A Week In Review

I did four things differently last week.

1. I wrote every single day. I worked on blogs. I worked on a couple of longer/larger works I've been kicking around.
2. I turned off the notifications on my smartphone except for the ringer. I went from 8 AM Monday, August 4 to 8AM Monday, August 11 without being signaled by my phone. I only used it to answer calls or respond to messages (Hangouts, SMS) sent directly to me.
3.  From 10 PM Friday night to 10 PM Saturday night I did not use technology. My smartphone was off. My laptop was off. If I owned a TV it too would have been off. I went "No screens" for 24 hours.
4. I started x-stitching again. I'm using someone else's pattern to get my hands/fingers nimble again, but I will start creating new patterns next month.

So what does this all mean?

     a)  It means that my brain is less foggy.
     b)  It means that I both appreciate and respect the screens in my life a little more.
     c)  It means I got a METRIC SHIT TONNE done around the house.
     d)  I really enjoy stitching swear words and odd things into fabric.

Ultimately, this is what I learned:

1. My brain, some days, is not as broken as I think it is.
2. My Pavlovian response to my smartphone notifications isn't strong. That's actually a surprise. But I appreciate what they do for me to make my life easier and respect the fact they can also allow me to fuck up my day fast and efficiently.
3. I require 7 hours sleep to properly recover from a day of light activity. I require 9-10 hours sleep to properly recover from a day of heavy lifting and physical activity. This helps me with my time management more than I can possibly explain.
4. I really, really like to swear. A lot. Like as much as I love coffee and baked goods, I love to swear.
5. I really love lists, too.

The Big Reveal - One Year MS Clinic follow-up

1. My brain is still there.
2. MRI comparison between September 2010 and April 2013 is stable; no new lesions visible, brain mass remains unchanged.
3. Improvement noted in gross motor skills on my left side, though some deficits continue with my small motor skills on the left side.
4. No change in left side weakness.
5. No change in spasticity in my legs.
6. Improvement noted in nerve sensitivity in my hands and feet.

My neuro gave me a list of six (6) recommendations for my next year with MS.

These suggestions are based on the known best practices for people with MS and based on the findings presented last weekend at a conference of MS research academics. I think you will be surprised by some of them.

1. A multi-vitamin daily.
2. RDI levels of Omega-3 (animal based, not veggie derived) daily.
3. 1000 IU of vitamin D daily.
4. Mediterranean diet at least 5 days a week, 50 weeks of the year.
5. AT LEAST (bold AND underlined) 15 minutes of exercise - cardio activity - every day.
6. Get back on Copaxone until I can afford Tecfidera.

EDIT, 1:57 PM: I missed this part of my notes... My neuro did some balance testing and recommended I get a bike. A REAL BIKE, with just two wheels.

Thus ended The 2013 State of The Brain Address, with a hug and best wishes.

Of the few things I will miss about British Columbia, my neurologist is one of them. She's been amazing and awesome and I am so fortunate to have been a patient of hers. She will be taking some new patients at the MS Clinic. If you want to change, or you're looking for a new MS specialist neurologist in Vancouver, BC, I could totally hook you up).

So, it's nice to know that my disease seems to having taken another year off. It's been four years since I was diagnosed, so we'll see what happens in this next year.

BRAINZ! An Update

I had my 6th or 7th MRI since November 2008 today.

No contrast makes me happy. I don't like nursing an IV hole for three days.

My neurologist will give me The State of the Brain Address, as she does every year, on April 18.

My hope is she does not insist on referring me to the closest MS clinic to where I am moving. London, ON is two hours from where I'll be living and is NOT convenient. I would like a local neuro, and I'll get a referral to a clinic when we move closer to one.

***

One year ago I was flying to Chicago. I listened to Katy Perry all fucking day to celebrate.

***

I hope that dinner and some caffeine cures this tired I have. I have an art show to go to in a couple of hours.

The monsters are crazy.

I have assembled on my queen-sized bed the collection of every DIY, self-help, How-To and planning book I currently own.

This is a collection of 27 books. This does not include the countless books I borrowed from the library or the 10 or 15 books I put in a donation bin about a year ago. This also doesn't include the books that I have borrowed from friends or managed to leave somewhere on public transit. Nor does it include the 2 or 3 e-books I have stored on my hard drive, or my previous membership with Flylady.net and an endless browsing history of sites like eHow.com and About.com. These books are just the ones that I love and use as reference, the ones that I bought and haven't had a chance to read, and a couple that changed my life.


At the book store on my lunch hour, I considered what was in this pile of good intentions and "I had what alcoholics refer to as 'a moment of clarity'", which is kind of ironic since I did a few years in 12-Step recovery in my second attempt (at the age of 19) to fix my failing life. But in this moment today I realized that without order, I am batshitnuts. Love a numbered list, a colour-coded to-do list, a daily agenda of times, places and people, and a plan of attack that includes my personal affirmations:

1. If it will take two minutes or less, do it now.
2. If you take it out, put it back.
3. If not now, when?

(I have more personal affirmations, but those are the ones that are in the back of my head throughout the day.)

I go through what I don't know what else to call but a crisis of faith twice a year. Once in late December, as I realize that yet another calendar year has passed and I am nowhere closer to a fabulous life and again around my birthday, when I realize that yet another year of my life has passed and I am nowhere closer to the awesome life I want. I keep trying to ignore the fact that I don't exactly know what "fabulous" and "awesome" look like as a reality in my life other than to say that I will know it when I get it.


Getting diagnosed with MS has made these periods of crisis heavy. I feel that I must finally get it right this year because I might not be able to walk next year. I might go blind next year. I might lose my ability to think and reason next year. I might be any number of bullshit things that are possibly when you have this life sentence hanging over you.

I feel desperate to get it right. To find the order and the help in all these books and the internet and what I know to be true to make something worth living out of this life of mine.

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.

Avoidance

I've been feeling like crap for about a month, which culminated in getting a horrible cold (flu?) over the past few days. I started coming down with it on Tuesday and by Wednesday I had a fever, chills, aching body, stuffed up sinuses and a barking cough.

But mostly I've been avoiding the page. My blog, my journal, my book, the books I am reading, it doesn't seem to matter.

I don't know what the hell I'm doing most days, so tomorrow I am going to watch "Polytechnique" and see what kind of mental fire that lights.

Other than that I've been contemplating and immediately rejecting the following ideas:

1. An economics degree
2. Looking for a new job
3. An English degree
4. Looking for a second job
5. Some sort of vocational training
6. Having a nervous breakdown
7. Shaving my head
8. Staying in bed for a month
9. Colouring my hair blue.
10. Developing an eating disorder

I have no idea what to do with my life. All I know is that I am in a holding pattern until Joe gets his first post-degree job. Until then, I just wake up in the morning, meet my spousal obligations throughout the day and go to bed.

Looking forward to going to and from work in the dark starting Monday.

Fer sher.

36

In one week I will be 36. Barring some sort of disaster, I will have exactly doubled the life span I had planned on when I was 17.

I can't really explain to anyone the screaming that is going on in my head. I want to speak, to tell, but I can't because it's a secret/it's private/it will hurt someone/it will hurt me.

Every time I open up this "new post" window I hear a voice in my head say "You'll never get a job, ever, if you keep this blog."

What the hell makes that voice think that I'm ever going to apply for a job that will require a google search, I have no idea. I'm damaged goods and as such I've given up on having much of an interesting future.

The heat of the day didn't do as much damage as I thought it might, but I did get some weak limbs that were harder than normal to control and a little bit of cog fog. Nothing too tragic though.

I'm not looking forward to the next few days of over 25 degree weather. I can deal with it, but my skin just hates the feel of breezes on it so I have to wear long sleeves all the time. Sometimes I can get away with a 3/4 sleeve if it's not too windy.

Amy tagged me on a note called 25 random things. I am tempted to follow up on that, but right now my braynz are just too raw to fill it out with anything more than all the screaming.

Posting screaming in public will alienate me further from the human race. I'm trying to be better at relationships.

Crazy

My brainz don't feel so good.

The physical symptoms are easy to ignore these days, but having a thought or memory is becoming increasingly difficult.

Apparently, there's nothing they can do... I just have teh dum.

I'm pretty sure that this is now the worst thing about MS now that the fatigue isn't an issue. I find it difficult to live like this and be at all interested in life or the world around me.

I am seriously considering giving up the news and my twitter account because I can't think logically or critically about the world around me. I can't focus long enough to read more than a few paragraphs out of a book. I can't put coherent sentences together; often putting different tenses and switching from the first person to the third person and back again in the same sentence or paragraph. I'm so tired of feeling stupid all the fucking time.

World MS Day and things that are apropos of nothing.

(insert sound of one single party blower here)

I've been on Copaxone for one month now. It was really uneventful until yesterday when my injection site on my right arm was hard and itchy all day and it continued into today. Don't what that is about, so I'm going to call my Copaxone nurse tomorrow.

My symptoms are stable for the most part. Still numb fingers and toes, wonky left leg, sketchy balance and a spastic left calf. Ray of student RMT fame has been working that calf and my feet with massage therapy and I can feel my leg unwound for days a time now. I can't meet with him this week and I'm sure I will miss it.

--

I've been thinking a lot about secrets these days. I think it's because I've started writing again and my opening sentence from yesterday isn't something that I think my mother would be pleased with and I think that my grandmother would have a stroke at the mere idea of it.

I realized that for me to really write publicly about what I want to write about must wait until my grandmother has passed and my mother is senile. That makes me sad because that's going to be a long freakin' time.

I've done very little in my life that I am proud of. Two of those things have to be kept secret for the time being (See: Grandmother). The other two are really only impressive to me and that is it. Four things.

I find that I have lived much of my life waiting for better days because the present has been so crappy. I still feel like that most days I am at work. That tells me that the antidepressants work to keep me from killing myself but do not give me a false sense of happy.

Which is kind of a relief now that I consider that.

Next month will mark a year on Wellbutrin. Given how much generalized anxiety I've been having lately I'm planning on making another trip to the neuropsychiatrist - this time for some Adivan and cognitive testing.

Since Joe has decided that I am going to be an economist I need to figure out what is wrong with my brain that will hold me back from scholastic success. I'm fucking stupid all the time now and I know that some of it is related to the MS and some is probably just understimulation. There's no complex thinking in my life on a day to day basis unless I go looking for it.

I do wish things were different and I do live a lot of my life waiting for better times in the future. Maybe I'm making peace with that.

And the book says, "We may be through with the past, but the past ain't through with us."