helen-louise's journal

Today is the British General Election, and I am scared shitless.

On a local level, there is a strong chance that I will once again have the overprivileged twit who didn't know what BSL meant (when given the context of "BSL interpreters for disabled people") as my Member of Parliament. I am absolutely horrified that the local Conservative party chose Zac Goldsmith as their candidate for MP, after he resigned from the party and triggered an entirely unnecessary by-election only a few months ago. He claimed it was about blocking the expansion of Heathrow Airport. Well, guess what? The Conservative Government decided to back the expansion of Heathrow Airport! So how can he stand as a Conservative again? Okay, he never ruled out rejoining the Conservatives 'in the future', but five months later is hardly the sort of 'future' that people were expecting when they asked him.

Basically, the man is a self-serving slimeball*. He believes that the reason he lost the by-election in December was because standing as an Independent, he wasn't allowed access to the Conservative Party database of supporters, and Conservative ministers weren't allowed to help him. (Although some non-minister Conservative MPs helped him, including pro-Heathrow expansion friends.) 1871 votes isn't a big margin, and while people might be willing to vote Lib Dem as a protest against Brexit, people who are scared of Jeremy Corbyn as Prime Minister aren't going to risk losing a Conservative seat. Urgh.

*[Since we need some humour to break up the unrelenting grimness, I saw this article in one of the local rags the other day: A huge snake paid an uninvited visit to a home in Kew and immediately texted Richard to ask "Was it Zac Goldsmith?". He replied, "It's a popular misconception that snakes are slimy. Actually, only Tories are slimy." My dear friend Stellarwind pointed out "There's a very distinctive difference. One is a predatory cold-blooded reptile that makes some people very nervous... the other is a snake."]

On a national level, the fact is that the Conservatives hate disabled people. I could link to literally hundreds of articles to prove this, but here's one about mental health, and one about physical disability. That second link should be read by EVERYONE I know except for those who are expecting a PIP assessment soon and can't afford to get triggered.

There's also the absolute mess that Brexit is going to make of our country. I have no training in economics and cannot really argue this point, but I do know that the pound was worth US $1.6 only about a year ago. Now it's more like 1.1. And that isn't because the dollar got a lot stronger, it's because the British economy is collapsing.

I was arguing with an idiot this morning who claimed that "u can look at it as people more incentivised to buy local and your economy will benefit". I replied "'Buy local' means giving up every foodstuff which can't grow in your climate. Goodbye, oranges!". The exchange rate matters A LOT for trade. Even on the most basic level of an individual wanting to shop, it matters. I want a $20 nerdy t-shirt from the US? It used to cost me £12.50. Now it costs me £18.18. (The idiot claimed I should "buy a nerdy UK shirt. this is how you rek your own economy gettin evrythin foreign", and I tried to point out that the specific design I want to purchase is sold by an American company, and then I gave up trying to argue.)

The Conservative government is violently pro hard-Brexit (i.e. a complete split from the EU, removing the right to free movement, withdrawing from the European Court of Human Rights, withdrawing from the European Medicines Agency, etc). I'm a scientist and I'm worried sick about the effect of Brexit on science. I'm also a person with Northern Irish ancestry, and I'm worried sick about the effect of Brexit on the Irish border. These things matter, and it's like a load of little Englander UKIP-voting Brexiteers haven't even thought about them.

And I just can't cope. My mental health has been collapsing ever since this election was called, along with many of my friends'. Richard is kicking himself for not taking up Belgian citizenship when he was still entitled to it. I'm going to be out today working for the Liberal Democrats, trying to make sure that we keep our Sarah and don't let that awful Zac back, but a General Election really isn't the same as a local by-election. And I've been too ill and stressed lately to do more than cheer Richard on as he's delivered leaflets. If we lose by a narrow margin, it's going to feel very personal.

[Leaving this public for now. If any anonymous trolls decide to have a go at me, then I'll close it down. Not in the mood to argue.]

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.

I'm feeling well enough to restart my PhD again this term. Spoke to Philip on Friday about changing my project to something more manageable with my physical limitations, and that actually went remarkably well. I'll write more about it when it's all been approved by the Graduate Committee.

There are various Things to deal with this term: the Graduate Symposium and the Retreat, both of which terrify me. I still don't know how exactly I'm going to get to Mill Hill for something that starts before 10 am, or how I'm going to manage for a whole day in a strange place without anywhere to go and collapse if necessary, but I'll work that out later. The Retreat is in Cambridge and involves an overnight stay, and is no doubt fully catered, which fills me with utter horror. I have a long-term phobia of Other People Controlling My Dietary Intake. It started when I was a teenage vegetarian and people thought I would eat chicken, or chilli with the pieces of meat fished out (eww). It's only got worse as I've developed quite genuine food intolerances. Traces of dairy make me really very unwell in the digestive department for an alarmingly long time.

Perhaps in preparation for this, I am doing something on Wednesday which terrifies me. They picked six random students and invited us to lunch with the visiting speaker at College. I'm not sure if it was random or if they looked for people whose work was vaguely relevant to hers. I wrote back and said that it isn't that I *can't* go, but that I have lots of food intolerances; but apparently there is no prebooked menu, and you can choose anything they sell. So I agreed to go because I've become way too good at avoiding things which make me anxious. At a time of mental health crisis, it's reasonable to avoid extra stress, but in the long term it isn't healthy - you can't get through life by avoidance.

I will no doubt regret this decision multiple times between now and Wednesday afternoon, but what is the actual worst that can happen? That there's nothing I can eat apart from a bit of salad and fruit? No one ever died from missing one meal! I have to keep my fears in perspective.

In other news, I have been emotionally messed up for a while now. For the last couple of weeks I've been suffering from random depression - really, for no reason at all. Random depression sucks, random depression in the middle of summer sucks more, random depression when you have lots of work to do sucks even harder. For me, it's actually easier when there's an underlying reason for the depression, because that's something I can work on. It's much harder when I can't think of anything that's gone wrong.

Except that now I can - I had to go for a blood test on Friday (a blood test that I'd been procrastinating for about six weeks), and it Did Not Go Well, and I have been left with my medical phobia/post-traumatic whatever all stirred up. It wasn't horrendous - I wasn't injured, there's no gory story to relate - it's just that I was as assertive as I could have been under the circumstances, and that wasn't enough. I could have done without adding to my already quite-long list of times when I have clearly stated my needs to a medical professional and they've been ignored :/

And it shows how much I've been quite upset by it that I've been intending to write this post since it actually happened; now it's nearly a week later and I still can't manage details.

To someone without a phobia, the details are not that bad. This isn't the sort of story where anyone reading it would be shocked and horrified. I remember writing about this years ago. I compared having the type of specific medical phobia that I have to arachnophobia, and explaining how fear and bravery are not binary. (The post will be in my "medical phobia" or "triggery stuff" tags - for obvious reasons, I don't want to search for it myself). What happened on Friday was like a moderately small, not-poisonous-to-humans spider on the bedroom ceiling. Not in itself horribly traumatic, not really worth complaining about. But a very unpleasant reminder to a person who has suffered extensive menacing by an entire crate of highly venomous 8-legged nasties.

I wish my old doctor hadn't retired :/ I actually don't trust the new one to mix a better cocktail of psych meds if the current lot aren't working well enough. Godsdamnit.

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!

When I'm depressed, one of my main symptoms is nightmares. All of the anxious thoughts in my subconscious manifest themselves in my sleep, and I have horrible dreams that make me incredibly panicky. ( Read more... )

Today, I feel like crap because I'm still fighting off a cold, and my evil ankle is hurting like hell, and I have ucky period.

I have an evil left ankle because I broke it in a school PE lesson when I was 11, and only found out that it had been broken when I was 18. I have something of a bad history with school PE lessons, all things considered. The accident when I was 11 happened because some teachers were off sick and my class was put into a lesson with another class two years above us. This gave the teacher an overinflated sense of what we were capable of doing, as the older girls were much bigger and stronger. Also, in addition to being generally crap at any kind of sport, I had gone to a junior school that didn't have a gymnasium - so I'd never done gym class before arriving at this school in September. This meant that, by this lesson in January, I'd learned how to do a forward roll and that was about it.

In the lesson, an "assault course" had been set up - boxes, the vaulting horse, and other such things. We had to walk along the narrow side of the benches, which for me is torture because I can't even walk along the wide side without falling off. The lesson was bearable only because I had a couple of friends in the older class, and we could all be crap together. Until... we got to the part where we were asked to do a forward roll over a box that was at my waist-height, with only a very thin polystyrene mat as protection. I tried to get out of doing it - I remember specifically saying to the teacher "I don't know how to do this safely", those exact words - and was forced to do it. Of course, I fell - I genuinely didn't know what I was doing, and it's only because I'd done a term of judo and had learned, at least, how to break my fall that I only injured my ankle and not anything else.

My friend took me up to the San to see the nurse, and she thought it was a bad sprain. I was worried more about the fact that I was supposed to be helping my friend Trudy carry her books after breaking her leg than that I was injured myself. I asked if I should get my mum to drive me to the hospital for an X-ray, and the nurse said there was no point, it was definitely only a sprain. So I strapped it up with Tubigrips, and continued to walk on it.

A few years down the line, I had been diagnosed with a weird, "growing pains" cartilege issue called osteochronditis or Osgood-Schlatter syndrome. For several years, my mother had written a note to the school explaining that I had this condition and was not allowed to do any weight-bearing exercise - explaining that she could get the specialist to write if necessary. When it flared up, it was freaking agony and it was all I could do to walk, let alone run. So I'd "got away" with swimming for PE for ages. In sixth form, we were allowed to swim by ourselves as long as there were a minimum of three girls over 16 present and all our parents had signed permission slips. There were a handful of us who hated sports and would do swimming as a soft option - I figured that, unlike all the competitive sports, swimming was at least useful, as it could save your life if you fell into water. I'd finally had lessons and could swim quite well.

Then, one day, one of the PE teachers decided to take exception to the fact we'd be splashing around with floats and practising lifesaving rather than doing "proper" exercise (!). Apparently we were all "unfit", although I was a UK size 10 at the time and could swim non-stop for 15 minutes. She dragged us all out of the pool and made us attend a step aerobics class. I tried to argue that I wasn't allowed to do anything like that, but again, I was forced. I remember being bright red and unable to breathe, and everything going black - asthma plus bad knees means that step aerobics is a bloody stupid idea. After the lesson, I was in so much pain I could barely get myself back to our study room. It turned out I had completely put out my back - six weeks before my A-level exams were due to start! Yet more freaking X-rays revealed a scoliosis that neither the orthopedic surgeon nor the rheumatologist had bothered to tell us about, even though it was obvious on the X-rays I'd had done aged 15! Plus as a result of the untreated scoliosis, the bottom 3 vertebrae of my spine had fused together, which was how come I'd managed to put my back out. I had to have really intensive physiotherapy to get myself to the point where I could revise, let alone sit through a 3 hour exam - and I now have a spine that is damaged for life. Yay.

I found out about the ankle injury when I went to see a podiatrist recommended by the most excellent physiotherapist. She thought it strange that my knees were still messed up at the age of 18, when I'd finished growing aged 11, and thought that perhaps my gait was contributing to the problem. The podiatrist took one look at my ankle and declared that I'd broken it, and further investigation proved he was right - even I can see that my left ankle is a different shape from my right, and two or three of the bones are in the wrong place. He sorted me out with orthotics, which have improved my walking tremendously - though buying shoes is a nightmare, and one of the reasons why I always wear boots. The others are that my ankle is bad enough that I need the support, and I have to wear shoes that are deep enough to hide the orthotics in. Writing this is reminding me that I really should get some custom orthotics made again rather than relying on the shop-bought ones.

So yes - now you know why I dislike PE teachers, and have a deep resentment of the medical profession. Bad enough that the initial ankle injury got misdiagnosed, but it happens. But you really don't expect two consultants and a GP to entirely overlook something like a twisted spine! Sure, it didn't explain the problem with my knees - but it was a problem they should have told us about!

Today, the ankle pain is bad enough to make me feel like I want to puke, which is... interesting. ( Cut for the squeamish people. )

Have had most of my chosen family around this weekend. alexa_robinson is here. Unfortunately, we're on very different sleep schedules at the moment - I'm doing my usual get up early afternoon, go to bed around sunrise thing, and she's waking up around 2am and going to bed in the late afternoon. So we haven't actually seen that much of each other. Nonetheless, interesting food and cuddles have been achieved.

Today meeping & gerwinium & two plushie foxes & a Hello Kitty disguised as a fox came round, and we went to see Harry Potter & the Goblet of Fire. I liked it - I think it's the best of the HP film adaptations so far. Meanwhile, Richard stayed at home and took great pleasure in having the house to himself to make as many banging, drilling and grinding noises as he wanted to :)

Am in lots of pain. Stupid gallstones. Pleased I managed to haul my arse to the cinema anyway, though. Going to bed in a bit, not to sleep but to lie down, as the pain is a bit less bad if I do that. Saw the doctor on Friday. Obtained drugs and advice. He agrees I have some sort of post-traumatic stress thing going on. We have a Plan to continue with the gallstone-dissolving medicine and see how it goes. The surgeon still hasn't replied to my GP's letter (which I suspect was along the lines of "Dear Joe, WTF have you been doing with my poor patient? Love Mike x") so he's thoroughly unimpressed. I've been very mellow for the past 2 days, partly as a result of the drugs, but mostly because I have been officially Reassured again that what happened wasn't my fault, and I'm not a complete loon for reacting to it the way I did. That helps.

Have slept for 2 nights in a row without nightmares. I hope this continues.

Edit: I forgot to mention that when I walked into the doctor's office, he took one look at me and said "Oh dear. You look really ill.". I was... amused. And also relieved - if a mental health problem is making me look ill then it must be serious enough for me to need help.

And just in case I didn't have enough to deal with: fucking Kingston Hospital has lost the result of my fucking latex allergy test, and wants me to make an appointment for a new one.

Earliest appointment they can offer me even after I explained that I need the result before I can have the operation is... 3rd October. Which means I won't have the result for my pre-op on 6th October. Initially they offered me an appointment in November, and I'm still shaking all over from the thought of having to live with this gall bladder for another month.

I don't even need to see a doctor - they won't do allergy tests on me by skin-prick anymore, due to possible risk of death. All I need is to go in and have someone take some blood from me and send it off to the lab. Why the fuck do I have to wait a month to have that done?

I'm crying and hyperventilating and almost throwing up here from the stress.