New bed!

I’m getting a new bed on Monday! I absolutely cannot wait. My old one is past it, lots of the slats are broken, and the mattress… well, the less said the better. Painful.

My new one is only a single, but that’s perfect for me. It’s a good one, a divan, with memory foam on the top of a really deep mattress. I’m so looking forward to a good nights sleep, and to waking up without serious pain. Sounds like sheer bliss!

More will be said once I’ve had my first sleepie on it.

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.

R.I.P. Ron

I know I’m late, but I just found out that one of my favourite bloggers has died. Ron hadn’t been at all well for a long time, and he was badly let down by those health professionals who were supposed to help him. Still, he blogged relentlessly, everything from disability rights and politics, to wonderful recipes, and so much more besides. He had a brilliant mind, and such a turn of phrase, that every post was a brilliant read.

Rest in peace Ron. May you finally be in a place of no pain, and of peace. You are missed.

https://ronsrants.wordpress.com/

Creativity

So, my creativity seems to have kick-started again. I’ve been pottering around in Paint Shop Pro for the past couple of weeks, getting used to it again. I used to do graphic work a few years ago, but with the depression getting bad, I lost that spark. Now it’s back.

Just for the hell of it, I’ve opened stores on Zazzle, CafePress and Spreadshirt. Lots of products with exclusive designs by l’il old me! Links will pe on a page up at the top, called shops. Clever, huh?!

Now, I’m not posting this as an advert, and I’m not going to beg you to buy stuff. The whole point is that my spark is back, and I’m creating again. And this make me happy.

Time machine please…

I think I did something stupid.

I shared my real name with someone.

No reciprocation, not even acknowledgement.

I feel unsafe now. I wish I didn’t. I do trust this person, it’s just… I don’t feel safe. It’s only the second time I’ve done this, and it meant a lot to me. I don’t know how to handle this. Do I ask the person why? Do I let it go? If I let it go, will the unsafe feelings stop in time? If I ask why it’s been ignored, will I create bad feelings with this person? I don’t know.

I wish I’d kept my mouth shut.

goodbye…

see the decay
love, life, rotting away
caged dream turning to dust in front of our eyes
gaping hole of silent terror
soundless pain yet we hear
pleading eyes beg for release
reaching hands beckon closer, closer, contact please
a touch, a meeting of skin
human contact denied

©DarkPhoenix 2014

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