Rescue From The Pit Of Despair

I am in this deep pit of despair these last few days, coupled with an exhaustion which does nothing but make me want to sleep. Sleep helps me avoid the terrible thoughts of the deep depression, so I guess it's a good thing. Today, I am trying to climb out, trying to wake up. Today, notwithstanding the tremendous difficulty, I am going to get out of my building, even if only to go buy milk and sandwich meat.

Yesterday my afternoon HCA, or some other evil spirit, left the spout open on my catheter bag. I called the agency, asking for her to return and wipe up the mess. She returned all right, angrier than a slapped bumblebee, indignantly telling me she didn't do it, that I shsould not have called the office saying she did it.

My resposne was simple. Someone did it, so  please clean up the floor. "If I do this, I will be late for other clients, and this is not another visit? Should I put you to bed now?" It was not even 7:30 PM, so of course I said no. I also said "We're not doing this. Get the mop and clean up this mess." She complied, grumpily and offended that she had to do this. In spite, she cleaned the dining area, but not the hallway nor my bedroom where my tires had laid down tracks of urine. No, she did the least possible, then got out of my apartment.

Then I tried to get dinner going. I wanted to get some pork chops out of the fridge. I opened the fridge door to discover my angle to the fridge shelves was such that I needed to turn 180 degrees to get a better angle for grabbing. Unforunately that turn somehow engaged the headrest of my wheelchair with the door of my freezer on the fridge, bending the headrest and ultimately pulling off the lower shelf of the freezer door, spilling the contents asunder.

The really sad part of all of this is that, even with good positioing, I waw still unable to pull the pork chops out of the fridge. Not enough strength. I sat there for a minute, contemplating where I was, how far I had come; wondering if I should  finally surrender to the inevitable.

I gave up. I called my friend Tonny. He came over and sized up the mess. He had it fixed in a matter of minutes, then asked me what I was doing. I said I want to cook those pork chops. So he did that too, making enough so that I could today as well.

Tony says I need to invite someone over every couple of days. Then they can help me cook dinners with enough leftovers for the next few days. The honest truth is I already have a few days of leftovers in that damned fridge. His idea is the right idea. I'm going to try it. So far I have a meal for today, Wednesday, Thursday, and Friday, except I will need help getting the pasta down for Thursday. I will ask Dion to take i down when he is here on Wednesday. Brian and Tanya are here on Saturday, so all is good for the rest of the week.

The first two events of my day could have driven me deeper into my wallow. Actually they did, especially the angry HCA. I don't need that shit. Then came Tonny, both with the fridge rescue and with cooking my pork chops. That deliverance from disaster made an amazing difference to me, affirming that I have friends who care, taking control of a situation where I had lost control. 

So today, things are looking up. I'm going to Safeway, maybe even Coop!

Done

It's too hard to type today. My arms won't reach. My fingers are tired. I'm done.

Should I Stay Or Should I Go Now

It's days like today that get to me. I have nothing on my agenda until my daughter Kate gets here with her two youngest boys. They are coming for dinner. I suggested I make pork chops but Kate insists on getting Chinese take-out. Yet here I am, wondering about what I will do for the next five hours, wondering about other days where I sit, doing nothing for long periods of time. The combination of boredom with a real sense of valuelessness in my life leads to dangerous thinking.

I do wonder why I continue to exist, why I fight to stay alive. It's not really much of a life. I am unable to do much, and even if I could I have no budget for it. If I was well, I would be working. That would take care of so much in my life. My work gave me purpose, and paid for all of my adventures. These days I need help paying for groceries.

I know I should be grateful for what I have. I am. There is not a moment when I am not reminded of how kind and helpful those around me are to me. I merely have to ask and there is someone to take me shopping, take me out for a drive, take me to the movies. Many times I don't even have to ask; it just happens, as if my magic.

Yet here I am, wondering if I should bother to keep going, wondering if perhaps I might have pushed this whole thing a bit to far. I can no longer open a door. I can no longer pull up, then put on, my seatbelt on my wheelchair. I can still cook a bit, but not much, not a great many things. My diet is becoming limited by my abilities. I want to make a Greek Salad, something I really like, something I make, or used to make, a lot of. Yet the mere thought of the exertion is too much for me. I close my eyes to rest even when I think about it.

Road trips are a distraction. Travel is a distraction. Shopping is a distraction. The problem is that when I have no distractions, when I am alone with nothing to do, I start to go dark, wondering if I really have any good reason for being here. So far it's a toss up; there might be reasons to stay, but there are lots of reasons to leave.

Trapped Indoors

My arm and shoulder strength has fallen to the point where getting out of the doors on my building has become problematic. I have to lean forward, something that is hard to do when I am set back in my wheelchair. Then I have to move my hand forward to the door handle, another non-trivial task. Finally I have to push or pull as needed.

Pushing is not a real problem. I approach the door closely, putting pressure on it with my toes. This pressure, when applied properly, causes the door to pop open a bit once I get the lever handle down. I have to be careful, though. If I apply too much pressure with my toes, I am unable to move the lever. If I apply too little pressure, nothing happens, leaving me to start the whole process again with a bit more pressure on the door.

It's the pulling part that is most difficult. If I can position myself just slightly to the side of the door, usually I can open it enough to tuck my wheelchair foot pads inside the open door, then use my wheelchair to push the door open completely. However if I don't get that tuck quite far enough, the first movement of my wheelchair will lose the edge of the door, allowing it to close. I have to start again.

What's worse is when I am in an enclosed hallway where the door swings inward. I have to move as far as I can towards the wall where the door opens. Then I lean forward, doing my best to grab the lever or knob so I can pull it slightly towards me, until it hits the chair. After first contact, I back up while holding the lever, opening the door as I go, trying to make a turn such that I can move myself forward into the gap, finishing the job of opening the door. This, of course, assumes I don't lose my grip on the door knob while attempting this ballet of chair and door.

I've asked the condo board if they might consider putting handicapped buttons on the three doors I must use to exit the building. Their response, rightly so, is that it's not just three doors. If they do these three for me, they have to do all the exit/entry doors in the three buildings in our complex. That's about 10 - 15 doors. This doesn't include the inside fire doors which would also make the list at some point. So things are not likely to change here.

It's another reason to have a live-in, so I can have some help with the doors when I want to go out. For now, though arduous, it is a task I can complete most times, albeit with multiple attempts. I've already begun avoiding going out because of this. Soon, though, I will be unable to do doors, even my apartment door. Then I will be truly trapped without help.

Exhaustion Day

My exhaution level today is full-on, so much so that I just cancelled dinner with a friend. I am almost non-functional. I've been resting all day, hoping for my energy levels to rise to the point where writing this post would not wear me out. That has not happened, so this will be a short post.

I think the massive state of exhaustion is the result of all the stuff happening in the last few days. Shelby left. David and I are searching once again for a live-in. CBI is back, screw ups and all. I had a brand new HCA today who, along with her supervisor, had never handled a condom catheter. They went through three of them. The one they finally got attached has just come off at first use. We never did get to ROM exercises.

Sleep, or napping, or resting, whatever you want to call it, has been my sole activity up until now. In a few moments, it will once again be what I am doing.

Shelby Quit

Shelby quit. Actually she's already left, headed back to PEI. It's a shame really; she was very good at her role as an HCA. Unfortunately she started to express some serious homesickness about a week after she was here, then spent that week struggling with the decision to stay here or to go home. By the end of the week, she had decided. She wanted to go, as soon as she could. Ulitmately she left before completing her two weeks notice period, she was so anxious to get back to PEI.

When she told me she wanted to leave, I said I wouldn't say anything publicly about her decision until after we came back from our visit to Vancouver. I also said I would not put anything in my blog until after she left. Hence what may seem a surprise to others is no real surprise to me. To her credit, while she was here she continued to do an excellent job of caring for me.

I feel like I have been left in the lurch. All of this has left me both emotionally and physically exhausted. The work in finding a live-in caregiver is extensive. David is once again taking the lead in all of this yet I still carry my own portion of interviews, decision making, online postings and such. Even the process of switching back to CBI and regular home care can be tiring. I was reminded at 9:00 AM this morning that they have their schedule; it will not bend to mine.

On the positive side, David and I have learned a great deal about this process, about the kind of person we are looking for. We have learned what we need to emphasize in the interview process, important questions we need to ask, information we need to provide before taking on a new caregiver. I am hopeful this interval will be short while at the same time one of the things I have learned most of all is to not rush things, to give everyone a chance to sleep on it.

I Don't Want To Eat

I hate feeling nauseous. It happens sometimes, for no apparent reason, that my stomach goes off. It's been happening now for a few days, inconsistently, along with a general feeling of unease in my lower bowel. Neither end is going crazy; both of them are making threatening gestures. I just feel really uncomfortable.

A part of this has to be the amount of time I spend sitting, or laying, idly, not moving any part of my body except my arms, hands, and head. Even though I still have some muscle strength in my back muscles, I can't really move much of anything below my shoulders. When my body doesn't move, other parts of me don't move so much either. It's so important to realize how much your core muscles contribute to your digestion and bowels.

The other really annoying thing about this feeling is what it does to my appetite in general. Last night I was talking about having Grilled Cheese Sandwiches along with French Onion Soup as a brunch today. This morning, when I got up, I realized that was definitely not going to happen. So, as she was dressing me, I suggested to Shelby that I might want something really simple, perhaps even breakfast cereal. Then, as she got out my breakfast cereal bowl, my stomach lept into my throat, demanding that all thoughts of food cease. I complied.

So here I sit, perhaps humgry, perhaps not. I'm certainly not up to eating. Water might be okay, perhaps a latte or coffee. Anything else is a mugs game. Even thinking about eating makes it worse.