Genetic Cancer + Cataplexy

It has been a very long time since I updated about the health gubbins and really it’s not very interesting.

In a nutshell:

• I was advised against getting Melanoma genetically tested
• Narcolepsy medications had damaging interactions with each other
• Cataplexy continues to develop!

Despite it all I fight on, because that’s what you do.

The Melanoma is a back burner again. Ok I went to Leeds to see the specialist genetic nurse and the end result was “Genetic codes can affect your ability to get life insurance”, which you need to buy a house … SO I had to weigh up the benefits of knowing if I do or don’t have a genetic posibility of giving the cancer to our children, against the ability to buy a house for our hypothetical children.

The Narc-Whale
The Narcolepsy is getting worrying. It was an inconvenience for sure, but right now it’s a pain in the jacksie. Cataplexy is becoming more evident, which in all honesty is good because it does validate that I do indeed have Narcolepsy, despite many folks trying to find their own reasoning for me passing out. The two drugs to control my sleepiness and passing out (cataplexy), together caused my blood pressure to spike at the start of the year. I couldn’t walk up stairs or even cycle without spiking in blood pressure.

Not only do I have the ability to feint in Tesco I’ve developed the uncanny ability to collapse if I feel “too much in love”, which really sucks because being love is a great thing. Love also floors me. On top of this, because this really is so much fun to live with (detect the sarcasm), I’ve had more episodes of not being able to move during a seizure (sleep paralysis).

I’m due to see my specialist in October and we all hope that he can see sense and start me on Sodium Oxybate.

Things will go right, they have to, I’m trying too hard to get back to normal for things to keep going wrong.

Getting Through It
I have no idea how, but I’m trying so very hard to have a normal life. To do all the things I should be doing. Woe-be-tide the Narc-Whale if it thinks it can stop me living my life, I’ve learnt to adapt to it and I’m gonna get on top of this. I just need that care plan to change at the hospital and a few things to go right.

Comments

1. Kelly Hebb says:

   August 7, 2012 at 03:20

   Hi Lee! I have a son who is 24 and has the “Narc-Whale” with cataplexy. My daughter-in-law is fantastic and so supportive (but she worries all the time). Just a little bit ago, he was really struggling. It seems some medicines work sometimes and then he has to change them again to feel “normal” again. I am so sorry things are so difficult for you right now. I do wish you some joy.
2. Mike Maynard says:

   August 7, 2012 at 16:13

   Hi Lee,

   Just poking around seeing what you’re doing. I clicked a link on the YamYam. Good luck with your struggle with health problems, it can be uphill, but we have to keep on going.
3. Lee Jordan says:

   August 9, 2012 at 15:40

   Hi, thank you for commenting.

   Yes it can be hard at times, I hope things get better. There’s a lack of awareness about Narcolepsy in the UK :(