Not quite what you’re thinking…

Contrary to popular opinion, having a condition like Multiple Sclerosis is SO much more than just being in a wheelchair or walking with a cane. I’ll give you a little snippet of my daily life (don’t worry, I won’t drone on):

• Vertigo 🥴🤮
• Electric shock sensations ⚡️
• Clonus (when your leg bounces uncontrollably) 🦵
• Excruciating spasms 😖
• Debilitating fatigue 😴

For me those are just a few of my daily “normal” but I can attest that by far THE worst are bathroom issues. I’ve debated writing this for a long time, there are people following that know me after all, but for so many MSers this is par for the course and it’s REALITY. Just like the nerves that feed our leg muscles are affected by MS so is our pelvic floor. Pissing my pants isn’t something I expected to be dealing with at the age of 42, especially as I’ve not even had any kids, but here we are. I moved into our bungalow a little over a month ago and within a couple of days christened it by wetting myself on the way to the bathroom. I don’t mean a little bit, I’m talking splish-splash on the tiled floor while begging it to stop. Thank fuck I don’t have carpet!

The other issue, much less acceptable in society, is the “number 2’s”. The pelvic floor is essential in controlling both so I’m painfully aware of the danger of shitting myself, particularly when I move like the rusty equivalent of a fucking snail!

There’s nothing more motivating than needing to “go” when you’re stuck on the floor. But knowing full well you need a good 20 mins minimum to get up and to the bathroom makes it a full on panic-stricken scrabble. To add an extra layer of fun, any injection of adrenaline makes my body rebel by becoming MORE stiff (yes, apparently that is possible!) so I have to remain calm, breath deep and move slowly and deliberately… can you imagine how bloody difficult that is when you really need to GO?! I had to get my husband out of bed the other day to help me bend my legs, afterwards he then offered to help get me up but with the situation becoming critical I had to send him away just in case I had a accident… it’s bad enough it could happen without a friggin witness!! I cannot articulate to you how distressing it is as an adult to feel like you’re actually going to shit yourself. It is truly horrendous.

The continence service advise to do pelvic floor exercises (or Kegels) but, much like trying to lift my legs, the nerve pathways are damaged and my ability severely limited. Otherwise it’s “wear incontinence pants”. Let me tell you, they aren’t like what you see on the ads- they are literally adult pull-ups. Cue waddling around like a toddler.

So yeah, for me, the bathroom issues are by far the worst symptoms to deal with. I dread the day I get a stomach bug!! That would be very motivating indeed!

I saw a meme the other day and it couldn’t be more relevant:

“Im fed up of dealing with things that don’t kill me but supposedly make me stronger.

I’m tired.

Piss off”