He wants his life back.
With PD he thought he was getting it back. No more thrice-weekly trips to the hospital. No more having to watch Not Nice Very Dim eating burgers and crisps whilst guzzling brown pop. No more hours of tedious boredom, with no working tellybox and nurses who ignore him. A working week where he arrived home at a ‘normal’ time, and not some ridiculous hour shortly before the clocks chimed midnight. Even (possibly) being able to drink a little bit more, and not be so strict with his food intake.
But he is Blokey and Life is against him.
(in his woe-is-me moments I hear that a lot)
There are other reasons for wanting PD over haemoD.
He has seen the (often constant) pain that some people (with fistulas) seem to suffer from; he’s heard their screams and watched them cry.
He is desperately afraid of needles.
(but he injects himself in the belly weekly)
He doesn’t want a fistula. I’m not sure if this is because it looks unsightly, or because he associates it with never getting his life back. Or maybe he associates it with pain. I doubt he really knows himself. He (possibly rightly) assumes that if he goes back on haemoD he will be coerced/forced into having one and that simply scares the shit out of him.
With PD he can leave work at the time he’s supposed to leave, and not the hour earlier he has to leave three times a week whilst on haemoD. He really worries about his job (he’s been working for the same company for ten years come August and survived however-many rounds of redundancies). It took him nearly a week to tell his immediate line manager that he was on the transplant list because he thinks that come the next round of redundancies it will be held against him.
But he knew it was only a matter of time, and earlier today he phoned me to say that it’s happened; they’ve thrown in the towel and he has to go back on haemoD immediately (tonight).
I’ll be honest, the first thought that crossed my mind was, But I’ve just been shopping and bought oodles of food! Gah!
(when he’s on haemoD he eats main meals at work three times a week)
Blokey is trying to convince himself that they haven’t done enough. In truth, I don’t think they could have done anymore. And I think he knows that, deep down.
He’s going to be miserable when he gets home tonight and I won’t know what to say to him. Anything I say will be misconstrued. He thinks knows that I gave up on PD a long time before the hospital did. If I suggest that it’s good because he’ll actually get a whole nights sleep (he hasn’t had one since he went on PD) then he’ll twist it in his head so that he understands it to mean I’m glad because I’ll get a good nights sleep.
At least you’ll get your cupboard back! he said to me.
But I’m not fussed about the cupboard. I’m not even fussed about the machine with its whirly-beeps. However much I hated PD (because I knew it wasn’t working and he was more miserable on it than on haemoD) I did love the fact that we got home at about the same time every evening. I loved the chats we had whilst he was doing his manual, and going to bed at the same time (he tends to stay up much later than me) which meant we indulged in more quality time together.
I will be glad to see the back of it because of the exhaustion and the miserableness that it’s caused for both of us. But I’m not happy that my husband is unhappy and feels that he’s lost his life again.
But I don’t believe the PD ever truly gave it back to him.
I just posted this on IHD, but thought it probably fitted quite snugly into this post as well … he rang me just as I hit the ‘publish’ button …
“I would rather die … than be sat here waiting to go back on haemoD.”
I know he didn’t mean it and only said it because he’s p!ssed off, but it’s a horrid thing to have to hear your husband say on the phone.
It took five minutes for it to hit me and then I just burst into tears.
The thing is, I’m not sure if they’re (partly) tears of relief. Today Blokey was told that the PD definitely isn’t working and he has to begin haemoD immediately, tonight. So, yeh, maybe I’m relieved (we are both so exhausted, and he has been so miserable on PD) and the tears are a part of that as well as what he said.
To put it in context, he got to the hospital after work and they thought he wasn’t supposed to restart till Monday. He was going to come home but they said that as he was there he may as well stay but it would be half an hour before a machine was ready. He’s seen three people come in and get straight on (I did point out that he wasn’t expected and they were), he has no money to buy a magazine, he can’t watch the tellybox because his headphones are here at home, and he hasn’t drained his extraneal. On top of that he is really upset that PD didn’t work for him.
This may be a rocky weekend …
(but my tears have buggered off, yay!)