Sunday, 27 February 2011

Hypothalamus transplant... Anyone? Anyone?? Anyone???

An area of the forebrain which lies beneath the thalamus. It secretes corticotropin releasing hormone, which helps to control the body's metabolism by exerting an influence on the pituitary gland, and vasopressin, which is involved in the regulation of the sleep and wake states.


As I’m writing this from the comfort of my duvet-covered settee, due to suffering the familiar effects of insufficient sleep the previous night, it seems appropriate that this particular blog entry be a sleepy one. However, those of you more interested in reading about my experiences and opinions with a more earthly slant then fear not, some wildlife-filled witterings will follow shortly - presuming of course, that the need to sleep hasn’t got the better of me before I manage to put fingers to keyboard, which is only a matter of time (minutes rather than hours, if experience is anything to go by!).

An oft-discussed subject amongst my beautiful sleepy friends is whether or not to tell people about having Narcolepsy, and then if appropriate, also the matter of how to go about telling people about having Narcolepsy. These days I’m all for sharing. For a start, the ‘classic’ depictions of Narcolepsy (you must know the ones) do not do the disease justice in any way whatsoever. Please don’t take this the wrong way but I simply do not have the energy to go into the ‘why’s’ and ‘how’s’ but if you make the effort, it’s not hard to work these out for yourself.

Now, some of you have already been regaled by the following recollection of a particularly bad day I had recently, so for those to whom this applies, apologies for the repetition. However, I thought I’d share it here, in the hope that it might help to convey some of the really crappy effects of Narcolepsy – as opposed to the generally crappy effects…

So, for the past few years I seem to have taken to telling anyone and everyone about Narcolepsy! It’s not necessarily a conscious thing - it just tends to slip out. I don’t always go into the same levels of detail, and I do have a tendency to lighten some of my experiences with people with whom I’m not that familiar but on the whole ‘spreading the word’ has been a positive experience. Most of my friends have come up trumps and are genuinely interested in the subject, and knowing that they’re even a little bit aware of what I go through helps to alleviate some of the stress that accompanies ‘being different’. Mind you, saying that, I’ve given up on talking to my family (i.e. my immediate family outside of my lovely Other Half and the Small Person) about it, as they simply show no interest and seem only intent on sharing all their own problems with me but here isn’t the place to go into that, and I’ve accepted that that’s the way it’s going to be for us, so in many ways, it seems to work!

I also seem to be pretty adept at appearing relatively normal (not necessarily a good thing, as people tend to assume that everything’s OK), so I’m rarely in a situation where I have to attempt to explain my behaviour/symptoms to complete strangers. My cataplexy is rarely severe enough to cause total collapse, and I’ve learned coping mechanisms to help minimise the impact that it does have, such as locking my knees whilst walking/standing, clinging extra tightly to railings, avoiding standing for too long, etc. Also, as I’m more-or-less my own boss when it comes to when/how I work, I can normally avoid having to be out and about when I’m feeling extra-rough, and wherever possible, I do try to operate within my limitations, which includes avoiding known triggers, etc.

Saying that though, one day last week I did make the mistake of going into university after only five hours sleep plus an hour on the settee after breakfast. Boy, did I feel awful – numb brain, head spinning, sweaty and shaky, legs wobbling – in the end, I left the office early and forced myself to walk around (aka stagger about in a fog) the campus until my lovely Other Half arrived to take me home. I desperately tried to find something on which to focus (in this case, birds!), and also to keep moving, as every time I stopped, I could feel myself zoning out even further.

We only have the one mobile phone, so I was unable to get hold of my lovely Other Half to request an early pick-up; however, the one comfort was that I didn’t have to get the bus, as I really don’t think I could’ve coped with that, and goodness know where I’d have ended up! Fortunately my chauffeur was on time, and I collapsed into the car, whereupon I vehemently cursed having Narcolepsy before finally allowing my eyes to close. I was in bed by 9pm, and the next day was a far more enjoyable experience – I even survived 3 hours in a biology lab assisting undergraduates with population modelling on Excel (came away feeling brain-dead though…)!

Talking of assisting undergraduates, in a couple of weeks’ time, I have two lab sessions in one day (more Excel-based analysis): 9-12 and 3-6, which I am not looking forward to one little bit – think I might take in a blanket and find somewhere snug where I can curl up and snooze for a while, although napping tends to turn me into even more of a zombie… Oh well, here’s hoping I’ll come out of it relatively unscathed!

Update – I survived! I made it through the day in one piece. However, by the time I arrived home, I was majorly pooped, and promptly curled up on the settee for a spot of premature shut-eye.

So, where was I, or rather, where am I? Oh yes, prostrate on the settee, wrapped in a duvet (but still cold – silly hypothalamus), trying to remain suitably compos mentis to adequately function zzzzzzzzzzzzzzzzz. Oh well, such is (my) life, eh?


  1. Absolutely. I find whatever musings I share with those non-narcs around me fall on friendly ears, sink in deep, but fly away out the other ear. It's as if the words are super slick and slide through like some amusement park ride. I'm not sure why folks cannot connect with us or that they cannot relate some experience in their own lives with ours, but alas and alack, they cannot. So, like you I politely inform and educate, hope for the best, but live in reality, and then I turn to my online narcoleptic family who all "get" me. My relationships with these folks become even more precious and necessary to my life and through them, I can go on scattering seeds of knowledge, realizing that infertile ground will never germinate the crop.

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