Day 191

What lies beneath

I am fortunate enough to now be in a position to start giving back to some of the charities that have helped me since my accident. Currently this is only in the form of speaking at dinners and functions as I’m not exactly in marathon running form yet, but I’ve enjoyed it nevertheless. I’m not sure why, but I find that I can speak openly and honestly about my experiences without any trepidation or tension. It may be as a result of writing about it from the beginning, or just that I’ve completely accepted what’s happened, whatever it is, I’m ok with it.

Attending these functions is great, however there is a lot of unseen logistics that still have to go on to make it possible, in fact, to make it possible to go out anywhere at all. On the surface it now looks like I’m almost recovered. Yes I have walking poles and walk awkwardly, but on the whole I look like I’m getting around just fine. That’s great, and I’m so grateful to be at this stage already, but a lot of it is smoke and mirrors. The truth is that If my FES stops working when I am out of the house I am pretty much rendered immobile, so there is the stress of relying on electronics. This calls for spare pads, units, batteries to be with me all of the time. Then there’s the issue of spasms, they can catch you off guard and normally choose awkward moments to rear their heads. I managed to rescue it luckily, but only last week at the premiership hall of fame dinner, table 1 nearly had an uninvited crowd surfer when my left leg tried to throw me off the stage in front of 400 people…😬🏄🏻

These things are frustrating, however far and away the most troublesome issue when out and about is still the bladder. The average bladder holds between 400-600 ml, I currently have an overactive bladder which likes to spasm at about 200ml. This means that I need the toilet regularly, and the urge will come on suddenly and strongly. Because of the relative weakness of my pelvic floor, I usually have about 2 minutes to make the porcelain before the dam breaks, which can sometimes be a close call given the speed at which I’m operating at the moment.

Because of this I have to manage myself carefully depending on what I am doing. At home it’s fine as I’m never far away from a toilet, however when I go out I have to take certain precautions..

First of all I will limit my fluids, this is counterintuitive for me as I have always been aware of the importance of staying hydrated, however trust me, a bit of dry mouth is preferable to wetting yourself in the middle of Tesco’s. The second line of defence is incontinence pads or pants. These rarely get called into action anymore, but wearing them just gives me the reassurance that if something does go wrong we’re talking puddles rather than floods. The final and most thorough defence comes in the form of a conveen or ‘condom catheter’. This is attached to a 500ml leg bag which is secured around the thigh. Although this is usually successful at alleviating the immediate flood risk, explosions and leeks are not unheard of, so stress free they are not. That said, they are certainly my go to when at events or on long journeys, and without them I would struggle to attend a lot of things I do.

With more experience and some forward planning accidents are getting rarer, however that doesn’t mean that they don’t happen or that there’s any less stress involved. I’m hoping with time that I will continue to see improvement, and I guess that even if my bladder doesn’t start behaving itself, my mobility will, so getting to the toilet won’t be such an issue.

The complexities of spinal cord injury go much further than the obvious movement. If you ask anyone with an SCI what part of their injury bothers them most, the majority will tell you bladder, bowel and/or sexual function. These are all issues that wouldn’t even cross most peoples minds as they’re not visible (unless you piss yourself in Tescos), but they weigh heavily on many others. This picture shows typically what i would have on below the surface when I’m out and about. It’s fiddly but it’s the difference between me getting on with life and sitting at home. ✌️💦

P.s. If anyone has any questions on the subject don’t hesitate to DM me.

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