I’m back!

Did ya miss me?!

Been in hospital for a little while. I even spent my birthday inpatient, which wasn’t fun, but it wasn’t too bad. I made some new friends, who I’m still in contact with, and a couple of the girls on the ward even bought me cards and prezzies! Good friends.

I’m still in a fair bit of pain, and they still don’t know what’s causing it, but that’s par for the cause. On the plus side, I’m finally on a decent insulin regime, so I should be seeing results from that soon, which is a relief.

It’s nice to be home.

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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

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

Flu jab time

So, it’s flu season. We’re in the at risk group, so we get offered the flu jab every year. We’ve also had the pneumonia jab, which is good. This year we missed the special clinic our GP runs for the flu jab, but the nurses at the practice are really good, and don’t let us miss out. It was our annual asthma review yesterday, and she checked if we’d had the jab. When we said no, she whipped out a syringe and said she’d do it there and then! How’s that for good medical practice!

The actual asthma review went ok. Our O2 sats are borderline, and our peak flow is pretty low, but she said to keep an eye on it and see how we go. We’re getting a new spacer for our inhaler, and a peak flow meter for us to keep at home.

Now, we’re sitting here with a sore arm, a headache and the cough from hell. But we’re under nurses orders not to get a chest infection, so we’re trying not to! We dreamt last night that our arm went black and we had to go to hospital! I hope that wasn’t a prophetic dream!

Anyways, happy november to you all. Now’s the time to start panicing about Christmas lol

-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

Here we go again…

Y’know, I’m so tired of being sick, I really am. It’s winter (already!) and the season of the flu bug, and we catch them all. That’s what comes of having a totally shot immune system. P and the kids will get a cold, we’ll get flu. It’s annoying.
Spent last night sleeping in 20 minute stretches, waking up all the time for no reason, so we felt like we’d had no sleep at all. Went back to bed about 11am, and things started to get nasty. Burning up, cold sweats, can’t breathe, everything aches and hurts, nausea, wanting to barf despite taking anti-emetics, so much pain, and the nightmares, oh fuck, the nightmares. Finally crawled out of bed a couple of hours ago, feeling like death, and we still can’t shake the damn nightmares, except I guess they’re daymares now.

Abject misery, blind terror and stuck in flashback hell. Again.We can cope with most triggers, but not this, not feeling this ill.

*closes eyes* This too will pass, this too will pass, this too will pass…

By all the gods, let this get better soon.

-Blaine

ugh we was so sik las nite

we got treeted to a macdonalds las nite an it was nice an it took us ages to eat. den we feeld so sik after, it was horribl. we didnt frow up but we wanned to coz we feeld so horribl an it hurted a lot too.its not nice wen u eat sumfin yummy an den it hurts ur tummy. in fact it suks. we was gonna play on r ipad but we didnt coz it was too scary to be out. dat suks too. i jus wanna feel beter, is dat so much to ask? frowin my hands up in dispair.

susie