helen-louise's journal

I did not go to Bicon for various reasons. So why do I have con crud? My throat is as itchy and scratchy as if I'd been snogging a whole load of interesting strangers with all sorts of exciting bacteria living on their tonsils, and I am as tired as if I'd spent the whole weekend partying instead of sleeping. Hmmm.

Fortunately, it doesn't actually seem to be oral thrush from my new inhaler. Pretty sure it's just some sort of viral or bacterial infection.

Though I am curious about how I could have caught a viral or bacterial infection when I have literally not left the house in a week. Richard's been in and out, but he hasn't been unwell for at least several weeks. I suppose he could theoretically be a disease vector without getting ill himself, but it seems unlikely.

Today I woke up with my spine twisted into a pretzel and a level of 7/10 on the pain scale. Before I took painkillers, I thought I was going to puke where I hurt so much.

In other news, my mental health isn't quite as catastrophically bad as it was last week. I haven't felt suicidal in a whole 48 hours! Still having epic fits of crying though.

It would be nice if I could have the improvement in mental health without the worsening of physical health, you know?

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.

It seems to have been ages since I've posted anything in livejournal. I have been very short of energy and not doing much except for playing Elder Scrolls Online and hanging out at home with Richard and on Skype with Shifty. Seriously, I've hardly been out of the house in the past month. I miss the friends that I haven't been seeing, but I haven't wanted to be social much either.

Still don't know what's going on with my heart. Apparently I didn't have enough spoons to write about my trip to Cardiology at Queen Mary's Hospital in Roehampton, but it wasn't very exciting. They did a super-amazing high-definition ultrasound of my heart and it looked entirely normal. I have an appointment at the absolute crack of dawn on 15th November at St Mary's in Paddington for more tests. Am far more anxious about the tests than about whatever is wrong with my heart.

Two weekends ago my evil sacro-illiac joint decided to play up and I had several days of intense stabbing sensations in my spine, plus the horrible numb referred pain in my left thigh and finally the proof! that all that is wrong with my left hip is that it's connected to that part of my spine. Fucking ow. I have, however, discovered the perfect way to describe my back pain. It isn't "sharp" or "dull" or any of those words that people use. It is like being stung by an insect or pricked by a needle approximately once every 3-5 seconds. And yes, it's about as distracting as this sounds, which is another reason why I haven't really been in contact.

Last weekend we went up to Wolverhampton to see a whole load of bands, which was great apart from the fact that Richard and I both came back with a stinking cold. It was weird because we don't normally catch a cold at the exact same time, so we've been able to compare the progression of it. And it turns out that my shitty immune system isn't all that bad when compared to Richard's. We're both quite unwell still, though.

I really need to write about all the bands I've seen lately because I have been to some good gigs, but that would require ability to do coherent writing, plus sufficient spoons to pull setlists off my phone and photos off my camera, which is a little more than I can manage right now.

It's currently 6th November and I wanted to do NaNoWriMo this year. I'm not well enough to be doing much with my academic work, but I could conceivably sit down and bash out another 50,000 words of fanfic. Maybe even get my epic story finished. Is it too late to start now? I guess I could catch up, maybe...?

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.

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.

Feeling pretty blah due to colossal amounts of back pain.

The actual issue with my back is that I have a bunch of vertebrae near the bottom that don't move properly because of arthritis. My spine's been dodgy since I was a teenager because I have a minor scoliosis near the top of it - nothing terribly serious, but it's affected how the vertebrae can move and I'm a lazy git who doesn't bother to do her physiotherapy exercises unless she's in screaming agony. The scoliosis bugs me mostly because without it, I'd be 2-3 inches taller, which is a lot at my height - it makes the difference between being "bloody short" and just "short" :)

The part of the spine at the bottom, the sacrum, is fused together by design, but there should still be movement between it and the various other bones there - hip joints and so on. Mine's been inflamed and not moving properly, probably for years. I had physiotherapy for a while, which was really helping, but had to stop when I developed a strange weird numb patch in my left thigh. That's been there for many months but has been vaguely under control with gabapentin.

So i went to hospital on Saturday and they injected steroids into the facet joints between the inflamed vertebrae. It's not as hardcore as "needles in the spine" make it sound, but it's scary because it has to be done under X-ray to ensure they hit the right place, and if you have a medical phobia and an anxiety disorder, you tend to catastrophise and imagine everything that could possibly go wrong. Anyway. It was fine.

Except that now I seem to have more movement, and my muscles are hurting like hell. The right side of that area is hurting, and the pain has always been on the left or in the centre before. Maybe they managed to fix the pain in the left of my back by moving it to the right side instead? Ha, no. It's far more likely that I have more movement than I've had for ages, and the muscles around my spine are complaining because they're not used to it.

But it's distracting as hell. I was trying to get on with PhD work yesterday and couldn't due to general wooziness and fatigue. Today my neck and the middle of my back hurts, and I can't get comfortable in any position at all - not even in my £800 orthopedic chair. Also, the numb patch in my thigh has returned and is really bothering me. I clearly need to start doing those exercises again, as well as getting referred back to physiotherapy.

Bah.

Woo. I feel clever. I worked out that a certain molecule had to be put together in cells by polyketide synthesis. And the mechanism I sketched the other day appears to be basically correct, except I didn't know about a particular gene carrying out selective reductions.

I am recording this since research involves many episodes of feeling like you are the most stupid person on the planet and no one could possibly be as awful as you, and it's nice to celebrate those occasional moments when you get to feel pleased with yourself :)

In other and mostly unrelated news, I am Annoyed with the Pain Management Clinic at Kingston Hospital for failing to get back to me regarding the results of the MRI I had on 5th August. I have been chasing them up since last Friday. The receptionist suggested that the pain management doctor might call me at the end of his clinic on Monday, but he hasn't and - to be honest - nor did I expect him to. I just want to know what's supposed to be happening next, you know? Do I continue taking more and more gabapentin? Is there something obviously physically wrong that they might be able to treat?

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

Have spoken to doctor now, and am starting on 25 mcg (or μg) of thyroxine imminently.

It's all fun when you're as broken as me. They've been rather leery about assuming that I'm hypothyroid over the more than 5 years in which I've exhibited raised TSH because even though I have all the symptoms bar one, they're rather vague symptoms: physical exhaustion, mental fatigue, putting on weight, not being able to lose weight, water retention, feeling cold all the time, dry skin, hair falling out. I'm also on a medication that can cause artificially raised TSH (carbamazepine). ( Read more... )
Anyway. Apparently I've now had enough blood tests to exclude pretty much anything else that could be causing the symptoms AND have hit the magic threshold, I'm going to try thyroxine. The worst thing about going on thyroxine is that I am going to have to, finally, after years of resisting because it makes me feel too broken, set up an app on my phone with dozens of alarms to tell me to take pills at different times of day. (I have the app already, don't need recommendations, thanks). Thyroxine has to be taken 4 hours before vitamin pills containing calcium or iron (which is every vitamin I own), and I think before CQ-10, but there's no way on earth that I can be conscious for 4 hours without my vitamins. I kinda rely on them to wake me up. So I'm probably going to have to set an alarm to wake me up to take the thyroxine, then wake up again four hours later to eat and take vitamins. ARGH! And I already have a venlafaxine alarm because the 37.5 mg tablets don't come in extended release in this country...

Look, I know it could be worse. It's not even first-world problems - there are plenty of first-world countries where it would cost me more than a total of £104 a year for every medication I take. (I believe that if I need to continue on thyroxine for life, then I'd get a medical exemption certificate and would never have to pay for any prescription ever again, but I'm not sure how bad one's hypothyroidism needs to be to qualify for that, the website is rather unclear). HIV only a few years ago involved well over 20 pills a day just for that, many of which had to be taken at fixed intervals apart from each other. So does cystic fibrosis - and that comes with a death sentence if you don't get a lung transplant before a certain age. Being on thyroxine and having to time my meds? Not the end of the world, and it's very likely to make me better. It's just... one more thing to make me feel weird/broken.

Also, soya is supposed to be Bad For Thyroids, ( Read more... )