Hell part 5: Huh?

‘Twitching, stuttering, leg stuff, mood swings. Hands. Sensory overload. Stuff.’

I’m rehearsing my list of complaints, shorter than the ever expanding list I give my GP, different to the list I’ve been repeating to gynaecology the last few months, a more polished version of the list I’ve given different neurology specialists over the years.

I’m a little more hopeful in this waiting room, partly due to having a lot more confidence in myself than I did at fifteen, part confidence in the neurology centre I’ve now been sent to. It seems by the time you’ve been referred here, you may not have a name for your condition but you know what you’re doing with it.

At this point I’ve spent the past thirteen years being referred to different specialists in different places, all of whom have come to the conclusion that that my various twitches, tics, flailing limbs and assorted nightmares have been due to my anxiety.

Last week I was cleared by gynaecology, given the standard ‘stress can affect us all in weird ways’ ramble, and sent back to my GP with a prescription that she seemed mildly horrified by, and resolved to write a strongly worded letter about back to the consultant, who it seemed barely glanced at my history.

‘We’re still waiting on your neurology referral, yes? See. These pills. They’re not significantly risky in themselves …but they are a significantly higher risk if you have a history of migraines. So let’s not do that.’

Yikes.

I remember the specialist who, after lecturing me on not trying hard enough with the CBT, put me on the pills that had me walking into traffic and cackling at nothing. He did warn that I might get fat. And that my twitch might move to my face, but other than that…
Other than that, madness.

So still bleeding I was told to hang in there until my neurology appointment, and sent off for a blood test. Monday morning I get a call from neurology offering a last minute appointment for the next day. Monday afternoon I get a call from the GP’s office asking me to book a second blood test.

Tuesday afternoon I meet the neurologist.
‘So, while it is all in your head, it’s obviously affecting you in a very real way, and that’s what we need to untangle.’

I’m slightly confused. Is that…did I win? Is that a result? I’m clutching a list of the recent horrifying ailments, bracing for a confrontation, psyching myself up to calmly insist that I know anxiety is a factor, the point is I would like it to stop manifesting the way it does, and be able to live my life.

Did he just make this point before I did?

Yes. Yes he did.

He said this after referring back to the letter sent by my GP, talking me through it, talking through my history, asking me for more detail on my history and what I’m worried about now. He looked at my legs. He walked me through various coordination tests. He asked more questions.

He assured me again that it was likely nothing physically wrong, but that the symptoms I’m experiencing are real and we can do something about them.

And then sent me for another blood test.

This morning I went to the second of the GP’s blood tests to have my arms scratched, stabbed, and punched into coughing up a last sample. I am a pin cushion. But I am getting somewhere.

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Memory/Madness

When I was twenty, I went into my second year of university and a shared house with a group of friends. I refer to this as the year I joined a cult.

Over the ten months or so we lived together, I was accused of doing and saying terrible things, pushed into staying in my room, while punished for not spending enough time with my housemates. Any objections I had were put down to my anxiety, a loose grip on reality, and various other mental conditions they took upon themselves to diagnose.

I am a difficult person to live with. I know this. I live with myself, and I’m a pain, let’s be honest. But by the time I moved back to my parents’ home, I was convinced I was a monster. You tell someone they’re a terrible person enough times, they’ll start to believe it. Question their sanity enough, and they may start questioning themselves, until they can never quite trust their own version of events.

It can take some time to untangle such experiences, and they can affect you in some odd ways. They can make you paranoid, make you extra careful, more guarded, make you question everything.

Or if you’re a stubborn jackass you can go the other way, insist you’re over it and immune to manipulation and it’s fine, ok? It’s all fine, and you’re so determined to be the most normal person ever and so untroubled by the whole mess that you walk right into another and stay there for the next three or four years.

Yeah, it happens. It happened. I made a friend and took that long to realise that the severe anxiety and dread and confusion he triggered in me were not normal. As in the year of the cult, I was accused of things I somehow couldn’t remember, words were twisted, I was a confidante one moment, and a stranger the next. I never knew where I stood, which version of him I was going to see, which version of me he was expecting, and after a while I began to lose track.

At some point I realised something wasn’t right, but I still clung to the confusion. I could figure this out, I could fix this! I could fix everything!!

Of course I couldn’t. And of course I couldn’t challenge him, any real challenges were met with rage, or worse, silence, and of course that wouldn’t do- I needed him on my side to prove how NORMAL I was!

But the need for normal, or what had become normal, eventually gave way to exhaustion and one night I confronted him. It did not go down well. It was a very long and unpleasant and shouty evening. More accusations, more confusion.

And then I don’t know what happened. I have a memory of the rest of the night. I don’t trust it. I don’t want to trust it. But questioning one memory just brings more questions.

Some memories stay with you and guide you, stop you from falling into familiar traps. Some just sit there, while becoming a part of your identity, are ultimately just another story. There are the memories that wait to attack you out of absolutely nowhere and beat you into a crying wreck when you’re just trying to make a damn cup of tea.

Then there are the ones that quietly ask, what if? What if they were right? What if you did say those things? What if you were that monster?

What if you can’t trust your own mind?

Plans are dumb. Gimme.

I was recently encouraged (‘Ok, what the fuck, Kate?’) to examine my various insecurities and anxieties around making plans. (‘Are we doing this? Thursday, right? I can maybe do Friday if I move stuff around, how’s Wednesday? Give me a day. A day!’)

Many years ago, when first dealing with anxiety, I would regularly lose a day sitting perfectly still, unable to move from my bed until I’d run through my options for the day, considering every possible outcome of every possible decision, forming backup plans within back up plans until night fell and I’d have to admit defeat, reset, and hope to wake a little more decisive in the morning. More recently this has applied to other issues, helping me miss several deadlines wondering whether the job was really right for me right now, whether it would fit in with any of the other hypothetical projects I was stalling on actually applying for. So with writing, unsure if this is the script I should be working on right now, should I be looking at submissions, pushing the plays I’ve miraculously finished, or should I be blogging, should I be journaling, or working on that other whatever. Somehow even reading is tangled in this process- ok, but will I learn anything from this book? How does it fit in to the other stuff? Ok this one kinda fits in with that one script I’m working on, research, yes! But then this one makes more of a point about the thing that started the whole, no, I need a break, here’s a good light read, but is it too light? Shouldn’t I be challenging myself? Ok I’ll just sit and look at nothing, that’s good too.

I’ve found ways of dealing with the every day. Lists! Lists of things I need to achieve in a week, jobs to apply for, people to respond to, appointments to make. Then lists for a day, which may involve one or more of these tasks, as well as simple things like showering.
But of course life happens and you have to adjust the things you were planning to do, make swaps, because let’s face it, all the plans you’ve made so far are lying in the gutter because who the hell told you you were allowed a dream? Fuck your dreams, you want to act? Been getting back on your feet after the whole medication disaster? Oh, you’ve got an audition with a good company this week? It’s a movement workshop, that’s great! Fuck you, you’re on the ground, get those crutches out of storage and hobble on home, loser.

Where am I ?

Yeah so I’m beginning to accept that you don’t know what’s going to happen in life, leading to the new strategy of making things up as I go along. Pick a thing, go do that thing! It’s brought some good experiences, some spontaneous get togethers, some good writing progress, some jobs applied for that I’d previously considered impossible. It’s also brought several days of poor hygiene, because showering doesn’t always occur in the moment. Eating garbage because going grocery shopping isn’t as appealing an idea as going for a swim right NOW! Falling behind with my CBT work, which, yes, with practice over time has become a more natural process, but every now and then you do need to sit down, look at where you are, flag up any problems and find a way to deal with them. That, or you end up over thinking whether or not to have a damn shower.

There’s a balance to be found. I hope. I hope I can find some middle ground between endlessly trying to predict and plan what I’m doing every minute of every damn day so I have a chance of actually achieving any of it, and just winging it and hoping for the best. Neither strategy is working right now.

And it bleeds into how I interact with other people, and it shouldn’t, but it just does. When it comes to making plans with fellow humans, I know they’re dealing with much the same thing, on whatever level. Life is weird all round. I know this, and I know it’s best to roll with it and be grateful for the moments I find. However. As much as I struggle to, I still feel the need to pin things down sometimes.

Maybe it’s the practical considerations. I need to factor in rest time, to do whatever else needs done that week, and ensure I have enough energy left. Maybe it’s comforting, in moments of uncertainty when life is a little more chaotic than normal, to know that if nothing else, at some point you will see a face, and have a conversation, and forget about all the decisions and plans and problems and just be in a damn moment.
Maybe it’s some hideous clawing demon made of all my past pain and present insecurities and confusion and feelings of helplessness just screaming for attention that must be destroyed at any cost.

Who can say for sure?

I am The Loris

Hi doc, how’s it…Oh yeah, the cane. Yeah, got that when the joint stuff really started to flare up, it’s pretty cool actually, see how it folds and…My joints? Yeah pretty good, why do you- oh shit the cane, yeah that’s…ok so basically I’m like, they’re not, like, working, my legs aren’t working so well, so. Like at all. Some days. Sudden muscle weakness!

Sudden muscle weakness, is what I’m dealing with.

Different to the anxiety induced fainting spells of uni (yeah no I never fully understood that either), the creaky joints that have been improving in recent months on the new exercise programme (whodathunk?), and the weakness brought on by ‘oh good Christ will these cramps never end’ days/weeks/months (refer to posts marked ‘Hell’). Some days, out of nowhere, my legs just stop working, and I’m on the floor. Clear headed, apart from an initial panic at the sensation of suddenly losing sensation, and annoyed at the disruption to my day.

How am I handling this, you ask?

Well, it’s a process, people, it’s all a process. Like anxiety, like life, you find ways through, of accepting your limitations, so on and so on.

For instance, two weeks ago I found myself crawling around the flat at 6am, getting ready for work, considering ways of balancing a coffee tray with a set of crutches before admitting defeat and calling in sick. The next week I lurched around the cafe for a couple of hours before collapsing in the staff room, wondering how best to summon help, and how up to date we were on the pest control checks. On Sunday, feeling a now familiar pins and needles shooting in out of the blue, I asked a manager to help me to a table where I sat considering every damn doctor’s appointment and scan and exam and pill I’d taken up to this point and where the hell this would lead next.
And politely fending off customer requests to fetch the wifi password, without getting too deep into the whole ‘I might not be able to walk’ thing.

‘Oh. So the password is…’
‘Just by the counter there.’
‘Over…where?’
‘Right just there, sir.’
‘Oh. All…that…ways…away?’
‘Right exactly where you’re pointing sir, yes.’
‘I guess I’ll…go over there and…get…it…myself…’

Safe travels, sir.

A little while before I moved up to Liverpool, a friend and I made a last trip to London Zoo. A farewell to our dream of an unrealistically fabulous and affordable sitcom flat in town, days of drifting about coffee-swilling, smoking, and snarling, and to the animals we’d found comfort in projecting our struggles onto. The meerkat slumped on a mound of dirt, staring glass-eyed at a raincloud, wondering if his degree from St Martin’s was worth the effort. The otter separated from her pals on the other side of the pool, yelping to herself that it doesn’t matter if they ditched her, she’s her own otter god damn it, and ok maybe she shouldn’t place so much importance on outside validation but does it really make her any less of a feminist to crave some kind of reassurance of affection?

And then the loris. Oh how we loved that loris. That loris was everything to us. Wide eyed, a little cautious, a little out of step with the energised, go-getter bats, rats, and what-have-you of the nocturnal section, but determined to find his own way on his own terms.
On this particular visit we found the loris cowering behind leaves, a single arm waving for a branch, reaching for an escape from a photographer tapping on the glass, flashing lights, demanding a picture, demanding an answer, what are you doing, loris? Who are you, loris? Tell me! Now!
The loris could say nothing, the loris could do nothing but retreat, and figure out a way through this intrusion, this disruption to his day…Oh loris. Where are you now?

So I don’t know, is how I’m handling the latest medical nuisance. I don’t know. Right now, I’m just handling it.

Just stories.

Ok so there was this person, in a place. Ok so there were quite a few people around the same sort of time that are also part of the thing, but for now I’m focusing on this person in this place because he’s kind of the main focus of the thing that this is. Yes? And it’s not fair to pin all your stuff onto individuals, when there’s a whole bunch of factors and things and other influences and maybe there’s something about me that makes me vulnerable to this kind of something but in the case of this particular something I’m realising more and more how behaviour patterns I’m still trying to break out of can be traced back to this particular something and it’s a whole mess like, you know?

 

This is how I tell the story, when I tell it. No details. Some details are lost in memory, others hit me out of nowhere at fantastically inappropriate moments. The details aren’t the point, the point is that a particular encounter with a particular person can still have an effect years later. The story is not important, but sometimes, I still feel the need to tell it.

 

Ok so it was a thing, for a while that, to the outside was just some stupid, youth, idiot, all that, but it’s only now that I’m really untangling it and I’m realising that maybe that ‘s exactly how this person designed it to appear so that if I ever did get up the nerve to say anything, no one would believe me. It would be met with, ‘Oh Kate. You old, Kate’. You know?

 

I’ve told myself the story a thousand times, a thousand different ways. In some I’m the victim, in some I’m the bad guy, in some I’m just making a big deal over nothing. Each time I recognise something, some event, some phrase, some pattern that I find myself repeating, and resolve to break once and for all. And of course I stumble, because getting better at anything takes practice.

 

And like maybe it’s nothing, but it’s still rattling around and I can’t help but think, like literally it just comes out of nowhere sometimes and ok so it’s not that big a deal, but to quote Hank Scorpio it’s the little things that make up life, hey that was a good episode, like, seriously good, it’s one I always have to- ok yes I’m changing the subject because…I don’t know. Like. You know?

 

We tell ourselves stories to make sense of the world. I’ve always been a big fan of folklore and superstition, how these stories come about, what they explain, what comfort they offer, how they help us make sense.
You can tell a story and it has a beginning and an end. You can tie up the loose ends, you can have clear characters, motives, reason. You can remind yourself that you’re not a victim, you’re not a monster, you’re not broken.

You’re only human, and it’s only a story.

Not an attack.

My skin is itching. My brain is itching. I can’t scratch my brain. Skull’s in the way.
I try not to scratch my skin. I draw a flower on my wrist. I draw a figure drawing on its wrist on my other wrist.
I wash my wrists.
I stand up. Look around. I sit down again. I need a desk.
I remember the dress that needs ironing, I set up the board. I iron the dress. I burn my finger.
I walk around. I look in the fridge. I make too much toast.
I pick up the guitar, play half of a riff I spent the morning learning, I put the guitar down.
I think about going for a walk. I remember the toast. I look for a coffee cup while eating. I need to be awake. I don’t know why.
I pick up my phone. I put it down. I make coffee and go back to my laptop.
I settle on my bed. I go back to the kitchen for the toast.
I open facebook. I open instagram. I open a job application. I open wordpress. I close facebook.
I pick up my phone. I put down my phone.
I think about going for a walk. Earlier I was using the cane to get to the kitchen. I stand with it. I lean it against the wall.
I settle back on the bed. I drink my coffee. I make lists.

Hell part 4: Hysteroscopy/Biopsy

‘You’ve read the leaflet?’
‘A couple…dozen times.’
‘Oh dear. Sleep much last night?’
‘Er…’
‘Ok Kate. Let’s get this over and done with, shall we?’
She insists that while there will be some discomfort, anytime it becomes too much to handle we stop. It can be rearranged, I can be given drugs, gas, whatever I need. There’s no room for bravery here, I decide my limits.

I’m sent next door to change, and when I come out I find a screen has been put up shielding both doors from the waiting room- no part of this needs an audience, beyond the cluster of women waiting back in the room arranging various gadgets, adjusting screens, guiding me to a bed and helping me into position. It’s strange to me how quickly this has stopped being strange, the only slightly uncomfortable moment being when I stop to rearrange my top, getting tangled in the hospital gown.

From a social awkwardness point of view, this is the only uncomfortable moment. From a physical discomfort point of view what the hell do you expect?

I’m put into position, shuffled down, leant back, suddenly aware of a nurse on my right holding my arm down on the bed, which I’ve unconsciously started gripping. I find this at once vaguely reassuring and unsettling.

The first part is manageable, the manoeuvring of the camera causing a sensation similar to severe period cramps. Not great, but manageable. I’m instructed to keep breathing, distracted by the nurses’ chitchat about working hours, bloody rain hitting again, the joys of a trashy novel on a bad day, until they reach the womb, and a screen is tilted my way and I’m looking at an actual image of my own actual womb. That’s horrifyingly fascinating. I try not to laugh at the commentary -‘so what did you get up to today? oh you know, grabbed a coffee, had a look round the ol’ uterus…’-feeling a little precarious, I’m trying to keep as still as possible.

I’m brought back to focusing on my breathing as the camera is removed, because yikes. Not that they yank it out or anything, but everything about this just feels weird.

‘This is weird. This is so weird. OH BLOODY ow this is weird. ‘

I apologise for wussing out but there’s no need, they say. I’m doing great, they say. They say they get all kinds of reactions, they’ve seen it all man, they’ve had screaming, shouting, whimpering, singing. I should feel free to sing, they say, whatever helps. I don’t feel free to sing but I do take a moment to relax and allow myself to laugh before-

‘Ok Kate, this is the horrible bit, we’re going to take a sample now.’

The start is weird. So weird, a slightly different weird, there’s slightly more pressure on my right arm, there’s smiles all round, there’s soothing, I look around, I breathe, I see some kind of something connected to some kind of tube connected to some kind of mask hanging nearby, just in case, and I’m breathing, and I’m bracing myself.

The pain is hard to describe, and my impulse is to jump back, more pressure on my arm, more soothing, a shout escapes, I can’t help myself, the noise is sharp and the pain is sharp, and then it’s over.

I apologise again, I’m excused again, I’m laughing again, I’m being propped up, carefully. I’m aching, but I’m grinning. They explain what happens next, how long the biopsy results should take, booking my next appointment and insisting I give myself the rest of the day to do nothing.

I leave optimistic, smiling, and absolutely in awe of these women. This is their everyday, and beyond carrying out the exam itself with crazy efficiency, they made a day I’d been dreading feel almost enjoyable, and made sure I left feeling completely reassured and confident that this will be resolved.