helen-louise's journal

Last night I went out for curry and ice cream in a clean t-shirt. And then proceeded not to spill any of it over myself. Who am I, and what have I done with h-l?!

The evening also featured a visiting brooksmoses. It was lovely to see him, just as it was to see epi_lj and clawfoot in May. If any more friends from the other side of the Pond have a burning urge to visit London, do come and see me :) I am under the impression that there is some big science fiction convention going on in a few weeks, so if any of you are coming over for that, do let me know...

I have been trying to sleep since 6.30 am and it is now 10.30 am. Conclusion: My sleep patterns are fubared. And yes, I meant "fubar" and not "fiber", thank you spillchucker. I have Plans for seeking medical attention, but it occurs to me that I shouldn't go running to my GP flailing about the state of my brain before I've done everything I agreed to do/have checked out from my last visit. So I have to go and see - or at least arrange appointments with - some other medical professionals first. Waah.

You know what makes me really fuckin' angry? People who boast that they don't take any medications that are made in a lab. As I said to one of these loons today, you have no idea how lucky you are to have the CHOICE not to take prescription drugs. I personally have the choice of taking prescription drugs or dying.

I was explaining to some people who don't know me well about the delights of chronotherapy, and why today I got up at 2 am and will remain up until at least 2 pm. And said people were trying to convince me that I should try drinking alcohol or smoking pot for my sleep problems. Because, yeah, that's a bloody great idea for someone on several medications which say not to mix it with alcohol, and who as a result of chronic fatigue syndrome has no tolerance for it at all (as in a few sips of something alcoholic puts me under the table and feeling awful). And who is extremely asthmatic and starts retching and puking when even vaguely near pot smoke.

Oh yeah, and apparently "weed won't cause variable effects with other medications". I'm on carbamazepine, which is a cytochrome P450 inducer, and that is affected by somewhere between half and two-thirds of all other medications, including natural remedies. The chemicals in pot, of which there are many, could make me need to increase or decrease the dosage of any or all of my meds. If I could find academic papers stating which particular biochemical pathways are affected by it, then I might consider it. But the fact it's illegal means there is insufficient information about drug interactions. The other problem with it being illegal is you can never be certain what dose you're getting. I prefer drugs where the dosage is known.

*stab stab stab*

In other news, I have a new wheelchair. It's a new-to-me wheelchair rather than new. It was made in 1998. However, it is built like a fricking TANK. It is higher off the ground than my old one, "for a more important appearance on the road"(*) and also very, very red. I'll link you to the eBay auction for now because I lack spoons to take my own photos. There's also more pictures in this brochure, although mine doesn't have the riser or tilt functions, not least of all because I don't need them.

(*) Engrish phrase from the Di Biasi tricycle catalogue, circa 5 years ago.

Life's been a bit difficult lately.

I have screwed up my left leg in an impressive manner. I keep stretching my legs while still mostly unconscious, and somehow OVERstretching my left leg and waking up screaming. My thigh has been numb for weeks and sometimes I have odd shooting sensations up and down my leg. The oddest thing is a kind of burning sensation, but like ice rather than fire. Fortunately, that doesn't happen very often.

Neither my GP nor physiotherapist can work out what exactly I've done. It's clearly some sort of nerve issue, and it's clearly not very serious since I have most of my sensation; but it's weird and unpleasant and I don't like it. Also, whenever my left leg is bad, I end up throwing my weight onto my right leg as I walk around the house, and then it gets damaged as well. Joy!

On Saturday, I randomly stretched my legs, managed to overstretch my left leg YET AGAIN, and this time it feels as though I've actually ripped something inside because not only is my thigh numb, it's all puffy just above my knee. It's better than it was, but still not good, and it's taking all my spoons to deal with it. ALL my spoons. My ability to injure myself in my sleep is prodigious, but I need to figure out what the hell I keep doing to injure it over and over.

Also, partly as a result of the above, my sleep patterns are fucked. Absolutely FUBAR. I seem to now be on a cycle of waking up between 7 and 10 pm, and falling asleep about 10 am. This is so very broken I can't even describe it. And the sleeping pills I've been given, which work splendidly for when I can't sleep because of stress, do nothing for when I can't sleep because I'm not tired enough because I basically didn't come installed with the software for functioning circadian rhythms. I can be ridiculously tired - falling over with physical tiredness - and my brain still isn't sleepy.

Oh yes! And another thing! I managed to lose my Disabled Railcard on Friday 10th May! It was in my pocket in UCL Library, then suddenly not in my pocket by the time I got to the bus stop 5 minutes away. And I spent 45 minutes looking and asked in all the security lodges and so on. Clearly, someone picked it up. Whether they are now going to spend 2.5 years claiming reduced-price travel to which they are not entitled is a question which has been bothering me greatly, because it has my name on it, but not a photo. I have paid the £10 administration fee and have been sent a new card, but there's no way to cancel the old card.

There are issues to do with College which I can't even be bothered to attempt to write about right now. The only reason this post exists is that I've edited my irc rants into semi-coherent English. Also there is other stuff which I am not posting in a public post. Like all of this, really, none of it is the sort of thing that people need to worry about: but it is a source of stress for me.

It's really been one damned thing after another. None of them very major in themselves, but together overwhelming my ability to cope. I want a bit of breathing space without anything else going wrong for a while :S

I'm trying to drag my sleep pattern back onto something approximating normal for my time zone - or at least, normal for me. Today I woke up at 1.30 am and will be going to sleep sometime around 3 pm. So tired. I'm sitting here in brilliant sunshine nodding off and ready to fall over. Oddly, I actually woke up feeling like I'd had enough sleep.

I have far too many tabs open, so in an attempt to clear them, I shall share links.

Random gifs (or jpegs):
In Case Of Fire - Hostel priorities.
If someone from the 1950s suddenly appeared today, what would be the most difficult thing to explain? - So very true.
I've found the ideal job for some of you - Feline Lap Surrogate.
OMG, I want this octopus sculpture. The plant/wolf hybrid as well.
Oh, the Huge Manatee.
Inside the Robot Restaurant. Sadly not wheelchair accessible.

I also have serious links, but am far too tired to write commentary... so I'll leave those until I have a brain.

Blargh. Have basically done nothing for over a week. Was ill, went to the doctor, otherwise stayed in bed or lay around on the sofa. There's nothing quite like having a nasty virus while it's the time when a woman bleeds for a week but doesn't die. My evil gall bladder decided to start poking me again, for several days, but I refused to give in to its demands. (Gall bladders are remarkably sensitive to oestrogen levels - it's why it's stereotypically "women" and "fat people" who get gall bladder problems. I knew the pain would sod off once I was past that point in my cycle). Read a few books, played a lot of Oblivion. No functioning brain for anything else. My sleep patterns have become well and truly inverted.

And fixing them is hard, because it is Too Dark. Hilariously, the UK and Europe are still in "summer time" (or daylight savings, as the Americans call it). Australia is in "summer time", it doesn't make any logical sense for us Northern Hemispherans to be as well!

Tomorrow I have "volunteered" myself to be in College for 1pm, since it's the only time in the whole week that Philip is available to demonstrate the technique I need to use for the next part of my synthesis. Hooray - I love getting up in the morning! (Yes, it will be morning - I'll have to be up by 11.30am at the absolute latest to get in on time). I also really hope that none of my chemicals have decomposed sitting around for a couple of weeks waiting for me to get in and finish the synthesis. They're supposed to be stable, but I have no proof of that. Urgh.

It's officially Time To Start Using the Lightbox. I'm charging it right now.

Okay. My sleep "pattern" is now so firmly lodged in upside-down mode that I'm going to have to take Serious Action to fix it.

I am going to rush through a chronotherapy sleep reset cycle WAY faster than you're supposed to, because the other option is continuing to be non-functional. Yay.

So if you happen to phone, text, or email the address with my real name in it this week, please do so during the following times of day:
Today until 12 pm.
Wednesday midnight until 3pm.
Thursday 3am until 6pm.
Friday 6am until 9pm.

Times may be reorganized later in the week depending on how things go! Also, those of you who live outside the UK will have to convert this to your local time... so to avoid confusion, just use my "baratron" or "astra" email addresses, which don't make my phone beep!

And yes, I could set the options on my phone to turn off beeping on all emails and texts... but do you honestly think I'll remember that when I've been awake 15 hours and am dropping on my feet? When I'm overtired, I can barely manage coherent English, let alone thought...!

Posted via LiveJournal app for Android.

Eh. So, I sat down to work on some stuff for my cognitive behavioural therapy this evening, and instead spent something like 4 hours dealing with some epic wank online. Given how great my health and energy levels are, you can bet it wasn't the kind of wank that I had spare spoons to deal with - but I had to, because it was making me angry to the point of physically shaking.

I also found out what the weird thing that happens to me when I'm trying to get to sleep sometimes is called. A hypnic jerk or hypnagogic jerk, apparently. I was always worried that was some sort of seizure-type thing, but apparently it's completely benign and normal. However, it's more common in people with irregular sleep schedules.

My sleep schedule the past week has been completely fubar. I've been trying to get it sorted, but it's actually got worse. Joy and bliss! This may be due to the fact that I've run out of the high dose vitamin D capsules. I'm under the impression that I'm supposed to give it a few weeks and then have another blood test (so they can see what my vitamin D levels are when I'm not taking it as a supplement), but the pain in my legs is so freaking bad that I may have to start it up again to avoid screaming.

I've found another place that does vegan afternoon tea - this time with cream - and for only £9. Are you interested, nitoda? The scones still look a bit flat, but the cakes are impressive.

Right... back to my worksheets on "Overcoming Avoidance". (Yes, really).

It looks like it was a nice day today. Why did I sleep through all the sunshine?

Oh yeah, because I have chronic fatigue and a sleep disorder :/

Yes, I have actually been dead. I'm getting better though.

I've had some sort of virus which would probably have been incredibly minor in a healthy person - in an Interesting Science Experiment sort of way, I've managed to infect Richard, and he is basically carrying on with life as normal apart from coughing a bit and sucking throat lozenges. But with all my other health stuff, it's knocked me out since Sunday night. I've been asleep a lot of the time, having hideous snot attacks, and asthma.Today's the first day I've been well enough to look at the computer for more than 5 minutes at a time - although I'm feeling exhausted and headachy just from reading livejournal for an hour.

Although now that I'm starting to get better from the cold, my period would have to start. Argh. At least I can be comforted by the fact that there is something worse than period pain and a miserable cold at the same time - and that is period pain, a miserable cold and gallstone pain! Been there, done that, very glad my gallstones are mostly all dissolved now :)

Also glad that when I called the GP's surgery on Friday at 9.30am to ask when my doctor would next be in, they offered me an appointment at 4.10pm. THIS IS UNHEARD OF! Normally getting a same-day appointment with my doctor requires phoning on the dot of 8.30am when appointments open, and ideally physically going to the surgery to queue. He's given me this stuff called Baclofen which is a muscle relaxant, and is working wonderfully on the pain I've had for a couple of months from chronic hyperventilation/fatigue. It's not addictive and is safe for use in WAY higher doses (I'm taking 5mg a day, and the maximum dose used in severe spasticity is 100mg a day), so I can basically take it until I don't need it any more.

I just wish I'd known years ago that a drug actually existed that could alleviate my chronic pain, because I've spent years with the only known treatments being rest, strapping, and hot baths - none of them particularly effective. At least now I know enough biochemistry to appreciate what a GABA agonist is.

The biggest problem I have right now is that my sleep patterns have become completely inverted, again. I went to bed fairly early on Sunday night because I was exhausted (where "fairly early" for a night owl-type person is before 2 am), and then didn't wake up properly until 8pm. Then couldn't get to sleep before 8am, and now I'm just on this totally backward sleep cycle of waking up at 8pm and falling asleep at 8am. Hrm. I need to get it sorted because it's BiCon next weekend and I'd quite like to not be asleep throughout the entire day.

Have a lot more stuff to talk about, but I need to get off the computer now because my head is too icky. Hopefully write more tomorrow.