What is true love? True love is when your partner returns on a harbour plane from a secret government meeting yet still had time to find you jangly and complete skeleton earrings as a present! Ha, now I don't need to keep trying to find the Book and Bone Faire in this city. Here is what love looks like in our family.
Today was my, “I am in control and going to be a good person day!” The basis of that was that I like many of my friends was/am BURNED OUT. Why, becuase I keep pushing the envelope every day (push! push! push!) and not only does this result maybe in TIA’s (HIGHLY LIKELY) but also I can’t seem to wake up from my EARLY afternoon nap until 8:00 pm (or later). Now, when your partner starts to go to bed at 10:00 pm, that really sucks. See the original PLAN was to sleep 3:30-4:00. But there is always another phone call or thing to do, or just one more postcard, until it is 5:30 or 6:00. But today, today was DIFFERENT. For example, I went to bed only 30 minutes later than I planned on going to bed, the SECOND plan which said 4:30 (see there IS a PLAN, which says that if I sleep the same time every night and every afternoon I won’t need sleep aids or valium because I will grow naturally sleepy. If I ever kept to those times, I am sure the PLAN would work great).
I just woke up, 20 minutes ago with the right of my body frozen/paralyzed which means I had some sort of seizure while I was asleep and a tiny problem with my voice (slurry with a bit of Charlie Brown "Wa wawa wa WA WA!"). But you know, even though I had four DIFFERENT emergencies I did still go to bed a little after 5:00 today and woke up…..at ten minutes to eight. ARG!!!!
So just for the MANY poeople in high school who are contemplating putting “disabled” or “cripple” for their aspiration as a second choice after "beauty nail consultant" or "televangelist" on those “What do you want to do with your life?” high school guidance counselor forms (at our cult religious school they filled them in for you and THEN gave them to you), I just want to point out there ARE down sides. The major down side is Control.
You do not control the vertical or the horizontal and I’m not talking about the TV. Having a complex not-always-stable disability like me for instance which includes hyper-somnia, can mean while you go to bed, one day, because they shot a lot of electricity through you, and even if you are DEAD TIRED you can only sleep maybe 80 minutes, and that is with sedatives. While another day, unknown to yourself, because you are in extreme pain from doing your 30 minutes of boxing from yesterday, your body has created its OWN PLAN, which involves putting me in a near coma state to recover from…well, I guess ripping all those muscles. And maybe while sleeping I got hot and my neurons don’t fire or fire too much and so I sleep and sleep and then wake up paralyzed and MY plan of doing 4 postcards, and then some packing as well as blogging is in need of adjustment. See, my body doesn’t have email, or even post-it notes. I WISH it would leave a note on the bathroom mirror saying, “Hey Beth, you might feel a little punky now but tomorrow I thought I would take a 'fatigue day’ so don’t expect to like, MOVE tomorrow, and wait for your homecare to put you in The Chair”. Or another note saying, “Yeah, those endorphins feel good but I’m bored so I might decide to just crank the nerve ending stereo tonight because I’m having a party; hope the mind blowing pain for the next 18 hours doesn’t bother you too much!”
There are up sides. You get to meet cool people. And the computer becomes your friend, your VERY GOOD friend, well except today which was a ‘Bad Day’ due to small stoke earlier this week and I could not remember how to do certain things and kept thinking the ‘print’ button was the ‘save file’ button. Actually it might be a really bad day because after doing that twice I still DID’T get it. Just repeated incidents of hearing the printer warm up and suck in the paper and me going, “Fuck, NO! Fuck! Why do you keep doing this!?! Oh how do I stop you?”
Also I was unable to answer the question, “What would you like with your sandwich?” because it was ABSTRACT and there was no list, so I had to imagine what there would be (which is something post stroke that I can't do, not on BAD days), and I sat there for two minutes going, “Ah…..Ah……Ah……” while the Care worker is going, “That’s okay honey, having a hard day speaking are we.” When what I needed was her to bring things from the fridge until I could point at them because my brain would say, “We recognize this!” That’s really irritating too, when your care worker assumes you have one completely fucked up problem (like not being able to SPEAK), while you really have another completely fucked up problem, (like not being able to imagine abstract things, like what might be in a fridge, and what in this imaginary fridge would go well with a sandwich). Only since the response for both is to stare out and keep TRYING and going “Ahhh……AAAAAHHH…….ah………AAAHHH!” On a positive note I think of it as sort of disability minimalist theatre or my OWN version of Waiting for Godot, where I have reduced the dialogue even further!
Of course part of being late was a phone call from Beacon, my care giving staff, and this was an RN calling who is also the team administrator. Beacon has decided instead of using RN’s to assess the level of knowledge of the staff or to answer questions or do medical training, to use them as administrative managers instead. Anyway, she was getting back to me about a woman I sent home it seems on the 9th of June, which I told the scheduler I did on the 10th, and she reported that I had flagged this woman as a “do not send” (as in do not send back!), which was created on the 11th, so this RN wanted to know, what did I find that wasn’t satisfactory in the care of the person from the 11th? Now, the problem is that I cannot count sequentially or do time, like in the past. The day to me are like those bags you have for scrabble and you just put your hand in and pick out something. So most of today I thought was Wed. (which it turns out it isn’t). And people, like care givers say, “See you next week!” which to me sounds like, “Gorp do gobble de gorp, I AM GOING TO EAT YOUR CHILDREN, gorp de gobble gobble!” Okay I know they aren’t going to eat my children but they are going to get really peeved when I don’t expect them again or I go, “You’re here, already?”
So I am supposed to know about the 11th, or the 10th or 9th, except I don’t have any idea what day it is NOW. And I ask the RN what day it is and she assumes I am being cheeky and says, “This IS Elizabeth McClung isn’t it.” And I say, “I believe so.” And she wants to know what the DNS was (DNS turns out to be a “do not send” designation). So I still have no idea what day it is now, but I explain that they keep sending people over for overnighters who, while my file is very clear about the complexity of my condition, seem unable to understand that I have such a range of possible conditions and what they might do. So I repeated a whole conversation where the woman’s solution to my NOT BREATHING was to give me oxygen and when I made it clear that I was PASSED OUT and thus, not breathing at all, she asked “Give more oxygen?” like this was a game 20 questions: the home medical version. I told this RN, that I have an hour to assess if the person can read (twice they could not) since I have many powerful pills and if they can’t read, and I can’t speak…. (I was assured with the NEW training they were giving on ‘medication’ that they should soon identify their workers who can’t read). Or to give them my different conditions and some reactions and see if they have an idea of what to do. By the way, the answer to NOT BREATHING is “Call for assistance” or “Call 911” And I said I cannot GO to sleep if I do not get a clear rapport with the worker that they will be able to respond to my issues because when I signal for them it will be because a) I am in incredible pain, b) Some or part of my body is paralyzed, c) I am having a TIA, stoke, cannot breathe and/or need the bed raised or d) having something that I feel needs immediate transport to the hospital. So I asked if she could please, as TEAM LEAD, and the person following up the DNS, try to find people who would fit this criteria at which she immediately barked in a “Don’t make me discipline YOU!” voice that such was only taken care of by Scheduling. Well that is SUPER, because Scheduling don’t KNOW these people except to say, “They haven’t been fired or under police report for at least a year.” Which is why so many end up as DNS.
Maybe I am optimistic but I really hope they are not, for example sending someone who is doing overnighters for a senior with a touch of dementia and then after they do that a couple months the send them to care for someone with AIDS in their final stages. I HOPE they don’t do that, because you can see, one involves cocoa and saying “This way dear” and the other involves lots of meds and a host of other issues which may include respiration. But from the people who show up and say I am the youngest 'client' they have by 40 years, that it seems likely.
Anyway, that was one of the reasons I was late to bed today. And tomorrow, which from how Linda talks seems soon, we are going to AMERICA, the land of indefinite internment, monitoring by the government and interviews by many, many security forces before entering (and after entering)….Whoops, I meant to say the land of FREEDOM! So I will post a few postcards from the US tomorrow.
I just realized there is an added benefit of disability, for your guidance counselor: while everyone it is “say No to drugs!” and “War on Drugs!” Disability land is “Say YES to drugs!” True they don’t always get you high (unless you live in Canada), and cause all sorts of side effects, but yeah, big old YES to drugs. Which is why when you have a drug by your bed where you are taking a couple hundred milligrams of straight tramadol (synthetic opiate) having a caregiver who can READ and tell the difference between your muscle relaxant and an opiate overdose is a good thing.
Before I leave for tonight I wanted to say a) The going to the USA is part of a very crazy plan which may involve coming back on a stretcher and being met by an ambulance since I will be leaving ere morn and returning AFTER 11 pm. So, likely no blog tomorrow and likely, I will be in the land of “ALL FUCKED UP” on Sunday. But I will have an adventure to tell everyone about so it will be worth it!
And b) Linda has gotten me some gifts, because my earrings keep dying on me so here I have the three gifts of Linda (she gives a gift a day, while at the same time cutting off my manga and postcard money - hint! hint!). So there is first the Starbucks gift of summer. Which I guess means I can either go out alone or use it to treat people who come to visit me (hint! Hint!)
After that she got me the cool skeleton earring you saw up top, part medical school and part New Orleans (Two of my favorite places! Both encourage drinking!).
And finally the Gothic bat earrings. So I am all gothed up earring wise and ready to go....to Starbucks? Well at least they are accesssible and you can use their cards world wide. Which is sort of creepy when I used the same $20 card to get a drink in Canada, then in Seattle, then Japan, then finish the total back in Port Townsend or Port Angeles. It really is the Bank of Starbucks!
Have a good weekend all – as for me, I plan to play so I will have to pay. Now I am finishing this off, packing and I hope doing a couple post cards!
Remember this weekend, “Do what Beth would do….only with less power tools!”
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