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.

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 ext_890197 and 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 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?

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...?

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.

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.

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 epi_lj and clawfoot should be passing through London in May on their way to Paris.

We saw 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.

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.

'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.

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!

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).