Hundredaire

Right, a recap of a really shitty month. Dear reader, I petition you to remember whilst reading this whole post that at the best of times I feel like an unnatural mistake and a crime against nature.

 

First – The good; A long ride out to Selby in the cold, haring along the A63 on my beloved little 125, to meet the EN500; My prospective new bike. It’s good – A handsome old machine, with a high-revving parallel twin engine, a belt drive, and a very comfortable riding position. This one comes with a touring screen, a USB hookup, panniers, a tool roll (full of tools) and a sparkly custom paint job (In Kawasaki purplish-black pearl). Of course, I bought it on the spot. Riding back in the pitch black on twisty, unlit roads, watching the frost forming a halo around the moon was a tonic for the soul.

 

6th of December was my bike test – Failed, with technically zero faults, which I consider to be a sign that I was doing rather well. Only clocked 48kmph on the hazard avoidance – I needed to do it at 49kmph. Considering that this was in deep fog, with the ground green and slippy with moss and ice, I think that I did the sensible thing in taking the course more slowly than I would on a bright summer’s day, really. Next attempt, 17th of January.

 

After that, me, my instructor M, and his wife AM, all went out to Selby in the van to pick up the EN500. It’s now safely ensconced in the bike office, basically until I pass my test.

 

About three days after this, and two days before I was due to go home for Christmas, I got a migraine. Not just an ordinary, two-days-and-it’s-done migraine, but a full-on seven day nightmare. For the first four days, I couldn’t tolerate any light; Literally, even with my hands over my eyes, and the curtains shut, at night I was still screaming that it was too bright. By day three, I was still vomiting after so much as a sip of cordial, and it was only day six before I could stand up without getting so dizzy that I fell straight over again. This, by the way, is with Zomig, morphine, and a couple of over-the-counter anti-nausea pills. Without Zomig, I assume I’d have just killed myself.

 

And then yesterday was physio. The first driver picked me up at 10am, which was where the issues started. Before reaching the ringroad she had;

 

  • Nearly crashed twice at roundabouts, as she seemed to think that priority was to the LEFT, and had seriously jarred my back both times.
  • Decided to opine at length about how I should stop taking my meds and start taking turmeric instead
  • Told me about her haemorroids, describing them as “Pain so bad [I] could never understand it”
  • Explained at length about how everyone with a mental illness was just workshy and grifting.
  • Told me about three tragic cases of beautiful young people she’d taken to hospital who had awful conditions that she had to pray for.
  • Touched my leg four times.
  • Insisted on manhandling me and my bags, really hurting my knee in the process.

Upon reaching the motorway, she drove for most of the way on the hard shoulder, or in the crawler lane, and my attempts at sleeping for most of the journey were wrecked by her veering around in the lane – Not changing lanes suddenly, just being unable to follow the lane or maintain a steady speed.

 

We got to the hospital anyway, and she insisted on checking me in, giving a load of spurious requirements to the receptionist (No, I do not need my bags carrying, or a wheelchair, and if I did, I would ask for myself, ta), and then hugging me (I froze) as she left.

 

Physio itself went well – three new exercises, and just still not being patronised or blamed, which is an incredible victory in itself. Today was with Physio HH again, who is basically my main physio now, and was working on my hips and lower back.

 

The exercises (Since I’m keeping track here)

 

  1. Lie on back, knees bent about a foot apart, feet also about a foot apart. Close eyes. Keeping one leg upright, slowly lower the other leg out sideways, then pick it back up.
  2. Lie on side, ankles together,knees bent at about 90 degrees (as if in a chair) – Slowly pick up top knee, to about six inches off the bottom knee, then lower it back down.
  3. Sit on a balance ball, bouncing slightly (for core strength)
  4. Sit on a balance ball arching and curving back, whilst staying upright – This is also how we found that my left leg is shorter than my right, and I’ve got a functional scoliosis.

On the way out, I ran into Physio T, who seemed both really happy to see me, and also really worried that she’d been meant to see me that day, and had missed me. She was surprised that I’d not been in inpatient rehab in the month in the middle, since our last appointment, but also seems to think that I’ll do well once I’m in it.

 

That’s the other thing – Inpatient rehab; Aka, the fabled Stanmore Programme. There’s two versions of it, the hotel version and the hospital version, and for obvious reasons I’d rather do the hotel version. It’d just be conducted by physios, H was very certain to advise me that there’d be no nurses on-hand, thus no care shift – But then, in the real world, I don’t exactly have nurses on-hand all the time either.

 

The journey home was fine, even if I did have a two hour wait for patient transport, and only got back at 10pm. Nine hours of travelling, two hours of waiting, and an hour of physio. Seems like a great use of time.

 

The trouble is, well, my mental health. It’s not exactly great right now, it’s stable, but it’s stable at a low ebb – Nothing seems worth doing, up to and including things like “getting dressed” or “washing”, and stuff like putting on clothes more complicated than just bike leathers or surplus is so terrifying that I go into paroxysms of anxiety for days. Likewise, any kind of socialising – I’ve seen Best Friend a slack handful of times since we were on holiday, and I’m not really spending time with Dearest either. For my own good, I’m not doing Christmas now, but I almost wish that I could have some kind of in-person social interactions with people without finding it hateful and pointless. Not because I feel like I want to, but because I know that’s what “real people” do, and I really do suffer when I’m feeling more aware of persistently feeling like I’m not real, or not equivalent to a “proper person”. Failing repeated tests on a technicality, failing my degree, ending up in non-standard NHS treatment because my local trust don’t think I’m worth treating, being very socially isolated by a combination of awkwardness, reluctance and circumstance (today I rang up a client, for free, and chatted for an hour because I had nothing better to do), and having a job that relies on being able to be a very good liar/actor/cold-reader, atop a childhood of feeling like a mistake, an exception-to-a-rule, an outsider and an ersatz substitute for being with “real people” makes for a distinct sense of being not-a-real-person. It’s probably no coincidence that I’m happiest and feel most like myself when I’m entirely alone and hard to physically pick out from the next person; ie, either on my bike and in my leathers, or swimming and underwater.

 

It’s not exactly rocket science that I’m plagued with suicidal ideation at the minute either. I’m watching TV and generally numbing myself out with morphine and lacework, but it’s there in my head and I’m having a bit of a shitty time making it stay shut up. Ah well, not long to longest night, and then with any hope, I’ll be on the way up into Spring.

 

 

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Loop

So, today I got an email informing me that tomorrow’s tutorial was on the second floor of a building that had no lifts and that I know from experience has heavy doors all over it. It’s also about a quarter of a mile away from the registration point for the tutorial, uphill, and across a busy road.

The email include the flippant line;

” We are very busy tomorrow and you have no students with mobility issues (assuming I haven’t missed anyone!) which is why you are across the road from the [Main Venue]  You will have to get there now via the [Very Far Away] building – this is because the side entrance facing the [Building Where You Register] is having a refurb, reopening in January 2016.”

Oh, thank you, admin person. Thank you for saying “Unless I’ve missed anyone!” at the last minute, instead of asking at the start of the week, in an email that I recieved right at the close of office hours, when it was just slightly too late to kick up a fuss about it. And, indeed, where tomorrow I’ll have to set off so early that I won’t be able to phone ahead to get the room changed, because the university won’t be open.

I mean, it’s not like you could have asked the disabled students’ office to check with me if I had any mobility issues, or even just to take a wild guess that a disabled student with multiple named conditions might have mobility trouble.

Pretty sure that this actually falls foul of the Equalities Act. Also fairly certain that I don’t have the stamina to protest it.

There’s only four tutorials per year, and now I’m going to miss the first one. No way whatsoever that I might have found it useful, anyway, what with my executive function issues and my complete lack of confidence in this course, and my needing a fairly close rapport with tutors in order to get work done.

So, that’s my academic year off to a blinding start. Not to mention that I’ve been in a horrible state for much of the week, have self harmed more than I’m comfortable with, and am probably going to miss next week’s Sisters Of Mercy gig because I’m too panicky.

Assortment

Two medical-related phone calls yesterday. This is basically me settling in for Winter, when my physical and mental health both go from bad to worse – I take about twice as much pain relief and antispasmodics in winter as I do in summer, my sleep pattern goes to pieces, I eat less often and less well, usually coinciding with my guts slowing down, and I get much more upsetting and graphic suicidal thoughts, not to mention the increase in self-harm for both pain-relief and mental-illness related reasons.

The first was to Rheumatology, to find out what was going on with Stanmore and what was in the letter that had been sent to the GP.

First is the bad news – It looks like I’m having to arrange that Stanmore referral myself, since once again it’s gone around the full cycle of “Nope, nobody knows what it is, or when, or where, or anything.” without making any progress. So I have no idea how to do that, or even if I can do that. By the original reckoning though, it’s three months overdue, which is starting to get ridiculous. I’ve been told to “Just chase them up” with both my GP and Stanmore, which as far as I can tell basically means nothing.

(On this note – Anyone who has any experience in following up referrals, how does one do it? I’ve in-theory got letters from my GP, Rheumy and UCLH Hypermobility all saying that I need to be referred to Stanmore, and all of the above claim to have sent letters to Stanmore to refer me as well, multiple times. So other than just turning up at Stanmore with a suitcase, what do I do next?)

Then is the worse news – The letter that was supposed to say “Plesae give this patient more diazepam” instead says “Thank you for giving them a small amount of diazepam”. These are not the same sentiment, at all.

So I nearly went into my GPs practise and looked like a drug-seeking liar, because I would have said “Dr D said to give me more diazepam” and they would have read the letter and said “No, he didn’t”.

So I’ve booked an appointment with my GP for the 8th, at 16.50, and I had the strangest exchange with the receptionist whilst doing so.

“Who’s it with?” I asked, basically just checking that it wasn’t with Dr Rh, who I personally consider to be not-a-doctor and more like a stale breadcake in a suit.

“It’s with Dr [Name unclear]”

“Who?”

“The Lady Doctor”

Happy at least that this precluded it being with Dr Rh, I hung up. But this baffled me. Of the people in this practice, I’ve got a clear mental picture of about half a dozen of them. Dr Rh is, as I’ve said before, a winnet with legs, Dr Ch is sympathetic and keeps a casual eye on my mental health, Dr R is viscerally horrified by my dislocations but willing to work with me to hack the most efficient possible use of my medication and the system, Dr L is great for mental health but scared of the drugs that I take, Nurse Practitioner Rs is a lovely person and technically very competent, but knows when she’s stumped and isn’t too proud to refer me up the tree when needed. And I don’t think I’ve ever sorted these people by sex. In fact, I can’t think of any situation where I’ve used “Does this person have matching genitals with me?” as a selection criterion.

This is probably all complicated by the fact that I’ve barely ever socialised with people who are the same gender as myself. I don’t seem to consistently feel a gender in the same way as most people do (Though for about three months near the start of this year I felt much more definitely “man!” than usual, which was weird. I usually just use it as a shorthand for “I am a fairly masculine person” or “Most people consider me to be masculine”) so I don’t have that immediate sense of solidarity with people for being the same gender as me that a lot of people seem to get – Especially in fields which are skewed in the direction that makes them a minority (For example, women in physics, men in childcare, etc).

But anyway, that’s all by the by. I’m seeing a doctor on the 8th, it’s about my sleep pattern, and I think it’s a doctor that I’ve not met before, so this could be really complicated.

Threes

This has been a horrible, horrible week.

Over the past ten days I’ve nearly drowned (Blacked out in the water at the pool, fished out still-unconscious by lifeguard, couldn’t get right leg or lower spine to support me, had to get ferried home in the car by Dearest), nearly gone under an HGV (See the long post about the bike) and on Friday, after my dog had spent half an hour screaming every time he tried to move, requiring him to go to the vet for an emergency consultation, I was bluntly told that he probably had terminal bone cancer. From that point on I’d been so worried about him that I barely stopped crying all weekend, and haven’t wanted to talk to anyone about him, for fear of jinxing him.

Well, today (Tuesday) I found out that he didn’t- Despite all the howling and painful noises, he’s just got a soft tissue injury from climbing over the wall to my downhill neighbour’s house too many times. This is a massive weight off my mind, and has basically blasted the horror of the last week away into nothingness, since now I’m just so relieved that he’s all right. It’s no exaggeration to say he’s my best friend. He’s certainly the only person I’d ever get a matching tattoo with (Within a year of getting him, I had the racing number that’s stamped in his ear tattooed onto the back of my knee, at about the same height as he is).

Better than that, the vet today said that he was in remarkably good shape for his age, and not showing any of the signs of decrepitude that she’d have expected.

So here’s to things looking up.

Hopefully, the problems of last week will now be repaired in reverse order – My bike will be returned to me, preferably in one piece, and then by the end of the week I should be swimming again, even though I now kind of don’t want to because it’s just too embarrassing. I’ve also just made some enquiries about getting fabric for winter clothes (I think I deserve some fully-lined wool trousers) and have bought another parcel of norgies (A norwegian-style heavyweight shirt from the army-navy shop). And the fire is lit, so at least the living room is warm – it was down to six degrees in the bedroom last night, which is about the limit of my tolerance before I start wearing a nightshirt and piling on the wooly blankets and extra sheepskins.

So far, the judicious use of Best Friend’s old light therapy unit, along with the sun simulator generously bought for me by a forum friend, along with absolute comfort literature (The Harry Potter books, Discworld and Sergei Lukyanenko’s Night Watch series all do an amazing job of making Autumn not seem like a terrifying spiral of dizzying golden light that ends in an anxiety attack…) seem to be keeping the worst of the seasonal stuff at bay, so other than the horrible sense of anticipation and the clinical knowledge that I’m reacting poorly to stress as compared to in the middle of summer, I’m doing all right. Another friend is fighting the seasons by going for a very long walk in the hills, and I’m both glittering with envy and plotting how I can bolt off to find somewhere remote and green and rainy in the next few weeks.

Physically, I’ve been too wound-up to even understand that I have a body very much since Thursday. I imagine that tomorrow I’ll wake up and find that I’ve got a lot of dislocations that I’d not noticed, or at least that I’ve got not-all-that-mysterious sore muscles and knackered joints. But that’s tomorrow’s problem. Tonight, everything is fine.

Seasonal, part deux

It’s about the time of year where, usually, I’d start getting a massive boost of energy – The days are getting longer, I can hear actual birdsong outside, the snow has basically cleared – And thus I’m in the horrible elastic bit of time where I can feel myself getting more energetic, but my mood hasn’t lifted at all.

There are two times of the year when I’m at the greatest risk for self-harm of the uncontrolled, not-just-a-couple-of-scalpel-cuts-as-a-painkiller kind; The very end of summer, sort of late August, early September, and the very start of spring, usually around Febraury. I am, possibly understandably, concerned that I am about to start doing so again. Today I had an anxiety attack that lasted from abut 09.00-14.00, and which took a fair bit of concentration to remind myself that it was just an anxiety attack – That I didn’t always feel this awful, and that suicide wasn’t a solution. When I’m in an episode of extremely poor mental health, thoughts like this can happen a lot, and I’ve acted on them before (More luck than judgment that I’m still around).

So I’m keeping an eye on myself – I’ve got more reasons than usual to want to stop existing this year (More pain, less achievment, less invested in society, less hope for the future) but I’ve managed to live this long, so I may as well keep going.

Probably worth a swim tonight, to get me out of the house.

Less tangent, more suet.

So the last few weeks have been stressful. Starts with the psycho costume furore, goes on the the Samaritans’ Radar, via a massive bout of self-harm, a long hard look at whether surviving that suicide attempt in September was a good thing (Jury is currently out), a massive wobble in which I’ve been hiding from my best friend, and reopening my complaint against RLMP with the health ombudsman, after that paramedic’s phone call got me a phone call from a doctor who said… Wait for it… “Phone back tomorrow morning and book an appointment, this doesn’t sound urgent”. My issue was “All of my muscles are in spasm, I’ve run out of diazepam, my mental health has gone through ‘fragile’ into ‘nonexistent’, I’ve not slept for more than three hours at a stretch since early October and not had a night without exhausting nightmares since the 15th, and my whole life is ruled by pain, exhaustion and trying to avoid really permanently damaging myself”.

So, at 5.30pm on the 30th, after I’d smashed a few glasses and opened a few veins, I walked off into the rain and registered at a new GP. Who gave me an appointment for yesterday, the 3rd. I waited less than a week. I asked for the appointment at about 6mp, and not only did they have appointments left, but they could also book me in for a follow-up in a month if it was going to be needed, and a new-patient-appointment with a nurse on the 11th.

At the appointment, I repeated the complaint above. And I got a pretty decent response. My new GP, Dr AC, seems a bit worried about addiction (“I’m worried about prescribing you diazepam, since it’s addictive” rather than “I’m worried about prescribing you diazepam, since it gets less effective over time etc”) and can’t tell the difference between non-prescription and herbal medicine (Diphenydramine isn’t herbal. Not herbal at all) but she’s noted my mental ill-health, respects that I don’t need anything right now, and has carried forward all of my old scripts. Plus, she looks a lot like my best friend from sixth form, and graduated from my old University (Where I also worked in the medical school!) and that gets my vote.

And now, apparently, I’m crawling back into insomnia again. Welcome to autumn.

Normal service resumed

And finally this morning a letter arrived in the post from the Community Pain Team, talking about their waiting list for psychotherapy/CBT for pain (Yes, that waiting list that I’ve been on since before this blog started).

No, it’s not a letter saying “You are now definitely getting an appointment, here’s the date!” it’s a letter saying “Please ring us and tell us if you still want to be on this waiting list.”

Yes, I do still want to be on this waiting list. I am currently on a LOT of ambiguously long waiting lists;

CBT for pain

Specialist surgeon, hips

Physiotherapy, hands

Physiotherapy, general

Getting a pre-A+E checklist

Stanmore

And that’s just the ones I can remember.

Some sort of psychotherapy will definitely do me good. This week has been lost in a blur of nothingness and self-harm and feeling guilty about needing to be cared for. Disturbingly, non-suicidal self harm seems to temporarily numb the pain I’m experiencing in my joints. I don’t want it to be my coping mechanism. I need to work on it. My seasonal issues are in full-swing right now (The clocks go back tonight, so this isn’t a shock. It’s still sad.) Very difficult reminding myself that I want to be alive right now.

In other news – My disability bus pass has arrived, and thus I’ve got my council card to get cheap swimming (£2.20 per session now, to spend forty-five minutes to an hour in the local pool, which never has more than about seven people in it, and is never less than a pleasant 30 degrees (written as 86 Fahrenheit on its ancient pool thermometer). For two nights a week, I swim lengths in the open sessions, and as the lanes begin to empty near the end of the hours, I begin to walk instead of swimming, slowing down and working harder, the water taking most of my weight and making falls an inconvenience rather than a nightmare, reminding my back how to carry my weight and my knees how to progress without buckling. After that, when I get out, I shake for hours and need morphine to get as far as wrapping myself in a towel. On a Sunday afternoon, I either spend forty five minutes being privately coached in technique on the four main strokes, or share the pool with at most three other people. On a Friday night, the lane ropes are taken out, and I have the chance to float gently or turn cartwheels in four-metre-deep water. I’ve been going regularly since Spring, and I can feel myself getting better. I still can’t walk on land, and I’m getting no closer to that, but my hundred metre freestyle is creeping down below the 1-minute mark, and I’m looking fitter again. I may be horribly underweight and never more than ten feet from enough morphine to kill myself, but my shoulders and thighs are looking fuller, and my stomach and back radiate clean heat when I curl up in bed after a long swim.

And the final bit of news, I suppose, is that my disability benefits have arrived. I was awarded higher rate for both mobility and home living, meaning that in the eyes of the government I am a very, very ill pigeon. And I can use that to pay for the things that I need most to make my life worthwhile – First, better bedding and better lighting (An electric blanket and a SAD light of my own), then a cleaner and possibly a carer, cheap and edible food, and, absolutely definitely, taxi fares to go places. To meet my friends. To go to the pub. To get to the fifty-metre international pool outside the city and absolutely cane it.

And an old friend from Before has got in touch, which is bizarrely reminding me that I am still me, despite feeling like an empty shell nowadays.