Wednesday, 22 March 2017

Narcolepsy

Well I'm not going to to run out of things to write about anytime soon!

Narcolepsy is the latest thing to give me trouble. We went out for lunch on Sunday as an early Mothers Day treat and I almost face planted my lunch. A coat on the table meant I could have a nap while eating. There's no choosing when I sleep, it's when my body allows me to stay awake.

Yesterday I fell backwards into the bath. Chris had left me sitting on the side and as he turned round to get a towel I fell backwards into the empty bath. Legs dangling and arms flailing he picked me up and put me back in place. It's a good job he's there.

I've had more falls than I can count this week. I've had a bad cold which made me worse and quite weak.

This Sunday is wear purple day for Epilepsy so I will be wearing purple to support my fellow epilepsy fighters!

For more information about epilepsy, go to www.epilepsysociety.org.uk

If you would like to talk to someone about epilepsy, call our confidential helpline for information and emotional support.

Epilepsy Society Helpline 01494 601 400 Mon and Tues 9am-4.30pm, Wed 9am-7.30pm

Monday, 13 March 2017

Gerald

Gerald is my new alter ego. I haven't been shouting much recently because the medication I'm on is working really well but when i do shout it's brutal. My voice changes to much deeper level and my language is appalling so we've named him Gerald and given him a whole story. He's an old man who lives by himself, has no family or friends and sits at the end of the bar in the pub swearing at people! Some examples of Gerald's work "F off" "F...ing men" "Guess Who" (that was because Emily had left her Guess Who game out). Of course "Cock" came out a lot. Gerald likes to say that a lot. Poor Chris was terrified. The highlight was when Chris asked me where his toothpaste was and I answered in my normal voice "I don't...." and then Gerald stepped in "...f'ing know" Chris just doesn't know who he's going to get!

As a non sweary person normally it's very hard to violently swear at people and I find it mortifying. Thankfully it only happens occasionally these days and Gerald stay away. If you hear me swearing you know Gerald is back!




Thursday, 9 March 2017

More News

I've had a an exciting week with my article being published by the Epilepsy Society. Writing keeps me sane when I can't get out and about.

I saw the consultant on Tuesday and I have been diagnosed with....deep breath...epilepsy, narcolepsy, cataplexy, tourettes and possibly postural orthostatic tachycardia syndrome! Not much then! He believes at some point in my life I had an infection which affected the membranes around the brain cells. This caused the cells to misfire and the result is all this crazy action in my brain. It's a lot to take in but now we can treat the symptoms. I always suspected I had a misfiring brain! Now we can crack on with treating it.

Thanks to everyone who shared my article yesterday. It feels great to know I can do some good while being stuck at home. I really appreciate your lovely comments too so a big thank you xx

Saturday, 4 March 2017

Falling Downstairs

Last week James definitely...probably...possibly saved my life. Normally I go up and downstairs on my bum but I was chatting to James and got distracted. I didn't realise I was standing at the top of the stairs. I started to wobble and next thing I knew I was falling down. Thanks to some quick thinking from James he grabbed my hood and bumped me slowly down the stairs one by one. I was battered and bruised but it could have been so much worse.

Today I've been to see my neurologist. I start more medication next week as it's clear the one i started last year isn't working. Fingers crossed this is the one for me and i can get back to normal. The good news is the medication I started at Christmas has calmed my tics and jerks so at least something is working!

I've got a new facebook page for this blog which you can find here. My lovely hubby has even made me a logo for it.

Finally watch out next week for something special for International Women's Day :)