Today, I’m REALLY fed up with washing the wet bed. He’s 12 and I’ve surely experienced every emotion possible about the nocturnal toileting. The patient acceptance when he was younger (because there were so many more pressing problems, e.g. daytime toileting and the irrecoverable pants) which then turned into irritation, anger, brief moments of joy (when he didn’t wet for a week), disappointment (when he did wet again), fear (that this may never end) and then, today’s tired frustration. The seven stages of nocturnal enuresis.
As always, I am aware that there are worse things to be living with and I’m also aware how far we’ve come with toileting (pants only fit for the bin are now all but past). But often it’s the small, ongoing challenges which drain the most from my reserves.
Mostly he wears nappies but isn’t always willing and I wonder how long he’ll fit into the gigantic toddler range and when will we have to take the leap into adult (in)continence supplies. (Cost is also a bit of a factor. I’ve taken to buying Tesco’s Everyday Value nappies – just £1.40 for 20! They’re nappies without a jaunty picture on so we’ve taken to calling them Prison Nappies, general issue (in)continence supplies.)
Unsurprisingly the professional advice re nocturnal enuresis in Fragile X is unhelpful; Drink more! Drink less! Wake him late! Wake him early! Keep a diary. And of course my old favourite – Star Chart! Nothing makes any difference and apparently the two medications available aren’t appropriate for him.
So we go on, the house smelling faintly of wee, my washing all somehow smelling faintly of wee, his mattress delicately patterned with faint yellow blooms, the duvet gradually absorbing excess and smelling gradually more strongly of wee. I optimistically bought a new mattress six months ago. It’s still propped up in the back room until a time where either a) I get fed up with it being propped up in my back room b) I don’t care if it gets trashed or c) someone finds a miracle cure for bed wetting in FX.
Most likely he’ll do it in his own time, just like he’s done everything else, with no definable explanation or obvious reason. At which point I’ll be free to move on to the next thing to stress, rant and obsessively Google about.