Confused? Join the rest of us

It would appear that my narcolepsy has no simple solution. Although the symptom can occur after radiotherapy it usually happens much sooner. Nobody has an answer to hand. The drug I mentioned in a previous post is probably not an option because, as Charles pointed out, it can be responsible for seizures itself, which is obviously something I do not want to happen. It may also not be freely available for prescription. This is what my doctor told me when she phoned me yesterday evening. Apparently you need a special licence or something to be able to prescribe this. It's all rather a shame, really, as it did seem to offer all the solutions I was looking for.

The other option that's being considered is some form of sleep treatment. That perhaps my breathing during sleep time is not going on properly. So I may be referred to a sleep specialist! Well, I've not seen one of those before and I don't know what it'll involve. I've got my jury duty in 3 weeks so I hope the two fit together properly!

Speed is the word, is the word...

My narcolepsy seems to be getting more frequent. The trouble is that as it starts to kick in, I start to feel a pleasant relaxing wave wander along my body.The attacks themselves vary slightly. Sometimes I can feel it hovering around me and it just takes over, and other times I can just relax and allow it to take over. But in the latter case I know I should take more control. But it's very difficult.

Drug Seekers

My sleep problems do not seem to be improving. For example, even when I think I've had sufficient sleep overnight I'm still having sleep attacks when I'm sitting in the office. Previously I could almost say that the sleepiness occurred in the afternoon and while this wasn't quite right, it was also quite common amongst people generally.

But now my falling asleep syndrome has started in the morning. I will come into the office feeling wide awake and fine and then an hour or so later I start nodding off in front of my screen. I went to the doctor today but she didn't have any helpful solutions. Admittedly, she was a locum and so didn't know my past but even when I tried to bring her up to date there was only so much I could do.

Anyway - we had no solution. She basically suggested that I should wait until I see my neuro (Andy) in late November, when I have my next MRI scan. But that's no good for me. So I've started some searching and I think I've come across a drug that may be the solution. I won't name it yet, but if I manage to get prescribed some, and it does what the various write-ups about it claim, I shall be a very happy person and I will spread the news. In the meantime, fingers crossed.

Tired?

Although you shouldn't notice this, I may fall asleep in the middle of this post. Please excuse me; it's nothing personal. It just seems to be a side effect that has started kicking in and becoming more noticeable. Although I think the term "narcolepsy" sounds a little too serious for how I am affected, I seem to share a number of symptoms. My sleep pattern is certainly up in the air at the moment. I've been awake, on and off, since 2:45am today, for example, which is certainly not my usual sleeping pattern. Similarly, I have found myself drifting off to sleep in the afternoons, sometimes while sitting at my desk in the office! It happens completely accidentally and when I do sleep, I'm still sitting up; I don't flop over my PC or anything - my back stays straight. It happens completely beyond my control and luckily I don't start snoring!

I'm seeing my neuro soon, so I shall discuss this with him. Apart from that, I feel great!

Have I told you this before?

Yes, the title is deliberately ironic. Hopefully you will have noticed that my blog postings have generally been very positive and I don't whinge very often. Tonight I am going to whinge, so feel free to skip this post and wait for the next dynamic and exciting... no, I'm not fooling anyone, am I? Well, okay, the next honest and truthful story of my experiences.

But back to what the title of this posting refers to: Short-term memory problems. My memory never was particularly good, but it's noticeably worse. I am trying to counter it by writing things down more, or to confirm whatever someone may have said in email, but it's not a perfect way of remembering things. For a start, trying to recall whether you wrote something down or not can be a challenge - and then where you wrote it down is a complete puzzle. I know. I've been there.

The trouble is, not everyone understands your problem. Not all of them are malicious about this, but some just cannot relate to the problem. I have found that some people seem to think (subconsciously) that you have deliberately forgotten information they have given you, or that you're just plain stupid. I would love to point out to them that it would make my life a lot more comfortable and happier if I could remember everything. That I am jealous for their recalling abilities.

Now I have a lot more fun. I have a digital voice recorder (a 'dictaphone') which I pull out at meetings, explaining that I have a poor memory but don't want to slow the meeting down by having to write everything down. It's amazing how much more understanding they become, and how much more calmly they approach the content of the meeting. And how quiet the meeting becomes, generally...

Fame at last!

This blog has been mentioned in a website! Actually, better than that, it's a cancer charity site (http://brainstrust.org.uk/). Do go and have a look - there's lots to see and some very worthy aims too. I'm meeting the founder of the organisation this week and I'm really looking forward to it. I'm hoping that I'll be able to provide some help in some way or other. I found the organisation after reading an article in ThisIsLondon about a girl with brain cancer who was/is going to have her benefits reduced considerably: http://tinyurl.com/lze94n. The story in the article is terrible and is well worth reading. The irony of the decisions made by the agency, as far as I can tell, is that she looks okay to work - and this may be true. But that doesn't mean she's going to find a new job easily - if at all. That's me above, there, and as you can see (I hope!) I don't look ill - quite the opposite - but as you'll know if you've been reading this blog, I've got brain cancer too. I'm fortunate enough to be employed at the moment so I haven't had to worry about benefits and I'm very glad that I don't have to. I'm not sure what a potential employer would think about things if I told him what my current condition is.

So Lisa, the lady in the article, has my complete support and I just wish I could help her in some way.

I've had lots of complaints

...Apparently I'm letting my huge fan base down because I haven't posted recently. Anyway, there's not that much to report, which is good. I feel fine, I've not had a seizure for a while now, which is great, I'm back at work, which is beneficial, and at the moment, Andy has decided that I don't need more MRI scans until November, which is really good.

On the down side, I do have two irritating side-effects. The first is my memory. It was never good, even at the best of times, but it's really embarrassing at times now. I've taken to carrying a notebook and pen or a little voice recorder or other things so that I can record what I discussed with someone else and note it down somewhere. It has saved me a lot of trouble.

The other side-effect is my sleep pattern. It's still being less than perfect most of the time and I find I'm waking every hour or less during the night. This is usually after midnight but is most disturbing as it can take me some time to get back to sleep again. What's worse is that I find I'm nodding off in the office in the afternoon! It's just as well I'm not operating lethal machinery...

I'm going to seek advice from Andy or Charlie about this.