helen-louise's journal

My brain is fried. My body is fried too.

The anxiety and depression seem to be better but I have EPIC levels of chronic fatigue instead. I slept from 7.30am until 3.30pm on Wednesday, then from 8pm until 1am on Thursday, then from 7am until 2pm on Thursday, then from 5pm until 11.15pm. All times approximate.

I am attempting to do work for my degree after not having been well enough for some time, and I'm doing a very good impression of this meme right now:



Next week I have to make do without a Richard because he is being sent to Munich for work. I have no idea how that's going to work, either. (Volunteers who can come to Kingston to feed me will be welcomed if I'm not asleep. The being asleep at awkward hours is going to make that really tricky.)

I am visiting Grant in the US!

My flight on Tuesday was one of the least unpleasant transatlantic flights I've ever taken. No turbulence at all until the final descent, enough spare seats that I didn't have someone immediately next to me, they fed me twice with food which was labelled as allergen-free, my own wheelchair got delivered directly to the plane (!) only a little more broken than it was before and easily fixable. I should probably emphasise the last point because it's really unusual for an electric wheelchair to make it directly to the gate. More usually they bring me a manual chair and a minion to push, and then I pick up my wheelchair either at the top of the ramp or down where you pick up cases.

We went for a meal at the wonderful Veggie Planet in Mississauga, about 10 minutes away from Toronto Airport. This place almost literally saved my life when my flight was delayed for 26 hours in April. I mean, I have enough body fat that I wouldn't have actually dropped dead of malnutrition, but you do not want to know how grumpy I get when I have low blood sugar - let alone when I've slept for an insufficient amount of time in my clothes in an overpriced hotel room.

Clearing both Canadian and American customs was super easy and friendly. The Canadians were just like "What are you doing in Canada?", I said, "Going to have lunch and then going to the US", and they waved me straight through. American customs are often highly suspicious when someone on an overseas passport crosses the land border, because they think I might have been living in the US and I've just crossed the border to "reset" the 6 months that a tourist is allowed to stay without a visa, but we've done it enough times now to know the "correct" answers. Plus I can prove exactly where I've been thanks to location stamps on my photos and Google Maps timeline. Rather than me moving to the US, what we really need is some way to move Grant to the UK, but that's... complicated.

So it was all good, but travelling for this distance with chronic fatigue syndrome and having been unwell immediately before (I really thought I was going down with a cold, but it evaporated), and having had no sleep for 30 hours is going to knock me out for several days. (To be fair, I did fall asleep on the plane 5 times, each time for less than a minute.) Yesterday was a fun day of... sleep. Today I woke up at noon and am currently contemplating some form of breakfast.

98% of my socialising is done on Skype, Discord and Teamspeak these days. Which means that if you're not on Skype, Discord, or Teamspeak, I probably haven't been speaking to you.

I'm just very, very, very lacking in spoons for anything else. I've been going out of the house on average less than once a week, and then needing a whole day in bed to recover the next day. I've been reading Dreamwidth and Deadjournal without finding the energy to reply to people. Even when they've been in distress. I've been thinking of them and sending good thoughts in their direction, but that probably isn't much good without also mentioning that I'm doing so.

Feel free to send text messages. I can do "conversation"-type replies. I just can't do email-length replies, because that involves far too much coherent thought for current state of brain.

Oh yes, and don't even ask about the mess that is my return to university. *facepalming forever*

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.

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. )

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.

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!

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.

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 )

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.