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.

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

My eyes! They burn!

They really do! We just had our annual diabetic eye exam. They put these drops in your eyes, and they sting like fuck. Then you sit there for 20 mins while your pupils dilate so much you look like an anime character lol They take photos of the insides and back of your eyes with this seriously bright flash!

The big thing is that the stinging and burning takes 4 hours to wear off *yikes* And until it does, your vision is like blurr-o-vision, and light hurts. Like it feels like you’re being stabbed in the eyeballs. I’m typing half by guesswork and half by knowing where the letters are lol And now I have a headache from my eyes being messed up. Meh.

I need cuddles. Big soppy snuggly cuddles. Any volunteers? 😉

Blaine

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?

New Meds

We has some! We saw the DSN on Monday, and started Victoza. The injections are painless, which is nice. But the side-effects are making themselves known. We’ve had to change up to a stronger anti-nauseant, or we’d be puking our guts up. Still, gotta just push through it. This med’s too important to stop. We need our diabetes to get under control, and this is the med to do it.

The new anti-puke pill is an old-school anti-psychotic. In lower doses, it’s great for nausea and vomiting. Our doc gave us a higher dose than we were expecting though. It’s in the range for anxiety, which is a huge added bonus. Thing is, it’s knocking us out! Between the Stemetil and the Victoza, we’re a huge bundle of dopiness and fatigue. We just want to sleep all the time, and when we’re not sleeping, we’re doped to the gills!

It’s a good thing that we bought some pasta and pizza, because that’s about the limit of P’s cooking skills, and we’re not up to it at all! So at least he can feed the kids! P’s being wonderful though, as usual, and is doing all the things we usually do, so that we can sleep, and wait for the side-effects to wear off. We’d be fucked without him, he’s amazing *wubs*

So here we are, at 4am, while the rest of the house sleeps, watching Wimbledon from yesterday, and drinking fizzy grapefruit juice. With the air-con on coz it’s muggy and horrible. I’m sure I had more to say, but the brain’s shut down on me! I can feel my IQ dropping! I hate that.

Nick

DSN called!

Fucking yes! The DSN just called, finally. She’s wrangled us an appointment for 25th of this month, to start Victoza! Everyone’s boneless with relief, and there’s crying and laughing in the streets. Literally!

One of our biggest triggers is medical neglect. Fuck knows, we’ve been put through enough of it in the past ten years. Doctors who think they know it all have nearly killed us twice, no joke. We’ve had to fight every step of the way to get the meds cocktail we have that works, and to get the diagnoses of things we knew we had, but weren’t believed about. That just freaks us out, the not believing us thing. Ugh.

We have an excellent Medical Team, Inside. They’ve read up on everything possible to do with our conditions, to the point where we know as much as our GP. Hell, even our GP says so! He’s a good guy, our GP, but it’s taken us 10 years to find him *sigh*. Our Medical folk read the British medical journals, own the latest BNF (British National Formulary, the prescribing bible!) and ne’er a drug passes our lips (or anywhere else lol) without being fully researched. Can you tell we don’t trust doctors?

Anyways, time to go listen to early Adam Ant, and grin a lot!

Bethanie