baratron: (bi_pride)
I have been very, very exhausted since Grant went home. I'm hoping this is situational rather than a relapse of chronic fatigue, since I'm in the process of trying to go back to university after two years off! (Honestly, the amount of crap and paperwork that I have had to wade through since March would daunt the most indefatigable of people. We're now aiming for me to have everything sorted out for 1st September ready for the new term which begins on 2nd October. I had been aiming for the summer term beginning in April, or at least to be ready to return in July. I really am completely sick of it.)

Due to the fatigue, I have left all my BiCon planning to the last minute. I just booked my trains. They are costing far too much money, but that would be the sick person tax. One of these days, I will simply book my train so very early that it costs under £20 for the return and just eat that cost if I am too ill to travel, because it is actually cheaper in the long run than booking my trains once I'm certain if I'm well enough to go. Sigh.

Since it seems that most BiCon discussion is done on Facebook and I don't have one of those, I'm not sure who is going other than [personal profile] skibbley, and [personal profile] ludy if well enough. Therefore I would appreciate it if you would please let me know if you are going or not?

I have arranged dinner on Thursday and lunch/dinner on Sunday with local friends, but I'm really concerned about how I'm going to feed myself for two days without a carer to cook for me, or how I'm going to carry food with me up to the place. There are probably people doing Ocado orders and suchlike, please let me know if I can go in with you on one. I have PayPal and/or can do bank transfers so that you get paid up front.

One of these days I will get around to updating you on things that have been going on lately. If you don't hear anything, assume that I am spending my days doing battle with bureaucracy and my nights doing battle with non-player characters in Elder Scrolls Online :)
baratron: (cn tower)
Home from travelling. Actually, I got in somewhere around 1 pm yesterday and proceeded to pass out for many hours. Woke up at 1 am and (much to my surprise) have been awake ever since. Husband has been snuggled. Boyfriend has been talked to on Skype. He looks very sad, poor thing, but it remains against the laws of physics for me to be in two places at once. Hoping we can have him visit in late June/early July for my birthday.

Super weirdly, I have been physically energetic enough to have emptied the laundry rack, folded the dry laundry, sorted all of the dirty laundry in my suitcase, put on a load of laundry, emptied the clean stuff out of the dishwasher and refilled it. I hope that I will not pay for this tomorrow, though I have A Theory. A theory which involves, of all things, vegan bacon and my ability to get it.

(Gods, I knew that Yves Veggie Bacon wasn't very fatty, but I didn't realise that 3 rashers had only 0.5 g of fat between the lot of them, along with 14 g of protein. Short of actually, y'know, BAKING my own tofu, I am unsure where to get tasty textured fake meat products which are low fat and high protein. Nasty-tasting, weird textured but low fat, I can do. Nice-tasting, well-textured and full of fat, I can do).

Continue to be Unimpressed with Aer Lingus. Will relate the full story later when spoons exist.

So tired

Apr. 19th, 2017 03:16 pm
baratron: (sleepy)
Ye gods, I am so tired.

Shifty is in the process of replacing all of the kitchenware and appliances that he "inherited" from various relatives. However, he doesn't ever use his toaster, so it's pretty low priority for him. The toaster doesn't pop up properly, so I usually unplug it and then reach in with a fork to get the toasted item out.

Today I caught myself reaching into the toaster with a fork while it was still plugged in, thought "I don't want to electrocute myself" and flipped the pastry with (now-burned) fingers. Then I did the exact same thing when getting it out to serve!

My brain is just fried with fatigue. I am seriously contemplating going back to bed because I'm woozy as hell. No idea why I should be so tired, beyond the normal chronic fatigue. I'm sleeping well and falling asleep within minutes of getting into bed, which almost never happens at home. Although yesterday I was feeling like a sim whose Social bar was close to zero, so maybe it's that.

Emailed Dawn and [personal profile] hoopycat a few minutes ago to see if they want to come round for dinner tonight. We have a metric buttload of food that needs to be eaten up because Grant and I keep going out. I'll be up for socialising once I've rested some more.
baratron: (aibo)
Today I experienced the joy which is seeing a doctor who doesn't know me. Apparently my usual GP is on holiday somewhere warm, lucky woman.

So I was explaining to the doctor that I have had chronic fatigue and pain on and off since I was 13 and I'm now 40, and that I was concerned about the pain in my left knee. The last time I was in this kind of pain was March 2003 when I got diagnosed with hyperventilation occulta. It's a chronic fatigue syndrome type of pain rather than an injury sort of pain.

I explained that I was concerned because I am unable to do very much exercise because of my exercise-induced exhaustion, and now because of this pain I can't even do the small amount of exercise that I usually do. It hurts when I sit, it hurts when I lie down, it hurts when I stand, it hurts when I walk, it hurts when I stretch. Nothing that I know of changes the pain. Since some of my other joints are starting to get achey too, I am concerned.

Trigger warning: unwanted diet advice. )
baratron: (boots)
I am alive. Coping with the hiatus hernia. Perhaps in a one damned thing after another sort of way. Still, the symptoms have all improved dramatically since I started eating much smaller meals and stopping before I feel full.

Now if my chronic fatigue and pain would kindly sod off, I'd be a lot happier. My legs have been useless for weeks now and I need to talk to my doctor about medication. My left knee in particular hurts if I rest, hurts if I walk, hurts if I stretch, hurts if I sit. Frankly, I can't figure out what doesn't aggravate the bloody thing.

It has been a dreadful year all round. Not least of all politically - as Richard pointed out today, when did the language of the far right become the ordinary way to describe things? And that's even without all the normal stresses of being a queer disabled woman that were already present before politics veered horrendously over to Farageland and Trumpsville.

Most of the good things that have happened this year have involved music, travel, or my partners. Sometimes at the same time. I haven't been well enough to travel much, but Grant came here in February, all 3 of us went to Boston in May to see Freezepop, Richard & I went to the Download Festival in June (and got thoroughly rained on), and I went to see Grant at his new home in Rochester, NY in September. We also saw [livejournal.com profile] ext_890197 and [livejournal.com profile] veryfineredwine, for the first time since I went to Boston to pick up wedding rings. I haven't written anything in livejournal about visiting Grant because it was quite honestly the only week in the past six months that I was not completely exhausted and ill. (Also, it was a 12-day trip including travel, so that gives you some idea of the health).

Richard is now in several bands, including one called Amps at Eleven. (There is a heavy metal umlaut on one of the Es, but I can't remember which one). They have actually done gigs recently, which is more than his other two bands are likely to ever accomplish. I sent text messages to everyone who I thought might like a classic rock covers band and be conceivably able to get to Raynes Park on a Tuesday night, but in the end only [livejournal.com profile] pilot_moondog came. Still, it was good to see Shaun.

I need to make a list of all the gigs I have been to this year. It seems like the only time I ever leave the house is for (a) a medical appointment, (b) to buy cake, (c) to see a band. It's crazy how many people who live in London I haven't seen in 3+ years. I miss having a fuller life. Doing something other than sitting up at night playing Elder Scrolls Online.

Don't get me wrong. I love my ESO Guild and my friends from our Teamspeak. But I'd like it to be A thing that I do rather than THE thing that I do. One of several ways that I hang out with friends, rather than the only one.

Who's still on livejournal? Am I going to be forced to start a Facebook account just so that I can still talk to people?

Blargh.

Nov. 9th, 2016 02:49 pm
baratron: (Warning: Sick!)
So I haven't written anything here since July, which is impressively lax even for me. In short, I have been suffering from the worst chronic fatigue since I lived in the flat and eventually got diagnosed with hyperventilation occulta. I am playing Elder Scrolls Online and chatting to people via Skype and my ESO Guild's Teamspeak channel, but barely socialising at all otherwise, even online. It's just too much effort given my state of exhaustion. I've left the house about 10 times in 4 months.

I have also had an ongoing cold/cough/snot disease thing since June when I caught lurgy at the Download Festival. I get ill approximately every two weeks and stay ill for a week. I have had ongoing digestive TMI since a couple of months before June. And I've been throwing up at least once a day for the past, er, few months.

My GP and I were hoping that it was a Helicobacter pylori infection because that is relatively easy to treat, even if the treatment is unpleasant. But that test came back negative. Nor was there anything particularly exciting in my blood test results. So now I'm waiting for a gastroscopy.

Thing is, I am not at all certain whether there is anything wrong with my digestive system. I am permanently snotty, despite antihistamines, nose spray and eye drops, and the vomiting seems to be related to excessive overproduction of snot. I understand why they're starting by investigating the digestive system, because of all the TMI. But I dunno. My suspicion is that, rather than there being something actively wrong, I'm allergic and reacting to something which forms a major part of my daily diet.

I don't know whether I'm more afraid of the gut biopsy coming back positive for coeliac disease, meaning I'll have to radically change my diet; or negative, meaning I don't have to change my diet (yet) but we still don't know what is wrong. I'm inclined towards wanting to know, because I have been having increasingly bad symptoms since March or April, and it's now November, and I am getting worse rather than better. I was supposed to be back at university by now, not living in limbo.

In exciting news, I got a call from the hospital a few hours ago. Apparently they've had a cancellation and wanted to know if I could come in tomorrow. I was extremely enthusiastic, even after they told me the appointment is at 8.25 am. Unfortunately I can't eat for 6 hours before the appointment, which isn't too bad - but nor can I drink for 4 hours beforehand. This would be fine if I wasn't nocturnal, but being thirsty makes me anxious. I am not looking forward to having my anxiety provoked. Nor am I likely to be able to sleep given the time of day of the appointment - I will be too anxious about not waking up on time.

Good thoughts, and comments about how trivially easy and unstressful your gastroscopy experiences were, would be welcomed at this time.

Plans

May. 5th, 2016 03:39 pm
baratron: (dino)
I did not get around to booking for BiCon. The closing date for accommodation was just too early considering that I have no idea what my health will be doing in July. If I am not much better than I am now, I will be going splat and having to go to bed in the middle of the afternoon, at unpredictable times, and it seems fairly pointless to pay money to go away in that scenario.

Which means you might be questioning how come I can go to Boston next week, but that will be easier since I will have the husband and the boyfriend, both of whom are entirely competent carers for me. If we're out and about and I feel too wobbly to carry on, I can trust either or both of them to get me back to the place where we're staying and/or get food into me. Neither of them want to go to BiCon (they are both way too introverted), and I don't have anyone else who is familiar enough with my current limitations to act as a carer. (I know people who would be happy to ensure I got fed, but I wouldn't want to ask any of them to give up what they want to do at BiCon unless I was paying them, which is a whole other kettle of fish and... yeah.)

I still need to talk to my university, because I was supposed to be going back when term started on 18th April, and I am clearly nowhere near well enough to go back for at least a few more weeks. It's likely that I'll actually go back next term instead, as long as they aren't going to give me grief about the fact you're only "supposed" to have a maximum of 2 years (6 terms) "off" on breaks of study during a PhD course. I'd love to be back, but it would be a waste of everyone's time and my money, since I just about have enough energy to get downstairs on average once a day. The increased thyroxine and vitamin D are helping up to a point, but I am not magically better and dancing around full of the joys of spring.

Today is however a glorious day and I went out to vote for the Mayor of London and London Assembly. No prizes for guessing which party won my first choice, and even my second choice is pretty easy to guess. (Hint: I didn't vote for anyone in favour of leaving the European Union). Politics lately are stressing me out: the London Assembly election today, the referendum on leaving the EU in a few weeks, and the horrible, hateful candidate up for election as President of the USA. Honestly, if it weren't for that nice Mr Trudeau, I'd be hiding under a rock.

Also today I washed my dinosaur. Yay! for clean dinos.
baratron: (endurance)
Yesterday and today, I've been wanting to talk to people but I have absolutely no spare energy with which to do so. I have reverted to taking 2000 iu of vitamin D per day as of today, because I'm shattered and not convinced that the 400 iu tablets are doing enough.

I'm supposed to be going back to College in 10 days or so, but I haven't sorted out any of the paperwork yet because it involves too much effort, and circular situations where I need a form from A to give to B and a form from B to give to C, but I can't get the form from A until I have the form from C. Gah! And right now, I am sufficiently exhausted that I am not even sure if I'm up to going back for this term. I really can't go back and then immediately have to take time off again, but I do need to get things like Disabled Students' Allowance in place again if I am going back.

Mental health has not been good in my little family this past week. We have all been depressed for no particular reason. Richard has been anxious, Grant has been tearful, I have been having nightmares. I know that I need to have my next trip to see Grant arranged as soon as possible, so it's settled and I have something to look forward to, but I just don't know when will be convenient. Since this year is a round-number birthday, I was hoping to do something special for it, but I am increasingly feeling that my original plan (go to Iceland again) isn't what I want to be doing this year.

While organising trips to various places, I have to decide if I am going to BiCon this year. I feel that it would be beneficial to me to be in bi space considering that I currently appear to the outside world as straight twice over, but it involves energy and organisation which I don't quite have right now. The deadline is apparently pretty soon though. Who else is going?

In other news, I have found some mysterious photos on my computer. I mean, they are patently photos of me and Richard hanging around in our hallway in January 2012, but it is mysterious as to why we took them. They are all exceedingly yellow and would require considerable correction in Photoshop to fix. I thought maybe Richard had bought a new camera and we were testing it out, but the numbering starts at IMG_6562.jpg. Weird!
baratron: (aibo)
I have been obnoxiously ill lately - even since before I left Canada. What doctors refer to as "Tired All The Time" (TATT), in a lot of pain with my joints, plus a high pulse rate for no particular reason. Yesterday my chest started hurting - not enough to take myself straight down to A&E, but enough that I thought I should go to see the doctor today. So I did, and discovered that my pulse was 111 bpm at rest. Which is worrying. However, since my blood pressure was 126/86 sitting down and 125/85 standing up, not "You might drop dead any minute" level of worrying.

Apparently the combination of TATT and tachycardia with normal blood pressure suggests that I might be anaemic. So I then had to take myself to the hospital for approximately 12 different blood tests, including full blood count and calcium levels, and also TSH just in case I am taking too much thyroxine. Next week I have to have an ECG, although the doctor listened to my heart with a stethoscope today and it didn't seem to be doing anything erratic.

I'm just sick of being sick, if you know what I mean. I kinda hope this turns out to be simple anaemia with no complicating factors. Although it occurs to me that my digestive system hasn't worked properly in years, and the chronic fatigue clinic did tell me that some large percentage of their patients turn out to be coeliac... I guess if the blood tests do show anaemia then I have an appointment with an intestinal camera in my near future.

And then on top of this I have the joys of my Evil Left Hip and Evil Sacro-Illiac Joint and Evil Uterus and every other part of me that doesn't work properly... Nothing I have is very serious by itself, but the combination of having to deal with a whole load of health problems all at once is, well, exhausting. Even without the exhaustion.
baratron: (goggles)
Today I received a letter (re-)awarding me Disability Living Allowance until September 2018, or until they decide it's time to make me apply for Personal Independence Payment instead. It is at Higher Rate for Mobility and Middle Rate for Care, which is the Right Decision.

Apparently it was worth spending six days filling in the form.

I'm extra pleased since I only received the "we have got your form and are processing it" letter on Saturday, so I had been anticipating many weeks of waiting. As it is, this is all sorted out for a couple of years and I don't need to worry about it.

The next thing I need to worry about is that I've been called for Jury Service. Which is everyone's civic duty, and ordinarily I would be entirely in favour of going to sit in a court as a visibly Disabled Person. However, various parts of my health, most notably the arthritis in my spine and associated neurological pain, have been so terrible lately that I don't honestly think I am capable of sitting still for hours on end. Also, my chronic fatigue means that I am not always able to take in information presented orally and I rely on adaptations like a voice recorder and laptop for taking notes at uni, neither of which I believe would be allowed by the court. So I have to write and tell them that. URGH MORE BUREAUCRACY.
baratron: (endurance)
I just did something I promised to do last week… tidy up the massive pile of mail in the hall. Half an hour of non-stop sorting and I’ve done about a third of it.

You know your house is a mess when the junk mail piled up in the hallway contains a “Win a Trip to the London 2012 Olympic Games” flyer, and it's August 2015. I am not even joking.
baratron: (eye)
So I haven't written anything here in over 2 months, which is probably the longest I've ever gone without updating this journal since it's existed. Mostly this has been because I've been busy enough to lack spare energy to write about what I'm doing, combined with the fact that what I'm doing isn't even interesting, but also because I need a new phone. My phone is an HTC Desire Z which is at least 4 years old, and it's reached the point of unreliability where it randomly reboots itself with no warning. Also its hardware keyboard (the main reason why I've kept this phone for so long - I find touch screen typing very difficult) randomly misses keystrokes or adds extra ones. To add even more insult, I can't even comment on some people's livejournals because I can't open the "comments" pages from my phone web browser - it just gets stuck in a loop of reloading the post without the comments. Bah.

Some good and interesting things have happened. We went to the Jettblack album release party, which was held in a basement bar in Soho down a terrifying flight of stairs - which necessitated the band members carrying my wheelchair down the stairs! Also we went to see Ginger Wildheart's Songs and Words show in Leeds, which was extremely moving and also hilarious. Since I'm a member of G.A.S.S. we also went to the Meet and Greet where I gave Ginger a t-shirt that I'd seen online and thought he might like the slogan of... and he told us how his youngest child believes that Lemmy is his grandad! The next day we met up with some of my friends from Pokecharms, and went around the Royal Armouries. This was delightful since we're all video gamers and were looking at old swords and armour going "That's like the $fill_in_the_blank armour from Skyrim!"

My chronic fatigue is still crap. I got the results of my blood test back on Tuesday and discovered that my TSH level is now 1.31 - which is well within normal by every reference range I've ever seen! So... it's not my thyroid making me exhausted all the time. Going to get my vitamin D level checked again because a few years ago, the anticonvulsant I take as a mood stabiliser was destroying all the vitamin D in my body. But given that I take a high dose vitamin D every other day, that might not be the problem at all.

Also, the Mirena coil and I are officially Not Friends. Cut for those who wish to avoid )
baratron: (endurance)
I am Not Dead, I'm just dealing with very low energy. As in: I had a Livejournal post all planned in my head, but after chatting on irc for 20 minutes I've lost the ability to write it. All I've been doing since coming back from Sonisphere is sleeping and playing Elder Scrolls Online, because that fulfils most of my urge for companionship without actually exhausting me the way conversation seems to.

I "need" to write up both Download and Sonisphere, because we saw lots of bands we've never heard of before and quite liked, and I want to remember who they were so I can check them out again. I also want to post some of the photos from my birthday trip to Whipsnade. And then I need to get back into my College work, since I have a mountain of stuff to do over the summer. Argh *flail*.

\m/

Jun. 18th, 2014 03:34 pm
baratron: (richard)
I'm back! Although you could be forgiven for not knowing that I'd gone anywhere, since I didn't post about it due to a complete lack of spoons.

Richard and I went to the Download Festival and slept in a tent for four nights. There was much music and not much sleep - partly due to the loud music, but mostly due to the last flight out of East Midlands Airport being about 1.30 am. I actually managed to sleep through a whole load of loud music on Sunday morning due to being absolutely collapsed with chronic fatigue, but I couldn't get to sleep all the time there were aeroplanes going overhead.

I need to write up all of the bands we saw. Actually, I still need to write up Sunday of last year's Download, and some of 2012's Sonisphere (!) because I like to have a record of bands I've seen and what I thought of them. However, right now I am too knackered and too busy. I have to give a presentation about my work at the Graduate Symposium next Thursday (26th), and I didn't manage to get it written before I went away. Right now I'm not even sure if I'll get to celebrate my birthday this weekend because I might need that time for Powerpoint wrangling (urgh!).

I am so freaking tired. If you've never had an illness which left you with severe fatigue, imagine the worst flu you've ever had, and the exhaustion, brain fog, and all-over aching from that. I sorta want to fall over dead for a few days and not have to worry about anything - except I can't because I've got Things to Do.
baratron: (endurance)
I haven't been feeling very successful in my life lately. I came back from Canada and collapsed in a heap of exhaustion and/or depression. No idea which. Possibly both. The thing is, I have an overwhelming feeling that it's depression due to physical health problems rather than my mental health screwing up.

I didn't mention this earlier, but I had my thyroxine dose increased just before I went away. My TSH level was 4.something (I wrote it down, but I've no idea where I put the piece of paper - 4.7, perhaps?). It was high enough to be in the range where even the NHS would advise another test in 6 months if I wasn't already on thyroxine. In this situation it was a clear indicator that my thyroxine dose wasn't high enough any more. Still, I was only on 25 mg, which is nothing.

I have a feeling that when my thyroid is working less awfully, I will feel better in all sorts of ways. Not sleeping for more than 12 hours a day would be nice. I've had a few days where I've slept for 10 hours, woken up, eaten something and taken meds, and then gone back to sleep for another 6 hours. I've had a few more days where I've slept for 4 hours and then woken up wide awake and been entirely unable to get back to sleep.

I have done NOTHING with regards to College work. I have done NO WRITING for pleasure since 6th January, except that today I managed to produce 900 words, of which about 700 are good. I owe BiCon an Access Report and am actually rather grateful that Jennifer has been on my back about it, because it shows that the BiCon team takes access seriously.

I haven't read any books in weeks. I've read some fanfiction online, and also some short fiction by Sarah Monette, who is rapidly becoming one of my favourite authors. And also this by Elizabeth Bear (which made me cry my eyes out) and this by Marissa Lingen, courtesy of [livejournal.com profile] elisem who makes necklaces which people write about.

About all I've done constructively lately is play Animal Crossing: New Leaf. And, this weekend, I took part in the beta of The Elder Scrolls: Online, which was actually about 100 x more fun than it should have been considering it's (a) an MMO with a monthly fee and (b) messing up some of the established Lore of the universe. Today I did a small amount of posting of information to the UESP wiki. But in general, life has been relentlessly awful and exhausting, even though nothing much has happened.
baratron: (angry)
Safely home. Got in yesterday morning and went to bed for 6 hours, then Tim & Peter came round to take me out for dinner, then I went back to bed and slept for another 12 hours. I would now be feeling like a human being if my mother hadn't spent the whole day driving me insane.

Today I had a great Need To Be Alone. While I'm usually pretty extroverted, travel knocks me out and afterwards, I just want to be on my own while I recover. It's at least, in part, a chronic fatigue thing - having to deal with other people and take in unnecessary aural input exhausts me sometimes. But she decided to spend the whole day here, trying to organise our damned house before Richard gets home, and failing to take hints. I don't know how much more explicit I needed to be, since "I would like to be left alone, please" wasn't good enough.

To me, being "left alone" means being alone in my house.

To her, it means that she stays downstairs most of the time and only comes up to bother me once or twice an hour :/ I guess I should have said "Please will you go home", but I only just thought of it :/

So she decided I was being ungrateful for her help, when it was her simple PRESENCE that was annoying me. I've been getting progressively more-and-more bad-tempered, and only calmed down in the hour and a half since she left. And I haven't got anything done all day, because I needed alone-time in order to summon up the requisite attention span to do what I wanted.
baratron: (cn tower)
I should probably update you on what we've been doing in Montréal. Though it's not very exciting - Richard has been mostly working, and I feel as though I've done nothing other than sleeping and eating. That isn't completely true, though it certainly did take me a long time to recover from the flight and figure out how to pace myself properly. This is the first long trip I've taken since being diagnosed with chronic fatigue, and is the first holiday of any sort we've had since going to Zürich in August 2012 (and that was hardly relaxing since we were away with my mother who is exhausting!), so I didn't already have the skillset.

On Saturday we went out for our anniversary dinner (which was a bit rubbish) and for cake afterwards (which wasn't), and then to the Musée d'Art Contemporain de Montréal. Most of the museum was closed for rearrangement, but we saw A Matter of Abstraction and On Abstraction III, both of which were utterly, hilariously awful. There were a few good paintings and/or sculptures - the ones which had had actual effort put into them (you can download the PDF brochure if you're interested - some of the pictures are really worth seeing). But we were extremely unconvinced by the sheet of aluminium, identical to any other sheet of aluminium from a mill, leaning against a wall and claiming to be a piece of art! At least Marcel Duchamp signed his urinal and turned it into art that way!

On Sunday, we went to the Biodôme. That was awesome, but then we like plants and animals so it was hardly surprising that we enjoyed it. The rainforest and maple forest areas were particularly interesting, and we're looking forward to going to the Jardin Botanique this weekend. [livejournal.com profile] papersky said there is a lot to see there even in winter because there are greenhouses. I am sad that we can't go up the Olympic Tower because it is closed for annual maintenance, given that it has a FUNICULAR. (I managed to annoy my family immensely in Zürich by dragging them onto the funicular and rack railway and aerial tramway - what can I say, I'm a geek for weird forms of public transport. Apparently I wrote absolutely nothing about that trip on livejournal, which saddens me now, but I assume I was just too exhausted).

We are currently unsure when we are leaving Montréal because we are currently uncertain when Richard's job here will be finished. Going to Toronto by myself just isn't at all practical when I can't lift my own case or get into anyone's house due to stairs, so I might have to go home instead. Unknown. Ask me later.
baratron: (endurance)
Happy 2014 to those to celebrate such things. I personally don't, nor do I make New Year's Resolutions. It's the wrong time of year where I live. Between winter viruses and chronic fatigue and seasonal affective disorder, my body's been in hibernation mode for the past month. Some days it's a miracle that I'm out of bed and dressed. So it's totally the wrong time of year to try making lifestyle changes. "Do more exercise and eat more healthily"... Not going to happen when my body just wants to sleep!

But it's still interesting reading other people's New Year Resolutions :)

The one thing I have been doing for the past couple of weeks is deliberately attempting to eat more fruit by buying bags of clementines and leaving them around the house. I eat plenty of vegetables, at least with my main meal of the day, and I generally drink innocent smoothie equivalent to "2 of your 5 a day", but I'm really bad at eating fruit even though I like it, because of the "hassle". So I'm trying to make sure that there's fruit lying around so I don't have to struggle down the stairs, don't have to wash anything, can just pick it up and eat it when I'm hungry and want something sweet.

I may be eating less chocolate as a result. We shall see.

Haven't done any College work in over a month, again. I've had a cold, or several colds in a row, since 3rd December and spent about 2 weeks too freaking wheezy to think. (It is a well-known fact amongst my asthmatic friends that not being able to breathe makes you stupid). Feel like I might be coming out of it, touch wood.

Of course, it would all be a lot easier if people didn't dose themselves up and carry on going to the shops as usual when contagious :/ My immune system's better than it has been in the past, the various supplements recommended by the Chronic Fatigue Clinic seem to be making a difference. But it's still terrible. This is not a request for advice.

I have mostly been sitting or lying around, reading books and playing video games. I've read a huge number of books. Haven't done anything creative though. Haven't really had enough brain.
baratron: (goggles)
I have officially started back on my PhD. Apparently I didn't manage to tell you that I was eventually successful in getting my project changed, probably because my head was all over the place at the time. I also have a laboratory assistant who is presumably going to be paid out of Disabled Students' Allowance money, and who has been working for a couple of weeks.

Today I did about 4 hours of work. Not what you might consider "proper PhD-level research", but work with textbooks and online sources and mechanisms nonetheless. Revising things I'm supposed to know and learning new things that I haven't been taught.

I need to stop getting myself down/beating myself up because of everything that I don't have energy/spoons/tuits to do, and start celebrating everything positive that I do manage.

I need to stop comparing myself to other PhD students and postdocs who either have no health problems at all, or have everything well under control. Most human beings do not need to rest and/or sleep for literally half the day every day. It's no wonder I can't work at the same rate as other people when I need so much downtime in order to function.

What I really need is some role-models with long-term chronic illnesses which wax and wane and sometimes require them to take several months of leave of absence, but who have managed to achieve to a high level nonetheless. Anyone know where to find such a thing? I often feel as though I am THE only scientist in the world with my kind of health problems. And don't mention Stephen Hawking, he's exceptional. I have neither his brain nor his energy level.
baratron: (corrosive)
I was going to eat this frozen macaroni "cheese" thing for lunch. It's one of the only vegan ready meals that exists which is also close enough to food for me to be able to consider it. But I opened the packet and it had a 1.5 cm thick layer of ice crystals on top. This wasn't promising. Hacked that off, and found the pasta and sauce underneath was all freezer-burned. Tried to cook it anyway but it's completely dried out and inedible.

Obviously, my mum can take it back to the shop and complain, but SOMEONE has fucked up the storage of the frozen food somewhere along the line. I'm suspecting it's the shop where she bought it because I've had dubiously slushy, obviously melted and refrozen ice cream from there before. Bloody "health" food shops that can't manage to keep their freezers at the right temperature :/

So now I'm eating a bag of crisps and an apple and pretending this is lunch. My back and left leg hurt too much for any kind of cooking which involves more than sitting on a BEKVÄM stool while stuff heats in the microwave. Can't even manage pasta or rice today since I can't bend down to get a clean pan out of the cupboard or reach up to get a bag of carbohydrate product out of the other cupboard... Life would be so much easier if I didn't have all these food intolerances - but the Chronic Fatigue Clinic specialist (an immunologist) reckons they're due to the chronic fatigue anyway. Urgh.

Have to go to UCL for a conference tomorrow & Wednesday. Not looking forward to an early morning. Well, I'll get there as soon as my leg lets me.

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