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?
baratron: (aibo)
Last night I dreamt that I was a werewolf and that my father was the Alpha of our pack, that he got kidnapped and I had to invoke the magic of the pack to rescue him. So far, not very surprising - I've been reading my way through Patricia Briggs' modern urban fantasy series again. But why was my father Nick Clegg?


I did not win NaNoWriMo. Actually, I barely wrote anything. Actually, I've barely been writing anything, anywhere. My new friend from Elder Scrolls Online was sad that I hadn't added her to my livejournal friends list yet and I said "I haven't written anything friends-only recently!". Not enough coherent brain to finish all the half-written stuff flapping around the place. Literally all I've written recently is a description of all my ESO characters and a writeup of an ESO Guild event.


I am sad about Lemmy and David Bowie's deaths, and very sad about Alan Rickman. With Lemmy and Bowie, I'm sad for my friends who were fans of them and for all the musicians I know who were influenced by them. Whereas I was actually a big fan of Alan Rickman myself. We watched Galaxy Quest at the weekend, mostly because we couldn't find the Dogma DVD in the mess that is our house. Fuck cancer all round, anyway.


My mattress is completely knackered, so I am waking up most days with extreme back pain and sometimes back and hip pain together. Woo. We have ordered a new one but it's going to take 8-10 weeks to arrive, since apparently companies don't keep "super kingsize" (6 foot/180 cm) mattresses in stock. Don't even ask how much it's costing. Dunlopillo latex beds for people who are allergic to dust mites are Not Cheap. We tried lying on Tempur mattresses (which are even more expensive) but found them very weird and far too soft. I thought I might like them if I had a pain issue where it hurt for me to be in contact with the mattress, but as it is I roll over far too many times to be on a mattress which completely contours to me, and fighting the mattress would simply make my back hurt more.

In related news, I have been back to the Pain Management Clinic. There is nothing wrong with my hip (which I suspected anyway) and they are going to do some more facet joint injections into my evil sacro-illiac joint. I look forward to being in less pain soon.


Shifty is coming to visit me on 8th February for two weeks! Yay!
baratron: (Warning: Sick!)
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...?
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: (endurance)
So... I have received a hospital appointment letter for a course of physiotherapy, the first session of which clashes with the Graduate Symposium where I am supposed to be presenting a poster.

It is 4 consecutive weeks and you have to go to all 4. It runs from Thursday 18th June until Thursday 9th July, meaning that if I call back and say "I can't go", the next session is unlikely to be until Thursday 16th July. And that's if the physiotherapist isn't on holiday.

It wouldn't be so bad if it was in the morning, but it's 3.15-4.15pm. Ordinarily, this would be great - I'm always complaining about appointments from the Pain Clinic in the morning considering how brain-dead most people with chronic pain are at stupid o'clock. However, while I don't have the timetable for the Graduate Symposium yet, every year I've been aware of, the poster session has been on Thursday afternoon.

The timetable has not yet been printed or distributed. I pretty much have to be at the poster presentation (rather than just sticking my poster up and running away) since answering questions about one's poster is part of the assessment process. Even though I am never going to win any prizes because I'm a chemist in a biology department, and the likelihood is that I won't even be able to answer half the questions I get asked!

I have, for now, emailed my supervisor.

I assume the next step is emailing the conference organiser to check when the poster session will actually be, and calling the hospital to find out if they have any other times sooner than 16th July.

What other bright ideas can you think of? Sympathy also welcomed.
baratron: (corrosive)
I do not recommend arthritis of the spine. I don't really recommend arthritis in general, but there's something about having it in your spine that's just extra evil.

I had some injections done in January which basically fixed the problem entirely for a few months. Over the past few weeks, I have become increasingly aware of it returning in force. Yesterday things were so bad that I had to miss a lecture that I wanted to go to, because I hurt too much to be able to sit through the class without having to wriggle and fidget and stand up and change position so frequently that it would disrupt everyone else. Normal painkillers do nothing for this type of pain.

Now I don't know what to do. I have been to my Pain Management F/Up appointment, which lasted all of 10 minutes because the specialist and I were in complete agreement that I needed another set of injections. But the Pain Management Clinic admin are completely useless and gods only know when that'll actually get scheduled. I could go back on gabapentin, but I'm afraid to lose my mood control. I've actually been feeling pretty cheery over the past month or so, still a person with depression and anxiety but with those issues mostly under control, and I'm extremely reluctant to give that up.

Then again, if I'm in this much pain and discomfort, I'm not going to be able to get my work finished off because I can't actually sit still for long enough. And my department have made it very clear that I'm not getting any more extensions.

This is the kind of juggling that you have to do if you have multiple chronic illnesses which interact. No one wants to be in constant pain, but no one wants to turn into a crazy person either. Better pain control vs worse mood control is not really a good equation.

I shall, of course, be consulting a medical professional at the earliest possible opportunity. I'm not really looking for advice, because none of you have my biochemistry, or are taking my particular mix of medication. But I certainly need *hugs* and comforting pats over the internet.

Hmm.

Aug. 7th, 2014 04:28 pm
baratron: (introspection)
Also, I am "impressed" that I just wrote a rant about my uterus instead of spending the energy on:
(a) writing up what I did at BiCon
(b) writing down the list of books I've read recently and what I thought about them
(c ) writing down the list of bands I've seen recently and ditto
(d) anything else of social or political importance.

I'm sure this says something. I'm just not sure WHAT.

Ow.

Apr. 10th, 2014 08:18 pm
baratron: (corrosive)
Today I have period pain and it's bad, so I am whining.

I also have knee pain and wrist pain because Richard is in Canada again and I'm having to do a lot more for myself. My wrist support makes the inside of my wrist itch, but my wrist is agony without it. So I've had to cover the inside of my wrist with an antibacterial cream, then attempt to put a dressing over it, then attempt to wrap a wrist support around, all one-handed. Also the first-aid supplies in this house need replacing, and "sensitive" latex-free plasters barely stick at the best of times - let alone over cream and when they are a couple of years old!

I hurt so much and I am valiantly struggling to do work, despite the pain and despite my mother talking to me even when she can see there are spectra on the screen and a notebook in front of me, but I might have to give up soon because this is just ridiculous.

Also I need to type a long post requesting help for a friend, but that isn't going to happen with my wrist in this state.
baratron: (Warning: Sick!)
Haven't found time to update for a few days.

We're now staying in Montréal until Saturday 16th February, and flying home that night. I'd been hoping to get to Toronto to see my alt.poly friends there, but Richard now has to work until Friday. The combination of snow and a heavy electric wheelchair makes it too impractical for me to travel alone, and it's far more hassle than it's worth to lug all our stuff to another city for only one day. I'm sad about that because there are a number of people in Toronto who I really like and don't see often enough, but at least [livejournal.com profile] epi_lj and [livejournal.com profile] clawfoot should be passing through London in May on their way to Paris.

We saw [livejournal.com profile] papersky on Saturday, which was lovely - the first time we've met up in over a decade. Put it this way, when we last met in person, her son was 9, and he's now 23. She provided a place to stay for Richard & I on our very first holiday together. We had virtually no money, and got some sort of young person bus/rail pass which allowed us to travel around South Wales for a week. We stayed with Jo in Swansea, and with some other alt.poly people in Cardiff, and in a dodgy B&B in Merthyr Tydfil in between the two. It was one of the most educational trips in my life, and I could expand upon it at length, though it would make me cry - since I am a person who cries with most strong emotions. I should do so sometime, when I have spare time for writing.

Today I am Ill. It's nothing serious, only period pain. It will pass with time and hormone levels. But right now, I can't get out of bed. It's partly my fault - yesterday, I lost my stash of painkillers and opted to continue with our plans rather than run around looking for a pharmacy. After shopping for tools and a printer and TV for Richard's work, we went to the Jardin Botanique and looked at many strange and wonderful plants in greenhouses. Then I completely lost my temper because of pain and had to be placated with Maple Toffee Popcorn (like normal toffee popcorn only made with maple syrup, and amazingly without animal content), and ended up spending an hour sitting in a Second Cup watching curling on the TV because I was too ill to move, waiting for my painkillers to kick in. I still do not understand why the yellow team was throwing the red stones and vice-versa, nor why Alberta was playing "Canada". If it was Team Canada from the Winter Olympics, why aren't they in Sochi? Very confused about that.

I wrote all of the stuff above before Richard's laptop decided it was out of battery, hours ago, and now I hurt too much to carry on. More tomorrow, when I will hopefully hurt less.
baratron: (dino)
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.

Not coping

Jan. 9th, 2014 06:38 pm
baratron: (introspection)
I am very, very stressed.

My husband is being sent to Canada next week and we still don't know when. It's "only" 3 or 4 days, but he is my full-time carer, and it's hard for me to manage without him.

And after I sent a slightly passive-aggressive letter to the Pain Management Clinic at Kingston Hospital, they phoned me at 8.30 this morning to say they'd completely run out of capacity, but I could go to Queen Mary's in Roehampton to get my back fixed. Kingston Hospital is 10 minutes walk from my house, whereas Queen Mary's is 25 minutes on a bus. The appointment is for 1.30pm on Saturday 18th January.

I am now having a minor panic attack because I have a really bad hospital phobia, so it is extremely non-trivial for me to go somewhere that I don't know. Also, what I'm having done to my back counts as "surgery", which is freaking me out even more.

Also, I have had period pain FROM HELL for 3 days, which is also reducing my ability to cope. I am also about 2 months behind with my academic work, since I have been too ill to think since 3rd December. I thought I'd be well enough to get going on Tuesday, then the period pain started, meaning I've had to dope myself up to the eyeballs (and STILL HURT).

Fortunately, I am seeing my Disability Mentor (a.k.a. mental health professional) tomorrow. Nonetheless, I could do with expressions of sympathy, and offers of people to help me out with finding food next week.
baratron: (introspection)
Today at 2.10 pm I have an appointment at Kingston Hospital slight TMI ) to try to find out whether I have an ovarian cyst, or what. I am hoping for something obvious and not scary. Best wishes would be appreciated.

[livejournal.com profile] nitoda is coming with me. I am glad that someone is, since I am still somewhat phobic of the hospital.
baratron: (face only)
'Cos three things make a post, right? (This is actually four).

[21:41] My ovary (or whatever) is really flippin' hurting again. I want to know when i'm supposed to be getting it scanned.

[22:53] I used the Hyperbole & a Half Pain Scale to determine if I needed to take my ovary to hospital. I decided it was about a "5", as in "Why is this happening to me??". It's not time to get it prodded in A&E until it's up to a 6 or 7 (I'm pretty sure I have to be crying with pain before it's worth going to the hospital in the middle of the night). I seriously need to chase up that scan though.


[01:49] I don't mind molecules with a whole load of different names, but it gets positively insulting when there are a whole load of NUMBERING schemes. Geldanamycin is case in point - what IUPAC thinks is carbon 19 is what people using the old/ biochemistry/ natural product name think is carbon 17. Given that the IUPAC name is hideous then referring to it as geldanamycin makes sense - but it gets ever so confusing when you have names of derivatives based on adding and removing groups from carbon 17 - when the "official" name calls that carbon 19!

And I've just found a molecule (Radicicol) that can be numbered from 1-18 consecutively OR from 1-6 (round the benzene ring) and then from 1' to 12' (round the rest of it).

Mind you, if you ever want to have a fit of the vapours, try looking up the official IUPAC name for plain old glucose.


[04:25] Gods, the weather here has been VILE for HOURS. Driving wind and rain non-stop since about 9pm (it's now nearly 4.30 am)


[04:39] Did I mention that I'm wearing a pair of Richard's socks? The stupid boy was supposed to get my socks out of the washing machine & pair them & hang them on the line on FRIDAY. Today, I went downstairs with a load of dirty sheets and found them all still in the machine, smelling really revolting since they'd been damp since Friday. So I've had to rewash them, which meant I was completely out of clean socks.

Richard's socks are horrible & scratchy, & make my feet itch.
baratron: (Buttercup)
I'm trying to work. My possible ovarian cyst is hurting like holy hell again. Why is it such a git? Haven't received any letters about it yet, so no sign of when I'm going to get a scan done. And, to add further insult, the cervical smear test I had done was "unreadable" and I have to go again in January. ARGH!

I seriously think the number of women I know who have problems at some point during menstruation and/or reproduction far exceeds the number of women I know whose girly bits do everything they should & nothing they shouldn't for forty years. (Honestly, I think I know one woman who has no pain at all during periods, had a comfortable pregnancy, and gave birth easily. I'm sure that everyone else I know has had problems with at least one of those three).

I swear the whole female reproductive system is badly designed.

Argh.

Nov. 21st, 2011 09:04 pm
baratron: (introspection)
Blargh. Today I was VERY BRAVE and went to get a cervical smear test done. For various reasons, including having A Thing about having the same doctor see me with and without clothes, and liking to see an actual gynaecologist, I go to a Well Woman/Family Planning clinic somewhere other than my usual GP surgery. I should have gone in July or August, but the clinic is only open on Monday and Tuesday nights - which has made it rather hard to get there "in the middle of the month".

Anyway, while I was there I got my girly bits prodded to find out whether the pain which I've been attributing to "my evil left ovary" is indeed gynaecological. And apparently it might be fibroids or a cyst of some sort and I need to get referred for a scan. OH JOY.

This is just not a thing I need right now/at all, given that I'm having a generally stressful few months and also have medical phobia. I've managed to overcome my fear of Kingston Hospital to the point where I can go there for blood tests or urgent treatment in A&E, but there are certain things that I'm still absolutely terrified of. Do Not Want.

Then again, given that endometrial cancer runs in my family, I'd have to be stupid to let my phobia stop me from getting a diagnosis - in case it is something serious.

Argh! Why this? Why now? Why can't my evil left ovary just stop being evil?

I know that if it's a benign ovarian cyst it has a reasonable chance of getting reabsorbed of its own accord, so it is pointless worrying too much in advance of more information - but if I could rationalise things like that, I wouldn't have a medical phobia!

blergh

Dec. 7th, 2010 06:10 pm
baratron: (Warning: Sick!)
Ergh. I feel really ill. Not only are my back, legs and uterus all being evil, but my dear old gall bladder's decided to get in on the action as well. I have spent the weekend eating painkillers.

Today I went to college and threw up thanks to the gall bladder, who is evil uterus's best friend. (When one hurts, so does the other). Have now eaten a couple of oranges and drunk some fruit tea (no fat!) and am sitting in the British Library trying to work. Will consider it a good day if I don't pass out or throw up again.

*grumble*

Dec. 3rd, 2010 07:48 pm
baratron: (corrosive)
Dear uterus,

Please fuck off. Now is not a good time for pain. Have literature report to do. Thanks!

No love,
h-l (who came into London today without a supply of dihydrocodeine).

SNOW!

Nov. 30th, 2010 08:29 am
baratron: (what's this?)
HOLY CRAP, IT'S SNOWING!

And the snow's settling :)

I hope this'll get some of the wretched humidity out of the air, so those of us with joint problems will be in a bit less pain. My back would really appreciate that.
baratron: (flasks)
I meant to get up early & go to the library today. But when the alarm went off, my back was hurting too much for me to stop being horizontal. In retrospect, what I should have done was take painkillers at that point.

I tend to resist taking painkillers unless it's absolutely necessary. Problem is, I'm not all that good at telling if it's absolutely necessary. Period pain? Yes, it doesn't go away by itself. If I leave it I'll be in screaming agony for three days. Back pain? Well, sometimes just lying down clears it. Sometimes a hot shower's enough.

Now it is 10 hours after my alarm went off the first time, and my back still hurts. I have taken painkillers, am sitting in my "special" orthopedic, back-supporting chair, and my back still hurts. Gods damn it.

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