helen-louise's journal

Had my appointment with the Pain Management consultant at Parkside Hospital in Wimbledon on Friday. This is a posh private hospital, yet I got an NHS-funded appointment there. I am not complaining.

As you may remember, I have arthritis in my spine which causes all sorts of weird and "interesting" neurological effects. The actual patch of inflammation is tiny, and yet it presses on a nerve severely enough that I have a permanent numb "dead" spot in my left leg, plus additional events of screaming agony.

So every year or so, I get injections into my spine of a long-acting steroid and painkiller combination. They are called facet joint injections and I've had them done 3 times before. It counts as minor surgery because it has to be done under X-ray, since it would be Very Bad if the needle gets in the wrong place. But once I've recovered from the bruising, I have a lot less pain and a bit more mobility.

The first and third times, it was done by the consultant that I have my face-to-face appointments with and it helped for about 6 months. The second time I had it done, it was a different doctor who was in a hurry and didn't listen when I told her that my Large Arse requires two shots of the anaesthetic in order for the needle to get deep enough. So it only helped for about 3 months.

I am so glad my GP found out I could see the same specialist at a different hospital. Kingston Hospital has good medical staff but appalling organisation and/or administrative staff (not sure which), and the wait times there are horrendous. I am in no doubt that if I'd gone to Kingston, it would have been 6 months or more just for the first appointment, and then a further 4 months before the treatment. This other hospital is a train + bus ride away rather than a short walk, but I only had to wait 6 weeks to see the doctor, and then another 6 weeks for the treatment. It's scheduled for 1st December.

Today I have been ADULTING like a PRO. I called the Student Loans Company about the threatening letter which they sent me. To be fair, I have an income-contingent student loan, and they received information from the Inland Revenue to say that I was no longer employed, so they wanted to know where I got my income from, on the basis that I might be secretly earning a small fortune and secreting it away somewhere.

I still have to fill in the damned form, but at least they know that I called them and I'm not trying to avoid paying back the loan.

I also called EDF Energy to get moved onto a fixed-rate tariff that will cost £76 per month instead of the variable-rate tariff which costs £100 per month which we have been on because I didn't have the spoons to deal with it before. Now I am drenched in sweat and I don't think it's only because of the weather.

Why is adulting so exhausting? I mean, neurotypical non-depressed people manage it all the time.

Alexa thinks it's because of tuits/spoons. Adulting uses lots, and they have more of them. I think that explains how they're able to do it more easily, but it doesn't explain why it should take so many bleedin' spoons to do pretty straightforward tasks. I mean, it shouldn't be that difficult to either call or go through the website to change your energy tariff, when you're already being a lazy git and staying with the same energy company because you don't have the energy to start looking around for better deals. But apparently it is? (Actually, I did forget you could do it through the website. That would have made it a lot easier.)

I also still have to deal with Student Finance England and my university, but this also requires dealing with my doctor. I need proof that I've been too sick to be studying for the past year as well as proof that I am now recovered enough to go back. It's a bit too much considering I've been revoltingly ill with bronchitis for the past couple of weeks. I have recovered enough to only need double my usual asthma meds, rather than 6-8 times my usual dose plus oral steroids. But I've only been out of the house 5 times since 14th June, and two of those were doctor's appointments.

Blargh blargh blargh. So much ill. So little energy.

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 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.

Survived having needles stuck in my spine! I am currently numb between the middle of my back and my knees, and I can't really walk without holding onto things, but I don't seem to be having any life-threatening reactions to the drugs yet. So... tentative yay?

I was Very, Very Brave and listened to the heart rate monitor, and tried to make it beep as slowly as possible. And that is all I am going to say because I managed to get through it without crying even though I was terrified, but if I talk about it now I will start crying.

Also, I know he hit the right spot in my spine because the nerve in my left leg that goes numb (which was the whole reason I got referred to the Pain Management clinic in the first place) REALLY started complaining. It went both numb and incredibly hot at the same time, which was a very bizarre sensation.

Apparently I should carry on taking the gabapentin for a while because I'm on a low dose of it, and I can go back to physiotherapy in a week or so. Well, it'll take more than a week to set up physiotherapy. But I am looking forward to being able to stand up for more than 3 minutes at a time.

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.

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... )

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.

Have successfully been to the doctor. Have agreed to keep increasing the carbamazepine to a maximum of 600 mg, and to lower the ursodeoxycholic acid to 75 mg. I'm pretty happy with that. Ultimately my moods should get stable enough on carbamazepine that I'll be able to come off venlafaxine (Efexor XL) altogether, which should do me the power of good as it's known to provoke rapid-cycling moodswings in people with cyclothymia or bipolar II.

My blood test results were staggeringly normal - all of the blood count and liver enzymes are great. Weirdly, my TSH is down - to 4.94 uIU/mL. I've got to say, that surprises me - I've been feeling so fat and sluggish all winter that I was sure I was hypothyroid. Just low-level depression, then. Huh. I mean, it's good if my thyroid is mostly doing what it should be (although that's seriously on the high side of normal), but I'm surprised. Maybe need to up the amount of vitamins I take or find a vegan omega fatty acid supplement, or something.

Now I need to stay awake for the rest of the day and get something useful done. This will be tricky given the 2 hours of sleep I had and the fact my bed is calling to me, but if I stay awake now I might have a chance of getting my sleep patterns a bit more sorted out.

It's very pleasing when someone who knows far more than you about a subject comes to the same conclusion that you did, independently of your thoughts. It's happened to me a couple of times lately, most recently this evening when I saw my doctor and he agreed that I should increase the dose of carbamazepine that I'm on from 400 to 600mg per day. I think it's more sensible than going back onto a higher dose of Efexor (venlafaxine) because:

a) I spent the summer trying to reduce my venlafaxine dose, and got it from 225 to 75 mg before I started to experience symptoms again.

b) What's wrong now is mood lability and instability. I'm depressed on and off but I'm also hyper on and off, and having "attacks" of crying for an hour and a half with no trigger when I don't actually feel sad. A mood stabiliser seems like a more sensible option to try to level that out than an antidepressant, which will just make any hypomania worse.

Unfortunately as usual he was running excessively late (my appointment time was 6.50pm and I got seen at 7.35pm), and so I completely forgot to tell him about all the possible thyroid issues that I'm still having. Tired all the time, cold a lot of the time, even worse temperature regulation than usual, hair falling out so much more than usual (I'm actually alarmed by the amount of hair that's on my pillow in the mornings), putting on weight despite eating less than usual. I meant to ask whether I should have another blood test, not least of all because carbamazepine is known to affect the results of thyroid hormone screening, and it could be useful to see the results pre- and post- changing the dose. Damn. And looking at this list of possible hypothyroidism symptoms - yep, definitely having a lot more joint problems than is usual for me, and ( TMI ). I suppose I should phone him, as he's only doing physical appointments on Tuesdays now, and I only need to talk about it. Bah!

Have now seen doctor. I was Sensible and Assertive and told the gatekeeper receptionist that it really was very urgent that I saw my doctor, because I was severely anxious and had been hanging on since last week and I wasn't sure how much longer I could go on coping by myself. As usual he was running extremely late but I sat in the waiting room with no brain and read the issue of OK that was all about the death of Jade Goody. Apparently Katie Holmes and Tom Cruise are having another baby. And it is scary when Jordan poses in her underwear with her children in the same shot.

Anyway, he decided that a lot of my problems would be fixed if only I could get enough sleep, so prescribed a short course of zopiclone, warning me that it was highly addictive etc etc. When I got home and looked it up I wasn't terribly convinced that it would work, being a "Z drug" - I still remember the time in my second year at university when I was so unable to sleep that I was randomly passing out all over the place, including in lectures and one time in lab (!!), and went to the useless doctor [1] there for some help. She prescribed zolpidem (Ambien), which did nothing - I was routinely still awake 5 hours after taking it, and I eventually looked up the maximum safe dose on the internet and took that, without success. 

Well, I took the zopiclone last night and to my extreme surprise it worked. I feel a bit fuzzy in the head and still a bit sleepy, but rested and a lot less anxious. No dreams about aeroplanes crashing, to take the example of the night before. Hopefully it will continue to work until the end of my exams, and after that I'll be in enough of a sleep pattern that I'll be able to keep going.

Also, I sent the following email to P, who teaches the biological chemistry course which features natural products and drugs: ( Read more... ) Seriously, I feel all clever now!

Why do I not have a userpic with me raising one eyebrow? I'll have to fix that sometime.

[1] a.k.a. the doctor who told me "If Prozac doesn't help then you're not chemically depressed".