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.

Advertisements

Impending loss, and how to fail at coping

Fair warning. There’s some depressing shit in this post.

First off, we can’t go through writing some of this stuff again, so we’re copying the post we had to put up on Fb to let Lex’s friends know what was going on. Real names have been changed to protect privacy.

Hello to all of you who are Lex’s friends. I’m sorry it’s been so long, but some things have happened that have been very difficult to cope with, and updating has been far from my mind.

At the time that Lex made her last posts here, she was suffering from a form of psychosis. It’s not 100% clear what the cause was. It caused her to stop taking all of her medication, including her psych meds, and her kidney medication. The upshot of this resulted in her spending some time in the ICU on a ventilator and having dialysis, as her kidneys were not functioning and the weight of the retained fluids were pressing on her chest.

Unfortunately, the blood poisoning caused by her kidneys not functioning worsened the psychosis, causing her to believe that me and her mother were trying to harm her, and she refused to allow me to visit or call her. It’s taken months of dialysis to reverse the blood poisoning and psychosis, but it has, and she is now psychosis-free, thank the goddess. Unfortunately, the time spent without her kidney medication has caused her kidneys to fail, and she now needs dialysis three times a week.

Lex is now living in a care home, and is having dialysis three times a week. Sadly, the dialysis leaves her feeling quite ill, even though it is keeping her alive. This has been such a struggle for her, and she is very worn out. As she cannot accept a transplant due to personal reasons, she knows that this struggle has no discernible ending.

I find the next parts to be incredibly difficult to write, so please forgive me if I struggle to find the words.

Lex has decided that she cannot go on like this, and has made the decision to stop the dialysis, and let nature take it’s course. She has thought long and hard about this, and has talked with me and her mother about it. As much as it saddens us, and we wish it was otherwise, it is ultimately Lex’s life, and it is hers to live, or to leave. We will support her in every way we can, and stay with her to the end. Once she stops the dialysis, she has less than a month.

Our hearts are broken. I talk to Lex’s mother, every week, and we are supporting each other so that we can be there for Lex without breaking down. It is so very hard. 

Lex is currently putting her legal affairs in order, and is giving me Power of Attorney, so that I can carry out her final wishes, both legal and medical, in the way that she wants. I hope you will support me, as I do what I must.

Thank you all for being her friends. I know she treasures each and every one of you. Please, don’t forget her. She is a very special person, and she should be remembered with love and affection.

I’ll do my best to let you know how things are going, so please check back here from time to time.

With a heavy heart, and many tears shed

Nick

So. Our friend is going to die. Soon. That’s incomprehensible to us. I mean, they’re only 52, we should have years of time yet, right. But, we don’t. That future we all thought we had… wiped out. Gone. How can that be?

13 years of close friendship, more than friendship for some, comes to this. It’s beyond devastating. We’re beyond devastated. Except we’re mostly numb. It’s too big, too much, to feel. We can’t go there. We can feel the cracks, see the fractures, know that we’re slowly, inexorably, shattering, shard by shard. The worst is yet to come.

Lex is also Multiple. Some of us have long-standing relationships with some of them. There are families being torn apart, kids losing parents, partners losing partners. Never to hear their voices again. Numb.

They want us to introject them into us, but we don’t think we can. It’s not the same. They speak with a voice that isn’t ours, think with a brain that isn’t ours, they are not us. Introjected, they would be a shadow of themselves, and that would be like being haunted by the loss of who they really are, never-ending reminders of the pain. Can’t face that. Numb.

This has been an ongoing struggle for over a year now, fighting to get them to accept help, to accept that something was wrong, to make the doctors and hospitals see how serious the situation was. It took them ending up in ICU for the doctors and psych docs to see how badly they needed help, and to finally start taking us seriously. By that time, it was too late. Too damn late. FUCK. We were exhausted a year ago. Now, we’re just flat-out finished off. Our own health has suffered, badly. The sheer emotional stress has physically crippled us. We have nothing left to give.

Yet we have to keep giving. Lex need emotional support. Lex’s mother is 89 and lives alone in the US, and needs us too. We have a Partner and kids who need us. We’re running on empty, we have no reserves left, where is all this strength supposed to come from? We don’t know, but we have no choice but to keep going. We’re very afraid of the price we’re going to pay for all of this, mentally, emotionally, and physically.

We really miss being here, with you, our friends. We miss reading your blogs, hearing your words, sharing life with you all. We want so badly to be able to be there for you, to support you, to be with you. In our hearts, we always will be. For now, all we can do is hope that’s enough.

We love you, our friends. 

Ethan

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

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

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