The Cost of Leaving the House #1

We need to wind back to Friday for this story to be complete. I got dragged out of the house whilst my wife was doing the weekly shopping. It was the first time I got out of the house for something not medical in weeks.

Now you have to understand how this works: she will put me in “shopping care.” It’s like day care, but for disabled husbands that need to see the outside world. This involves me being dropped at a coffee shop or restaurant for the duration of her shopping.

Now you might ask why I do not accompany her. It’s simple: even if I look like I could do the walk, I might not. My back or my leg will start to pain seriously enough for me to have to stop walking, or standing for that matter. Ever seen a grown man cry in utter pain? Well, it happens to me more than I’d like to admit. Then there is the recuperation time from an event like that—1 hour to 2 weeks. We no longer take the chance.

I got home on Friday and things were tense but bearable. Then came the night. I fell asleep at about 11:00 after turning and tossing to find a comfortable spot; nothing unusual there, it’s a daily routine.

At 0:30 my calf goes into a spasm. No, my musculature attempts to crush my bones and dislocate my foot from its socket, all the while trying to twist out of my knee socket. I dreamt the pain before I woke up in agonizing pain. I knew I had no other choice than riding it out. My wife sprang into action: “What can I do?” I knew there was little that could be done, so I did what every chronic pain sufferer hates but knows will help. I reached for my opioids, took one, and waited.

Now you have to understand, these medications are generally fast-acting and in my case last about 8 hours, even though the box says 12. It reduced the pain considerably, enough that I fell asleep again.

10:00 Saturday. I wake up to the smell of black tea. I don’t generally like coffee when I wake up; I’d rather enjoy it at lunch like some may enjoy a good wine. I like my cappuccino brewed from beans too—call me a coffee snob if you will, but I enjoy so little nowadays I go for maximum enjoyment where I can.

The plan for the day is to do shopping for gifts for my brother-in-law who is in South Africa for a couple of weeks. This time, no “shopping care”—I have to be involved. Problem: my little incident of the night is still lingering and my right hand, the original source of all this pain, is acting up. So, another opioid is in order. We wait until 12:00 for me to take it, and we left.

Arriving at the shopping center, my pain was bearable and my hand was shaking, sometimes violently, but I could use it. What we immediately found is that I could not walk.

A Note on CRPS: I need to pause here. I suffer from CRPS, one of the most painful conditions known to man, but I’d like to add, one of the most unpredictable ones known to man too. I can be at my baseline now and not be able to lift anything with my right hand, walk, or even easily communicate an hour later. It’s the nature of the beast. Most people do not understand that this is my constant truth and there is no cure. You can achieve remission, but it could hit you back at any time.

Back to Saturday. We are lucky in South Africa that most major shopping centers have wheelchairs on hand. This by no means means they are friendly to disabilities. I could not access 2 of the restaurants of the shopping centre because I was in a wheelchair. The shopping centre in question is not wheelchair or disability friendly by far.

My wife wheeled me around and left me to my devices where I found it hard to navigate. The shops are not laid out in a way for wheelchair users to move freely. Then there is the people factor: they just do not look where they are going or are plainly rude. Though not my first rodeo in a wheelchair, this was my worst experience by far.

We came back home and I was finished, completely drained. I wondered why. In retrospect, I think being in hypervigilance all the time must have been it.

I slept reasonably that night, no meds needed, but my leg still ached and was hypersensitive to touch. Both my wife and my Malinois watched over me that night. My Malinois are not allowed on the bed unless invited. Apollo was invited; I find his presence soothing when I am like that.

Then came Sunday. I was drained but felt better. The incident with my leg lingered but it was a minor inconvenience by then. The day was reasonable by all accounts—not quite baseline, but bearable.

Then Danu, my female Malinois, forced herself past me into the study. Now understand, I was not stable yet, and by forcing herself I was forced to stabilize myself. I used my right hand and caught my thumb’s nail in the switch panel, resulting in overextending my thumb relative to my hand and damaging my nail.

Now for most people, this would be a major discomfort for a short time. For people like me, this is a dramatic event. It takes us far longer—as in days or weeks—for the pain to subside, and it’s not necessarily exactly where the incident initially affected the most. For me, it’s my ring and little finger as well as my entire forearm and elbow that eventually took the brunt of the shock, even though these fingers were not initially involved in my opinion.

I write this on the Tuesday following this story and I am still suffering in my hand, and had to take painkillers to—if nothing else—lower the pain enough to function sufficiently to write this post.

Before you judge me for taking opioids, painkillers, or using a wheelchair, wait for more of these posts where I will explain why.

I do not do this out of choice but rather out of need, so I can live some kind of a life where I can find satisfaction.