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.
Someone’s pushed me too far.
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
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.
Our friend, and for many of us, more, is in hospital. They’re a multiple system that some of us have relationships with some of them. It’s complicated!
They had a wound in their foot which was stitched up. The very next day they ripped out the stitches, and left the wound open for a week, so of course it got infected. Cue the ambulance and a stay in hospital. They started acting really odd and paranoid and kinda delusional while they were there, and ended up signing out AMA. Did I mention that we were back and forward from the hozzie coz the nurses kept calling us to go in and calm them down?
2 days later, we’re on the phone, and realise they’re not making any sense. Totally confused, paranoid, thinking people have guns and are coming for them. So again, we call them an ambulance and stay on the phone for an hour waiting for it to come. They had to wait for police backup coz our friend has a history of being abusive and aggressive. They get rushed in, and the docs think the infection has spread and is making them act this way. We think different.
Turns out we were right. They did scans and lumbar punctures and tests, and the infection hadn’t spread. Instead, it’s a psychotic break, and they need psych care. We go in to visit, and they don’t recognise us much, and are spewing hate and vitriol at us, hitting all of our weak points and triggers. So they recognised us enough, I reckon.
They’re still there, waiting for a psych bed, as far as we know. The poor nurses. Our friend is raging delusional, thinks the nurses are trying to kill them, and are wandering through the ward, bursting into the other patient’s rooms and screaming at them. They now have a dedicated nurse with them all the time.
We’re angry coz we’ve been begging them to get psych care for 6 years, and they’ve always blown us off and attacked us for even daring to think that. They always have to be right, you see. It hurts to know that we were right, and to be hurt because we dared to say something. We’ve been hurt so many times over the years by them, but we stayed coz we care. So yeah, we’re angry that all that hurt could have been avoided, if only they didn’t have the burning need to always be right about everything.
And we’re worried about them, coz we care. We don’t know if they’ll be the same people when this is under control. Will those of us with partners there still have them? Or will we be left, alone. We don’t know. We can only hope.
It’s a bad situation all round, it really is.
The sun is shining, birds are singing, and all is well with the world! Bad night is over, good times ahead! Thanks for caring folks, I’ve got the warm fuzzies 🙂 Hugs for everyone! Cuddles for someone 😉
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? 😉
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?
Sometimes it all gets too much, y’know?
It’s hard to make them, specially when you’re an inside bloke in a female body. People see the body, and that’s it. Sure, we have friends, but they’re either Nick’s or all of ours collectively, coz they don’t know about us all being here! That’s cool and all, but sometimes we feel like it’d be nice to have friends who know we exist, and want to be friends with us individually. That’s even harder, coz our natural instinct is to stay hidden.
But now, I have a friend! And what’s more, he’s an inside bloke in a female body too, so he totally gets it! Do you know how fucking rare that is? To find someone like me who wants to be friends? Friends with me. You have no idea how cool this is! It’s early days yet, but I get a buzz every time he emails me! I HAVE A FRIEND!!! And he’s super awesome lol
Ok, enough with the sappy shit. I just really felt the need to get that out there! I’ll go do manly things for a while now lol
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Focusing on disability, benefits, and sharing my experiences of COPD, heart failure/aortic valve calcification & stenosis, ME/CFS (27 years), and, latterly, bilateral lymphoedema and cellulitis (foul conditions that cause me more pain and misery than everything else combined), plus general disability and mobility issues and advice, in the hope they will help others, along with books, cooking, and anything else that piques my interest... Please note: This theme was selected for its overall clarity, but many items are greyed out until you hover the cursor over them including, annoyingly, the photo below.