Death, Beacon, some anime Yaoi, boy and girl pics and me on the BBC

I had some great insight earlier today which was about 8 pain filled hours ago. Amazing how pain can scrub out the old noggin, something about how Death is something I have to face a few times a day, preparing for it, acknowledging it, not some far off place.

Oh yes, the Word of Mouth program on the BBC 4 is playing on Tuesday (today) and then again next Monday. The website for it and the live feed is here.

I shudder at people who know me hearing my voice or what I might have actually said (or been edited to say!). Thankfully, that is past my five days so I can’t really remember. And however bad it is, and my reaction I guess the same is true (I won't remember in a week!).

Tonight Linda went to a support group for people in similar situations (dying spouses or parents); she was the youngest there but it was sobering to hear how many people are slipping through the cracks, and how many doctors are simply avoiding responsibility if at all possible.

But like I said, I nap while Linda goes to a group about my death. There were a few more, “Yeah, you are dying” things today – Beacon did another incident: management who lie to me or lie about me or try to say I said X, because the relatives are ‘used’ to those in care being ‘confused’ make me very angry. These people are the lowest of the low. They tried to call us at 11:00 and then sent over a person at 11:30 and claimed they had “tried to reach us all morning.” This was because my “angel of mercy” who overdosed me on opiates LAST overnight care, is not investigated, just sent on to another person (good luck!) and they needed to put another person in for tonight; but this person wasn’t trained. So they and my caregiver (who they said was to train them on oxygen) argued while I got no care. Then I was informed because of MY not allowing the training (which has to be done by an oxygen technician) I would not have an overnight care tonight. Anyway, lets just move on and try to figure out why my apartment manager needs to give 24 hours notice to come into my apartment but Beacon thinks they only need 30 minutes.

One of the great problems with Beacon and VIHA and other care giving agencies is that they don’t like that Linda is my medical point of contact and try to endlessly call me instead. This is because Linda, like them, is busy and at meeting and they have to leave messages. That irritates them. So while I may have spent Thursday and Friday trying to get ahold of my VIHA case manager; she called me today because she didn’t want to leave a message on Linda’s voicemail. Well, I guess this means they need to plan ahead. The whole problem is that everyone who makes decisions leaves on Friday, and returns Monday. So while I had no one scheduled to take care of me tonight since Friday mid-day, nothing was done until the manager looked at it on Monday (today, when I needed the person) and tried to jam in, lie around and force a solution. Disabilities however do NOT take weekends off and it vexes me that a Care giving agency doesn’t ‘get that’ – that part of seniority is that all the decision makers get the weekend off.

Well, at what year of having a disability do we get our ‘weekend temp’ to come, as WE transfer all of our disabilities on to them, saying, “see ya Monday!” cheerfully while they start screaming from the pain?

Because that is what I want: I want to wheel down on Friday, grab the head of the RN manager and somehow with flashes of lightning, transfer all my pain and conditions on to her. Then as she goes into a Grand Mal, I stand up, step out of the chair and say, “See you on Monday, please don’t call, it’s my time off!” Because that is how she treats me and so many others under her care. So it might be illuminating if she finally “got” that there is no ‘time off” in home care. And that is an ablist and an “us” versus “them” attitude.

Beyond that, I did a bit of postcards this weekend, so to finish, instead of fantasizing about inflicting more pain on those in Beacon – or taking up my managers ethics and calling up her children and trying to trick them into agreements (like when they weekly/daily ignore the person with medical power of attorney and talk and lie to the person who is just back from hospital), I will show a few pics. How about some nice anime girl pics, I tend to LIKE those a lot!
And here for equal opportunity, are some of the boy pics, admittedly, some of them are boy/boy pictures - no, look closer, that is a guy hoisted in the air (oops and one girl/girl pic). I worked too hard this weekend. Or rather, doing postcards as I have been doing them is no longer possible for me, so I will have to change. I am simply no longer able to take two or three days of long stretches of work and get 30 postcards done. Not without hours of seizures or hospitalization situations.

I did do 25 postcards this week and another 6 today but this is the last weekend, after this, the total weekly number will drop a bit as I try out new ways to get postcards created and sent out.

But I’m not out for the count yet, it is just, even at my best, I am getting noticeably slower and weaker. And postcards is a sort of fixed activity which demonstrates that best. It is not what we wish would happen, but it is what we expected to happen. Like I said, Death isn’t really romantic anymore, is it just part of what I face, what hinders and limits me.