustration or something but I didn’t feel like there was anything to cry about at the time. It’s a feeling of total discomfort and almost unbearable not being able to do anything about it. I don’t even know what I should do in that situation – I was sipping on cold ginger beer as ginger helps settle an uneasy stomach but other than that, I just rode it out for a few hours. I was able to start the pills the next afternoon. I took a half does to ease back into it. I feel about back to normal now but still want to get off these drugs because I’m not getting anything beneficial out of them, only bad stuff.
– I had a wonderfully productive day yesterday or the day before (well, productive for me anyway). I collected my medicine, folded and put away clean laundry, made a hospital appointment and defrosted my freezer! In between each of these tasks there was of course the inevitable napping but I still managed to get things done.
– My ESA has come through and thankfully backdated to March. I celebrated this moment by paying the water bill! Woo Hoo!