Brain. Full.

I've been writing content for my website. I've been trying to find a job.

I sleep. I type. I send emails. I sleep. I type. I clean something. I sleep. I type. I stitch some.

I watch The Golden Girls at 1 AM. Then I sleep again.

Tomorrow I will add laundry and an evening meeting into the mix, because I'm a real wild one an' I like a wild fun.

I'm feeling 100% better about my life in recent days because I made a plan back in July, and despite losing my job and struggling more financially than I thought I would be at this point in the plan, I'm following through with it.

Barring any technical difficulties I will launch my website on December 3. Hopefully there will be a new job just around the corner. Please, please, please let there be a job right around the corner. I have big plans. I need some financial stability to keep the plan moving.

My sleeping pill is kicking in. Maybe I'll be out cold by 2:30 AM. Maybe.

Incapable

I don't know how to do a lot of stuff.

I have a mental picture of *exactly* how I want the organizing/checklist/homekeeping website/blog to look and how all the other marketing and business collateral will look to complement it but I just do not possess the tools and skills in order to make it real.

I have come to the conclusion that I am going to have to hire someone.
That means that I can't do anything but write plans and pretend that things are going to go as planned and pretend that I'll have a job in time to keep the plan on schedule.

I'm losing hope.

Symptom Log: Day 15

• Footdrop (Foot drags along floor during walking)
  
• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
  
• Sleeping Disorders
  
• Inappropriately cold body parts

The footdrop continues to drive me f'in crazy. That's the symptom that bothers me the most when it happens outside my house. It bothers me because I know that people judge others' mental capabilities by what their physical capabilities are. I will tolerate a lot of judgments by other people, but I would rather die than people think I'm mentally impaired.

The symptom that bothers me the most is the confusion that stems from my cognitive problems. It has really effected my realationship with Joe because he thinks I'm just being difficult and trying to start an argument and I'm just trying to figure out what's going on and where he's going or what he is doing.

The symptom that will be the end of my marriage is the sexual disfunction. This is worse than when I was on depo-provera. That drug, I am convinced, prevents pregnancy by ensuring that you have no desire to engage in sexual activity. MS, I am convinced, is a cruel universal joke that prevents people from having any enjoyment out of life that doesn't require vast amounts of street drugs.

The symptom that terrifies me the most is the one that hasn't happened yet. What if I wake up tomorrow and I'm blind? What if I wake up tomorrow and I can't walk, or my left side is completely paralized, or I can't feel my face, or all of the nerves in my chest and back are screaming in pain, or etc. etc. etc? The uncertainty is what is killing me. I can't commit. I can't make plans beyond 6 hours from now. I can't get excited about the future.

Now that I am 1/2 the way through this project I wonder if I even care anymore.

I have a couple of really well meaning friends who tell me to live in today and be positive and happy now and I have a couple of really well meaning friends who have sent me links to research findings and tell me that tomorrow is another day and I will rise up, embrace and accept the cure that will come.

To me both of those ideas are as absurd and unlikely as George W. Bush leaving Laura to get married in Iowa to Dick Cheney. They are mutually exclusive. There is no hope for today if all I've got to live for is something that might or might not happen 20 to 30 years from now. There's no point in wishing for a better tomorrow if I can somehow manage to lower my expectations for today and accept what I've got where I am.

Wednesday brings another round of "Are we expending the right amount of resources on Ms. K?" with the MS clinic social worker, with a drop in by the nurse, the PT coordinator and the pharmacologist. 

If there is a bigger waste of time than dealing with MS in a way that "they" want you to deal with it, I have yet to find it.

How soon is now?

I imagine doing all sorts of destructive behaviour these days. Every time Joe comes in from outside after smoking I feel envious that I am "not allowed" to smoke. I haven't smoked in over 18 months and I think about it more and more every day.

There's nothing that I would like more than to spend the rest of my life drinking, smoking and enjoying prescription medications. I believe the term is "Comfortably Numb".

Sadly, I don't have the budget for such an endeavour. Mayhaps I should start buying lottery tickets just to fund it?

Three words:

Re-prioritize
Redefine
Adapt

On one hand, I'm told that I need to do these things so I can be "happy".
On the other hand, I'm told that I have to go slowly, patiently and scale back my expectations or I'll never be "happy". Live in the now, she says.

NOW SUCKS. I don't want to live in this Now. I want to live in someone else's Now. I've been trying to live in some other Now for my entire fucking life, and now I'm told that I absolutely have no other fucking choice but to live in this one?

I give up. I can't live like this and I can't live the way that I want to. I will call the authorities that need calling tomorrow morning. I'll try to fake some sort of hope to save those around me from any sort of discomfort. Today is the last day I talk about anything negative in public.

Only sunshine, lollipops and rainbows for this woman... or she'll say nothing at all.

I am an Atheist

As part of OutCampaign.org's "I am an Atheist" campaign, Friday, March 20, 2009 is the first online "out" day for various non-religious/non-believers on Facebook. It's migrated to the blogosphere over the day and I'm pleased to be a part of it. In short:

"We rally for freedom of thought, the right to believe and not to.

We rally to erase the social stigma around nonbelief.

We rally in solidarity with those who live where freedom and equality for nonbelievers is only a dream.

We rally to tell the world: we are nonreligious, we are equal, respect us.

This is not a hate rally: we are against false beliefs, not those who believe in them. Intolerance will not be tolerated."

I didn't really take all of this too seriously until I saw Montel William's appearance on the Oprah show on Tuesday and had been evangelized to via email. And now my dander is up and my ass is chapped.

First off, MS is not a gift that has given my life meaning. I was not "given" MS so I would return to serving my lord and saviour. As a non-believer, I question whether there is an actual meaning or reason for existence at all. If there is a "greater meaning" it needs to happen in this life, now, rather than in some fantasy place after this life is over or in some future life where I try and work out the problems of this one.

To say that a disease is a lesson is to fudge the truth. Yes, there are problems in the environment, in the food systems and with lifestyle choices, but to act as though MS or cancer or HIV or whatever is divine retribution for the abuse of the planet or (more often) for the abuse of one's body is as bad as holding out an $85 a week colon cleanse as the solution to someone's problems. Or a vitamin, diet or exercise program as a cure-all to viruses and disease. Jesus/God/Higher Power are just as futile and false hope as any of the whack-job "cures" I've been offered over the past 40-ish days.

I know that in some circles, quoting Karl Marx is a conversation ender but here it is.

Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.

Marx, K. 1976. Introduction to A Contribution to the Critique of Hegel’s Philosophy of Right. Collected Works, v. 3. New York.

Offering me religious redemption is as offensive to me as offering me platitudes or junk science to treat my disease.

I've been accused of being miserable and not wanting help. That is simply not true. I want help I can use. I have no problem with having to adapt my life to my disease, but telling me that babies, disability pensions and volunteer work are "fulfilling" and meaningful is a slap in the face. That may be *your* life; it's great that you can find some contentment in that, but that is not what I want for *my* life.

I am an Atheist. It's funny that the Holy Roman Catholic and Apostolic Church, the 12-Step movement and neo-paganism helped me get there, because I'm fairly certain that wasn't their intent. I am also very against peer-support as a result of my attempts to deal with sexual assault, drinking and drugs, mental illness and quitting smoking. With my experiments in trying to find someone who isn't completely Pollyanna about MS and a fully functioning person with a life not defined by MS, I'm convinced more than ever that peer support is how you keep the sick, sick.

In summary, if you've got some useful and practical suggestions about how I can retain my sense of self, keep at least some of the things I love in my life, and how I can get and stay well, then I'd appreciate your peer support. I'm not getting any better. My condition has not changed since my first post about the improvements. I need useful solutions in order to deal with this.

But if all you've got is "you gotta change", "your life as you knew it is over, suck it up princess", and/or "pray ta Jeesus", you aren't my peer.

As a side note, I'm working on a project with the MS clinic's social worker to find something to be inspired by. Since personal stories don't really do it for me, I've decided to find inspiration in music. I've asked my friends who've expressed an interest in helping me to send me a single mp3 of a song that inspires them. Since last night I have collected four songs. As a result of this project I am now using my iPod as a defence mechanism. Here's the song of the day:

No way of knowing if she's ever coming back
No way of knowing if I care or not
No way of knowing if she's right or if she's wrong
No way of knowing if I'll carry on
And I'm alive
And I'm alone
And I've never wanted to be either of those

Alive Alone - The Chemical Brothers - Exit Planet Dust

"I haven't been afraid of dying since I was 16...

With MS, for me it's the living part that puts me on my knees."

Woman's post on the internet

(From a cool forum site that did not originate the spam.)

What if I'm simply not interested in having a new "normal" life?

A life that doesn't include anything that I like, love, am interested in, or am good at doesn't seem like a life worth living.

I can't read a book for more than 15 minutes. I can't walk if my temperature reaches 99 degrees, so I can't exercise. I can't do my job because I can't work more than forty-five minutes without a rest. I can't remember what happened to me last week. I talk about BC when I'm telling a story about something that happened in New Brunswick.

My hair and skin are a mess. I can't wear any of my old clothes or shoes. I can't watch a movie on a large screen because it causes double vision. I can't stand in one place long enough to enjoy an art exhibit. I can't have more than one glass of wine in an 8 hour period. My husband and I might as well be roommates who give each other hugs, pecks on the mouth and pep talks.

MS has stolen EVERYTHING that I love and is important to me. It's stolen every dream and aspiration I had for the future. This is my new reality. I don't think, act or look anything like I did 6 months ago. I don't know the person I see in the mirror, and I want her gone.

I used to be fabulous. Now I'm not. What do I have to do to get the old me back?

Based on most accounts, there's nothing I can do. This is it. This is "me, with MS". I don't want to settle into a disability pension and a "fulfilling" volunteer job. I don't want to have kids and build a family. I can't and won't find meaning in serving the lord.

Everyday I look at job postings to see what's out there these days, and I realize that even if I improve I won't be able to do anything that I am actually qualified for and experienced with.

Where and with what does that leave me?

I fear a disability pension and a "fulfilling" volunteer job.

Judging

I try really hard not to judge days, feelings, emotions, activities and practices as "good" or "bad".

Today is a day where I am really struggling with that. All the gains I've made in the past two weeks have been erased over the past two days. I'm using my cane again. I'm both sleepless and fatigued. Cognitive difficulties mean that this is going to be a short post.

It's probably just because I'm now in the crashing immune system phase of the mito treatments.

I had my first emotional outburst yesterday in quite some time which was almost immediately followed by my left knee giving out and my vision blurring.

I was running on five hours sleep, and by hour ten of my day other abilities started collapsing. Yet I couldn't fall asleep because the dreams of falling on the pavement and smashing my teeth are back.

Today, all the stuff I lost yesterday hasn't come back. It's not any worse I don't think, but it's not here. I want to do a load of laundry, but I know I can't do it by myself and Joe's up to his eyeballs in school work. To ask him to help around the house seems selfish, because it's not like what he's got to do is a 40 hour a week job. He's writing papers, reading, programming and web developing. I'm staring at the internet almost every waking hour of the day because I so desperately don't want to be alone.

I'm an extrovert who doesn't like or trust many people. I don't have many friends and the friends that I do have either don't live in Vancouver or have their own personal soap operas to deal with. If it were not for Facebook, the only person I would talk to each day is Joe. Maybe Simon a couple times a week. But yeah, this is it.

This is my life.

I only realized a day or two ago that someone I know saw me like this. I am horrified that those friends saw me, my house and my life in such shambles. If I had been in my right mind I wouldn't have had them here.

I was thinking that this weekend would signal the start of me reclaiming my life but it's obvious that's not going to happen because I can't walk. I'll be lucky if I make it to this evening having been able to make it in and out of a shower. I have clean sheets that will just have to wait until I get better to be put on the bed.

It feels like I've stacked 80% of my old life on a chair; for use after something called "better" happens.

Maybe I can donate that old, unused life to the Sally Ann. I'm sure they can find someone who could benefit from it.

Fast Fun Facts about MS

Two out of three people with MS are women.

Your odds of getting MS increase by four times just by virtue of being born north of the 40th parallel. Canada has one of the highest rates of MS in the world.

According to 2007 research, only 24% of people with MS are wheelchair bound, and usually 15 to 20 years past diagnosis.

I have been told that finding comfort in the statistics about my condition is a tad odd, but I do.

As most people don't get MS, I've already beaten the odds. So, the likelihood that I will get the worst and most severe forms of the disease are even less. I'm also really fortunate that I'm under 40, living in a country with socialized medicine and great amounts of research dollars, in a province with Pharmacare, in a city with one of the best MS clinics in North America, and can survive on federal income supports until I can find a new job later this year. I shudder to think what our lives would be like if we were living in the US with Joe full time in school and me getting forced out of a job with no insurance benefits.

Seriously, think about that. Our lives would completely suck in so many ways I haven't even been able to fully imagine how much that would suck.

Don't get me wrong, my life is sucking pretty hard right now, but I think that we've plumbed the depths of that suckage. Unless something goes radically wrong before June I think we've seen the worst of the disease for the next five years or more.

I am fortunate to be diagnosed in 2008. If I were diagnosed even in the year 2000 I would not have the opportunity to get the drug I am currently on. I've been reading some phase 3 drug trial information and there should be oral medications that work better than the injection drugs we have now available mass market before I turn 40. There's a lot of holistic research being done in BC regarding exercise, fatigue relief, cannabis, nutrition and the like. In May I find out if I can be considered for some of those research projects.

I've decided that if they can't find a cure in my lifetime I want to be a part of trying to find one for the next generation. I want a cure, and barring that I want a treatment that's like the insulin for MS. I want to be able to manage this, and I guess that's going to be a process.

The social worker at the MS clinic gave me a nutrition article telling me to eat lots of antioxidants, omega 3 fatty acids and drink a glass of syrah, cabernet sauvignon or pinot noir a day.

As someone who loves bright fruit and berries, sushi and avocados, and red wine... eating for my health is going to be a real pain in the butt. ;)

I'm not really good at looking on the bright side of things, but I'm pretty good in a crisis. I'm not interested in becoming a motivational speaker or lying to people about what I'm really going through. I've always said that I am a realist not an optimist. I'm not supremely confident in my ability to want to live. That's the biggest one. I'm trying, but finding the will to live and actually do something with my life seems unlikely.

I'm not noble and things less than MS have destroyed my life to the point where no matter what I do my life will never recover. I have been brought to my knees by things far less than this disease and spent years in the abyss of depression, self-destruction and poverty.

Many people told me that the first year after diagnosis is really difficult but once you find your "new normal" you learn to deal better. That's probably true.

A year can change so many things.

Forward motion

Joe and I went to Ms. Lina's art show closing this afternoon. We had a glass of wine, learned about methodologies and mediation, and then went and had a burger and fries at the greasy spoon down the block from our house.

I walked from 12th Ave to the equivalent of 19th Ave. That's 7 blocks. I walked them and my leg didn't go floppy. It went floppy shortly after arriving home, but it didn't stop working while I was outside of the house.

I've had no further side effects of the treatment. Every day since my treatment I've woken up with more energy and more or longer lasting abilities.

If I can't find something worthwhile to do with the rest of my life, it may just be all a waste of time. I've got to use these physical gains while I've got them, because goodness only knows how long it will last. The nature of MS is one of uncertainty; a level of uncertainty we all have but don't have to acknowledge. Tomorrow I might not be able to walk, or talk, or see. It's not likely, but it is not outside the realm of possibility. Tomorrow you might be hit by a bus. Again, not likely, but not impossible. Having MS just seems to make me more conscious of making plans based on what I can do today, while always having to remember not to plan the results because I might not be able to complete those plans tomorrow.

I've been thinking about the future, and trying to figure out in what direction I want to direct my energies. I need to consider what I need to be fulfilled along with the ability to take this new direction and earn an income on either side of the Canada/US border. I think that I'm putting together some ideas in my head.

If the personal is political and vice versa, then there are a couple of ways I can put what I am interested in to good use. I believe very strongly in health education, as in physical, sexual and mental health. I also believe very strongly that governments and communities play a big role in influencing the public.

There's got to be a way to combine public health with public service. There's got to be some way of making health a political issue.

Yet I think that these are just the musings of a cognitively impaired mind.

I'm pretty sure that no one other than me is interested in this shit.