A MeSsy day
Sometimes I forget that I’m disabled. These last couple of days I really did forget. I know that this is a privilege and I’ll not take it for granted. I went out to see dear friends and I forgot I was disabled to the point that I forgot to take any catheters. I was fine, it was a good day.
It was a really good day.
But not all days are this good, and today the disease reminded me who’s boss. The day started and my sleep was disrupted. Nightmares and interruptions and dropping in and out of sleep. I knew things weren't right.
When I awoke my eye hurt and my vision was blurrier than usual. I mean most of the time looking through my right eye makes it look like it snowed… inside… but this morning reading through either eye was something of a challenge.
My left hand is numb. It always feels like I leant on it for too long but right now it feels like the cast of Le Miserable severed it during the night mistaking it for the head of King Louis-Philippe. I guess it does kind of resemble the French monarchy… if you really squint.
I’m a little stuffy, so it could be a super minor infection, the most mild of colds brewing. Such a simple thing that once was so innocuous, now a temporary catastrophe. My immune cells are alerted to the threat and immediately begin charging straight at my nervous system. It turns out that my nerves look a lot like a cold. You know, if you really squint.
This is known as a pseudorelapse.
The worst symptom that flares during a pseudo is one that is usually reserved for too much use of the legs. If I stand for too long or get too hot my core destabilises and my stomach pokes out, and the bulging is deeply uncomfortable, painful even. Right now, it doesn’t matter if I’m too hot, I’m splurging out like I’m made of taffy.
It’s hard to feel at all ok in these moments. When the systems start to fail this badly I start to panic. Is it a relapse? Is this my new normal? Can I tolerate this being my new normal? Please don’t let this be a relapse. Can I afford to take time off if I can’t sit upright? If I hunch over my desk does it feel any better? If I sacrifice a small animal at an obsidian altar at midnight can I summon the fates to give me one fewer sclerosis, please?
But my pleading is useless. No one is going to save me.
No hero is on the way.
I’m sorry, dear reader, but sometimes the emotional experience of it all is overwhelming. Today is a MeSsy day, and there’s nothing I can do. I don’t get to choose what happens next.
But I remind myself that our progress isn’t over just because of one bad day. I’m not done yet, and if I want to earn the ability to thrive I’ve got to first get off the mat.
I find my reso…
…nope it seems my psychology has replaced my resolve with full panic. I was totally ready to get up and go work out in the Roci, blast music in my ears and remind myself what I’m capable of when I tumbled inadvertently into despair. Sometimes I guess you've just gotta totally freak out and burst into blubbering tears.
I sit on the toilet, music in my ears, catheter in hand, holding my stomach with the other. Tears just begin falling. It's all suddenly just too much.
People sometimes think me resilient. I’m not sure I feel very resilient right now. Maybe being resilient isn’t about strength, or an ability to not freak out wholesale. Maybe resilience comes from emotionally detonating and then putting the pieces back together. I mean let’s hope.
Resting in front of the tv my body begins to recover. My strength returns. The pain subsides. My resolve crawls back to me, looking sorry for itself. I refrain from asking it where the hell it has been the past couple of hours.
And I rebuild. I remind myself of the countless trials we have overcome. Dealing with chronic pain, learning to wheel instead of walk, catheterising thousands of times a year, losing the vision in one eye, freaking transition, getting a doctorate… with each fall we have risen again, harder and stronger. And I know there are foes in this disease against which I have not yet been tested. But if nothing else my life has been good practice.
The really scary thing is that I feel like I’m doing so well, but maybe that’s because I’m not in pain. Today I was in pain and I didn’t do very well. Pain is never far away.
Get out of here, you French revolutionaries, I said pain, not pain!
I guess there is no way to know how resilient I’ve become. Maybe the next relapse is where it all goes wrong. Maybe I’m experiencing the ‘good times’ right now, the times I’ll look back on rosily when my world implodes.
Or maybe I'm finally inured to the complete unknowns of the future…
…
Nope, not yet.