I ruined my weekend

In 8 hours I am supposed to be heading to the Pride parade with my husband. But today I forgot that my life is a high-protocol-tightrope-walking-plate-spinning-balancing act of caffeine timed perfectly with high protein snacks in order to make it though a 9 hour work day. Today I ate breakfast. I had no caffeine. I made a plan to locate a parasol for tomorrow's parade to try to stay cool. A headache started pounding over my right eye.

Within 15 minutes I could not keep my eyes open it hurt so much. Within 30 minutes it took all my physical strength not to throw up. Joe brought me some toast and tea. I ate half the toast and drank a couple of mouthfuls of tea and promptly passed out for a several hours. Woke up at 8 PM and in order to stay awake long enough to eat something I had a bottle of Coke Zero. It is now 3:30 AM Sunday morning and I'm awake. Wide awake.

And Joe is stuck on chapter 11 of the NAFTA agreement and hasn't finished the paper he needed to have finished by midnight Friday, so he's not going to the parade tomorrow. I don't know if I will be awake enough to go, I'm not sure how hot it is going to be, I'm kind of scared about going out in the heat like that unattended, and I did not get the parasol I should have for being out in the sun.

I'm banging away on this laptop in bed trying to get these worries and disappointment out of my head in hopes that I will find the ability to sleep and more importantly wake up in the morning in time to get suited up for the parade... if I am brave enough to head out in the sun without someone with me.

This is how my brain works

I have the drum track from this with the lyrics to this playing over it.

This is the weirdness my brain just comes up with spontaneously, because I haven't heard either track in months, if not years.

Profound desire...

to smash my head into this keyboard.

I find this all so frustrating.

I don't have words for this.

I have talked to my psychiatrist this week, and that's never a great time for me.

Apparently I'm just supposed to be grateful that the MS is stable and there are hundreds of thousands of people worse off than me right now.

So that's what I am going to do.

I spent some time on the phone with one of my healthcare professionals today. The progression of this phone call was a direct result of yesterday being my birthday. I am currently in the middle of what has become my annual existential crisis. It happens to coincide with my semiannual check in with my nurse when she asked about my mood. I was bored at work so I told her the truth. Her response was exactly this:

“Lori, maybe you just have to come to accept that there are some things you aren’t going to be able to do every day. Instead of habits, maybe what you need is discipline to start again after you have to stop.”

So that’s it.

I set up schedules, to-do lists, reminders and book appointments with myself. I start off really well, but then something happens:

Like I have a great exercise schedule going for four weeks and I’m on top of all the tasks I need to get done around the house and then out of no where I can’t keep my balance anymore, my calves go into spasm with every flex and I can’t safely lift a weight over my head. This goes on for close to three weeks, when I just give up and write myself off as broken and my house gets dustier and the clutter just moves around more;

Like I get all these healthy meals and plans together and it goes really well, until we have one bad month with bills. Then it’s food on the cheap and fast food lunches, because they’re the only ones around for $5 or less. I’d pack lunches to take to work, but my boss won’t let me cook food at work or eat at my desk because it makes the office smell. (Yeah, I know.);

Like I get this amazing morning routine together and then my body becomes broken and don’t have anything healthy for breakfast, I’m terrified that exercise will break my body further and I won’t be able to get to work, so I end up waking up in the morning unable to bring myself to do anything but slide into clothes, pull on a hat, guzzle a cup of tea and stagger to the bus stop;

And like when I start to fail at everything I want to be good at I end up swimming in this vat of sticky oozing self-loathing and anxiety that keeps me up until the early hours of the morning, wired on all the caffeine I had to drink all day to keep from falling asleep at work.

I realize that if I am going to have to type at work, some nights I am not going to have the nerves available in my hands/wrists to work on my book that night. Sometimes I will really have to rest them and not be able to type much at all on Saturday as well. But I can bang out a couple of hand written pages each day on my lunch hour. I go for a walk every day it isn’t raining or too hot (which gratefully is most days).

It doesn’t feel like enough. It is going to take 60 days for me to write my Book in a Month. Perhaps even longer. Tomorrow is payday, so fresh fruit and vegetables for dinner.

Friday night.

For the first time in what feels like half a lifetime, I am spending my Friday night trying to lay the groundwork for what it is I want to get done over the weekend. Here it is, 10 PM and I'm about 1/3 of the way done. I think I'll be up until midnight.

I'm hoping to get about 5,000 words written between tonight and Sunday at midnight.

I'm hoping to get two x-stitch prototypes completed in the same time.

I'm hoping to get my bathroom cleaned and my kitchen floor washed.

I'm hoping to get in a walk with Joe and an upper body weight-training session.

This is the weekend I'm going to figure out what the difference is between "MS-kicking-my-ass" and "Fuck-it-I'm-just-lazy", I'm banking on it.