So, this week I thought I would share a post about my recovery and in particular where I am at today with spasms caused by my SCI (Spinal Cord Injury).
Firstly, I am very fortunate to have made such an amazing recovery and am grateful every day, since I know many others who sadly haven’t and remain in wheelchairs. All SCI patients are told they will never make a 100% recovery and the best I have ever heard of is a 95% recovery. I’m not quite sure how this is measured but compared to how I was before my accident I would guess that I am somewhere in the late 80s and am still working at it. I will give more of an update on this in another post if anyone is interested? 🙄
We ‘SCI’ survivors are a bit like snowflakes; there are never two the same. I search and search to find people with a similar recovery level to me and even when I find one that seems to mirror my level of walking, they have very different symptoms. I’m naturally a bit nosy perhaps, but I love reading about everyone else’s recovery and how they reach their ‘new normal’. For someone who wanted to bury their head in the sand initially, I really can’t get enough of it now; I am in an SCI wheelchair group, SCI ‘walkers’ group and an SCI ‘powder room’ site (spasms of a whole different type in here 😜). One thing I am so grateful for (and believe me there are many) is the fact that I don’t seem to suffer pain. Most do and my heart goes out to them. Even the walkers like myself seem to be on high levels of meds or CBD oil to cope with their neural pain. I’m touching wood as I type this, being I’m only 18 months into my recovery and don’t want to jinx this. I certainly hope it isn’t something I have yet to come.
So, Spasms, that’s what we’re here for… and in particular my spasms, which seem to be anything other than ‘textbook’. Spasms are caused by the signals being interrupted at the point of injury (to the spinal cord) and not allowing the messages to reach the reflex centre in the brain causing a loop in the spinal cord. Think of it as an electrical circuit breaker that is broken causing an ‘arc’ of sorts. I shared a little video of my leg spasms not long after I came out of hospitaln (see below). Nothing has changed since then; one year on and I still have this quirky trait. However, (and this bit is rather unique), I can start and stop them at will. If I move my foot or raise onto my toes in a certain position it will trigger the spasm, but I can also stop it by moving my leg out of the position or pressing down with my hand. How cool is that? This type of spasm has the bona fide name of ‘Clonus’ and I’ve yet to discover anyone who can start and stop them in the way I can.
So, my mate Clonus, who is quite the ‘entertainer’, is here to stay it would seem. He’s still going as strong as he ever was…
A new symptom I have these days, which is not half as much fun as Clonus…are cramps! Particularly problematic in my calves and hamstrings. My calf suddenly goes into a cramp which painfully contorts my leg or foot into a twisted position making me huff and puff like I’m having a baby until it passes. Sometimes in the middle of the night, my hamstring goes into an excruciating cramp, causing a near panic attack before it passes. It breaks me out in a sweat (or maybe that’s just my age). I mention cramps in this blog because I am not entirely sure if they are indeed cramps or spasms as surprisingly I haven’t googled the difference, but whatever they are; they are new to me. I used to get the odd cramp-like most people, but nothing on this level. It’s a small price to pay for how well I have recovered.
Now the best of all; are my night spasms in my back. These happen when I’m right on the brink of dropping off to sleep and are a bit like those times when you feel like you’re falling off a cliff and are jerked awake just before you hit the ground. (I’m presuming you have all experienced this?) Well instead of a sensation of falling shocking me back to reality, I get a short sharp spasm in my back that makes me squawk like a parakeet. I have recordings of this if anyone is interested. 🤣
You can guarantee that every night without fail, I have one of these. Let me share with you how it feels. It takes place around the site of my injury (T12, which is about an inch under the bra strap line). Sometimes it feels like a short sharp bee sting which barely takes my breath away, but most times it feels like a ‘full-on’ electric shock zapping me in the centre of my back and causing me to jerk in shock. I always scream or squawk when this happens, but it is momentary; almost always followed by a fit of the giggles because I know Martin has heard me, either lying next to me or downstairs in the armchair. Honestly, it doesn’t take much to set us two off laughing!
So, as you can imagine, these spasms can be quite annoying, since they inhibit me from being able to fall asleep; either because I’ve woken myself up laughing or for fear another one may happen. You see, in the main, it only happens once but there have been odd occasions where it happens twice, rendering me very twitchy waiting to see if it happens again. Have you ever had a glaucoma test in the opticians where they puff that little jet of air into your eyeball? It’s a bit like that, and if your anything like me, I just can’t stop myself jumping 3ft off the chair when they do it!
So, the fact the little bugger happens only once (twice at the most); really does not justify the use of spasm meds in my opinion. It’s something that I just accept as ‘my new normal’ as does Martin, our dogs, and possibly even the neighbours… 🙀