Invisible Disability

Spinal Update

So, this week’s topic is a little about spinal cord injury again, since I experienced a recent breakthrough, which I am still celebrating!  For those who may not know, I suffered a fracture to my T12 vertebra in 2019, along with ‘incomplete’ spinal cord damage.

Now, you may have noticed, that my blogs swing from mental health topics, memories of children, mindset, and funny predicaments to spinal cord updates, but hey… variety is the spice of life, so they say!

Friends may know if they follow me on FB, that last weekend I managed a dog walk without using my walking poles. This was a huge breakthrough, and, I believe, a consequence of my recent cycling.

New Exercise

We invested in a rather flashy, top-end exercise bike a few months back. No, not the infamous Pelaton – since I did a spin class ONCE and that was quite enough for one lifetime – but rather a fancy gym-style bike which has a substantial sized flywheel and Bluetooth which talks to my mobile.

Kinomap is the app that I chose, and it supplies me with an array of cycle routes all around the world. I can compete with others, but find this is somewhat futile since no-one else has a spinal cord injury, so I mostly compete with myself.  I can cycle on a beach in Italy, or a mountainous route in the alps, whilst listening to the sound of rock music pumping out of my headphones, or an audible book (is that a bit geeky?).

I managed a sweaty 50K during the month of October, and I’m pretty sure this is why I have seen a change in my condition; the balance on my weaker side has notably improved and the neural discomfort in my foot has lessened. This has improved my overall ‘gait’.  Fingers crossed my weight breakthrough will follow soon!

Will You Always Need a Stick?

Now, people often ask me – “when you’re fully better Nikki, will you not need the walking stick anymore?” So, let me emphasise for those that don’t know… it is IMPOSSIBLE to make a 100% recovery from a spinal cord injury; it has never been done! That’s not to say that I won’t be able to discard the stick for good one day, I’ve seen others who use no walking aids.

SCI Injury Walkers

For some ‘walkers’ who don’t make as good a recovery as I have, they may be half wheelchair users, half walkers. They are constantly hounded with people’s assumptions that because they are in a wheelchair, they shouldn’t be able to walk as well! Or vice versa… why use a wheelchair when they can walk?

Then at the other end of the spectrum, there are those that can jog, walk, or run again because they gain full use of their legs. However, they may encounter problems doing up buttons on their shirt if their hands are affected by neural damage; some may have chronic neural pain, others may have to self-catheterise.

Every Disability is Unique

So, you see, there are many invisible parts to a spinal cord injury that can’t be seen. It is an exceedingly complex disability, and, no doubt, despite being the Google Queen, there are many elements of it I will never get to grips with. Every single injury is different, a bit like snowflakes. But one thing I know for sure, is that I am one of the lucky ones! All that matters is to keep pushing at a personal level; to maximise the best recovery possible.

I was told by spinal specialists that there would be no further recovery possible after two years; that all the nerves would have re-routed, and I would have reached my full potential. Well, I’m not one to follow the rules! My two-year mark was in July this year, so I’m chuffed to pieces that I have noticed further improvement over the last few weeks.

But, and it a big BUT: that’s not to say that I won’t still be using my walking stick sometimes, or that I won’t still have my ‘bad’ days. Like many invisible disabilities, mine is affected by the amount that I do, the weather and other variables.

In addition to the cord damage, I also have metal fusion which means I am unable to lift heavy things or do certain moves such as sit-ups. On cold, damp days, I most definitely feel things stiffen in my back, and experience some discomfort.

The cramps and the spasms have reduced but are very much still there. The back spasm I get at night still causes me to yell. It is a strong electric jolt, but over in an instant. Invariably I have a fit of giggles afterwards, so it really isn’t that bad (Martin may say differently). It only happens once or twice, and some nights, not at all.

Invisible Disabilities

I know a few people that struggle with ‘invisible’ physical disabilities such as fibromyalgia, rheumatoid arthritis, and M.E. (There are many others too).  I consider myself so very lucky, because I don’t suffer with chronic pain in the way they do. In fact, whilst I can feel my back is different, and at times it may ache, I don’t really suffer ‘pain’ at all. My migraines are more painful than my injury!

So, to finish… an invisible disability can be a physical, mental, or neurological condition that is not visible from the outside. It can limit or challenge a person’s movements, senses, or activities. Like with many things that I talk about, this is another area that can be subject to ‘stigma’ – people’s false perceptions and judgements. I’m passionate to talk about these things, as it’s the only way people can shake these misunderstandings.

Thank you for taking the time to read.