Dunno where this is going, but…

This might make sense, there’s even a remote chance there’ll be pearls of wisdom in here, but don’t hold your breath. It’s more likely to be stream-of-consciousness crap.

It’s been a while so I doubt there’s anyone left to read this, but that’s ok. We haven’t been here to comment or support anyone, so that’s fair.

Our friend has been in hospital since January. In and out, bouncing between the medical hospital and the psych hospital. They’ve had a total breakdown. They spent a week on a respirator in ICU coz they won’t take their meds coz they think they’re poison. They’re refusing to let us visit, or even talk on the phone. They’re refusing to talk to their mum, and she’s 88 and lives in the US and is worried sick. It hurts to be rejected like this. Some of us have relationships with some of them, but now we don’t know if that’s true anymore. Left hanging. It hurts bad. Saddest of all is the cold, dead spot that’s growing where the love used to be. We can only take so much, and they’ve been pretty terrible to us for years. We feel like we’re losing them, already lost them, and we’re losing the will to care. That should break our heart, but somehow it’s just a hollow ache of no-more.

Life is hell sometimes.

Our shrink changed our psych meds. We’ve come off Zyprexa and changed to Seroquel. The plus side is we’ve lost 21lbs. The downside is that it doesn’t seem to keep us emotionally level like the Z did. We’re having highs and lows again, and we’re struggling to cope. Badly.  But after 4 years of being level, the lows are horrific. We’re a turtle in a shell, able to peek out at the world, but incapable of interacting with it. It’s too much. It feels like crushing pressure, and we hate that. We like interacting with our friends. We miss you, all of you.

Especially Jaime, a faint voice whispers. Soft, broken sobbing is heard, then fades away.

We start psychotherapy soon, and that terrifies us. Telling a stranger how we feel, what we think… Who We Are. That we’re here, we’re real, we exist. No no no, that’s all wrong, oh no. Back in the shell, denial denial.

We’re in constant pain now. We don’t see the colo-rectal surgeon till October. October. In 24/7 pain, can’t sit, even lying down hurts. Let’s not talk about the fear of needing the bathroom. Burning, stabbing pain that never ends. And months to wait for surgery. Don’t think we can cope for that long. Pain makes a person crazy out of their minds. We’re crying a lot.

Everything seems like it’s spiraling out of control, like a plane falling from the sky, trailing plumes of smoke and fire in it’s wake. Will we eject before it hits the ground, or will we be paste on the runway. We can’t find the eject button. Oh gods, where is it. The g-force is crushing our chest, it’s so hard to breathe. Don’t wanna write this, don’t wanna say. Wear the mask and pretend we’re good, like always. Don’t be a burden. Ever.

안녕  annyeong

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Hospital today – *shudder*

We have an appointment later this afternoon with a specialist at the hospital. We originally saw a consultant surgeon, but he decided it was too comples for him so we got referred upwards. The specialist has to decide what type of surgery is best for us, and will have the least chance of complications. This is all because of long-term complications of our stomach and bowel issues.

If anyone ever says external haemorrhoids are nothing, just something to be laughed at and joked about, I’m here to tell them they’re a fucking idiot. They’re excruciatingly painful. Yes, we are having surgery to remove them, hopefully, but there’s a risk of damage to the muscles which could cause us permanent damage. Laugh that off, you fuckers.

Blaine

Of hibernation and hedgehogs

Good Morrow to you, oh wonderful handful of people who actually read here! I realise that a post from us is probably a huge shock, so sit yourselves down and take a few deep breaths. The weirdness of it will soon pass. I think.

Between the beginnings of the winter depression, the infection of the kidneys, the struggle to find housing, and the psychotic friend, it’s been a bit of a rollercoaster ride, with far too many big drops. There has been much curling up in bed, plenty of sleep disruption, and a probably-not-healthy amount of mindless games playing. The dissociation gets much worse during the winter months, and we have no idea why. It probably means we’re a hedgehog, and have a primal need to hibernate. Or something. Meh.

So. Winter feels unsafe. And yes, this is really strange, because emotionally, we love winter. Wild weather, storms, snow, it’s all good. But physically, we feel unsafe. Edgy. Miserable. The anxiety skyrockets, the panic attacks multiply, and we have an overwhelming urge to be in hospital. Medical hospital, not psych. Like we’re expecting something bad to happen to us physically. Considering the long list of serious medical conditions we live with, this isn’t a totally irrational fear. But why always in the winter? Most of our medical hospitalisations have been in the summer, as we have lousy heat tolerance and heat makes us very ill. Yet something about the nights drawing in, the darker days, it makes everything seem dangerous, scary, unsafe. So we dissociate, not consciously, but obviously in an effort to escape whatever it is.

There are so many horrible things in our past, yet I remember them all. But this, I don’t know. And that scares me.

-Nick

I’m not well, so I’m gonna moan!

Stupid body is playing us up again. We have periods of remission, where we don’t feel too bad, but even then, our version of not too bad would probably put most people in the hospital! We’re just used to it now. But when the body relapses, it’s hell on earth.

We feel dreadful. We’re so weak it’s pathetic, we have no energy, we’re physically shaky coz our muscles don’t work, and we can’t breathe very well. Oh, and every time we eat it’s like being stabbed in the stomach with a pointy stick. Pain levels are spiking up pretty high.  We’re also dizzy and lightheaded as fuck, which makes sitting up a trial. All of this combines to make the depression and anxiety rise to crippling levels, and all we want to do is curl up in bed and whimper. As it is, the only reason we can get out of bed is that we have a recliner chair in front of the computer downstairs, so we can recline, surrounded by pillows. It just feels like the body is shutting down on us, and there’s nothing we can do about it but hope it doesn’t.

Most of the littles are refusing to come out, and who could blame them? A lot of the adults who were around in 2002 are staying inside too. That was the year we fell ill so badly, and we were bedbound for 12 months, sure we were slowly dying. Turns out we probably were. Pancreatitis, liver failure and emergency surgery will do that to a person. It took us forever to get back on our feet. Feeling like that again will trigger a lot of people to run for the hills.

There was this one ward of our local hospital that always treated us good. We were in and out of there at least once a week, for months. They knew us, and looked after us, and we felt safe there. I keep finding myself lying in bed, longing to just go back there again. Thing is, there’s no going back. The hospital was knocked down and rebuilt a couple of years ago. So I’m longing for a safe place that doesn’t exist anymore. That makes me sad.

On top of all of this, we’re losing our house, and we’ve just found out that the local housing authority won’t rehouse us until this place is actually sold. So we have to physically be homeless, with the kids, before they’ll help us. We’re seeing the Homeless Team today to see if there’s anything they can do for us. Potential homelessness is fucking terrifying. Stress makes the M.E. worse too, which isn’t helping. We could be out on the streets in less than 4 months time. How the hell are we supposed to deal with that?

*sigh*

Sometimes it all gets too much, y’know?

Thunder and Lightening

The levels of anxiety Inside aren’t letting up at all. I wish the bloody DSN (Diabetic Specialist Nurse) would hurry up and call us back. Our Blood Sugar levels are terrifying. I mean, they’re supposed to be under 10, and we’re running in the mid to high 20s. Scary shit.

Since it’s summer, the Inside world is having warm summer days, (well, the northern parts are!) with balmy summer nights. But because the anxiety is so high, there are thunderstorms every night. No rain, just thunder rumbling away. Because, like, thunder’s calming for us. It always has been. We used to sit at the windows and just watch, wishing for louder thunderclaps and more lightening, and just losing ourselves in the storm. Wild weather’s always touched our hearts in strange ways.

Maybe it’s coz the weather reflects the Inner turmoil. I don’t know. But I know it helps. So we have nightly thunderstorms Inside!

Anyways, we have zero concentration, and can’t even do things we love, like read, for any length of time. It sucks. So, I’m off to play some mindless games on t’net. Oh, and make tea. I’m English, of course there has to be tea. Can’t survive a crisis without tea.

Bethanie