If nothing else, our journey is not boring.
When to worry and what to do
Colin has had nuclear diarrhea for the last two days, and it was so bad this morning that I spent almost three quarters of an hour cleaning the floor around the bed, the bed, the under-sheet, and Colin’s legs and back, never mind really getting him into the shower. He seems fine, and is not in pain or feeling unwell, but I worry.
I worry every day, and doubly so when he is under the weather even slightly. I know that most people say it takes at least 2 years to get into a routine and to get to sort of know how things go, what what means, and when to worry. I am not sure if I see myself ever not worrying, but I want to be able to get to the point where I don’t sort of wonder if this is the thing that is going to get out of control and end up with Colin in the ICU again. I realise I am terrified that I may miss something, or get it wrong, and that Colin will end up in the hospital again; and I don’t know how to put things in place to avoid this.
Resources, education, and support structures
I am so lucky that we have resources available – the interwebs, our GP, the SCI community, family and friends; but some days you just have to go through it on your own. It is frustrating for both Colin and I that I ask him thousands of times a day how he is – I know it drives him mad, but I just want to know he is fine. I don’t really know when to back off, but am learning. I find that a large portion of my day is taken up with worry as well as the practical help Colin needs. I know this weighs heavily on him as he doesn’t want to feel like a burden. I need to find more insight into how to “work smarter” and not harder; and I know that together we will find a way to do whatever we need to; I just was never good at waiting.
Anger, fear, guilt, resentment
One of the things that is causing me some mental distress and emotional is the mixture of feelings. I feel guilt, anger, exhaustion, frustration, love, pain, despair, and hope.
I feel guilty that I can’t help Colin every moment of the day, I feel guilt that he is injured and not me – and that I can’t take it away and fix it for him; and I feel guilt that I sometimes get frustrated that I can’t just be completely selfish and do whatever I want all day long.
I feel anger at the accident, the driver, and the system that I feel put upon, and that Colin has to pay this price. I also feel angry that it affects me and my life. I feel angry that I feel guilty about these feelings, and I am angry that there seems to be no recourse again, or even knowledge on the part of the guy who crashed Colin. I wonder if he knows how his actions changed all out lives forever. I wonder if he even cares. I wonder if he sleeps soundly at night, not worrying about UITs, diarrhea, dropping Colin, putting him correctly in the chair so he is comfortable, etc. I wonder if he knows how much money we have to spend every month on the medications and complications caused by the accident, and I wonder how I will ever forgive him.
I feel exhausted a lot of the time, although I don’t burst into tears every night when putting Colin into bed, so that must be a win HA HA HA. I love Colin and just wish this had not happened to him. He sees many positives in this, and is amazing at finding wins all the time, but I know it must be beyond frustrating and difficult.
I feel pain for our loss, my loss, his loss, and for the amount of change we are going through, and I know it will change over time, but it is such a huge rock in my path, daily. It leads to despair, and I have to actively practise gratitude, and count my blessings every day.
But then there is hope. I know that Colin and I make a fantastic team, and I know that we can overcome almost anything. I would not be able to get through this without him.
I am reminded of a quote from Shawshank Redemption: “Hope is a good thing. Maybe the best of things. And good things never die.”