Friday, November 2, 2012

So It Begins

Okay, I give.

This blog, in case you haven't realized it by now, is about my unfortunate medical condition. I have Multiple Sclerosis. If you're not familiar with MS, it's a degenerative neurological disorder related to Alzheimer's and Parkinson's Disease. In a nutshell, my immune system hasn't got anything better to do and thinks that the protein sheath covering the nerve fibers in my brain is the enemy, so it attacks it. When it does, it makes little scars on the sheath and the signals between those cells can't get through.

Think of it like an insulated wire, like for your cable box. Outside it has a thick black cover to protect what's inside it. If you take a knife and strip that covering off, you expose the wires it protects and they either break or get damaged. That's what MS does to my nervous system.

I could go into detail about what it is and how it works, but if you're curious about all that, others have written about it in better ways. Go here and have a look around. This isn't a scientific or technical blog. This is a blog about what it's like living with MS. I haven't looked, but I'm sure there are hundreds or maybe even thousands of blogs out there written by people dealing with their various illnesses. Add this one to the list.

Why am I writing this? Because my neurologist says I should. Also, it will help me have a record of my days, abilities, symptoms and events. MS affects memory, so it will help keep track of things in that regard. MS is also degenerative, so what I'm able to do now, I might not be able to do a year from now. You get it.

Also, maybe really, deep down, I wanted a place to vent and talk about what's happening to me. I don't talk much about my condition to anyone - not even my family, relatives or closest friends. Stuff happens and sometimes it's scary.

Sometimes, I'm scared. But it's okay. I cope with that. And when coping gets a little too difficult, my doctor gave me nice little happy pills that make coping a little easier.

I tried the paper journal thing and I could never remember to update it. Here I have a blog and can set reminders to myself to update and so on.

Let's start this blog off with me and my day today:

Me: I'm a small person, Caucasian female of Irish descent. Textbook profile of "who is the most common person to get MS." While not obese, I could stand to lose about 20 pounds, and I'm working on that. My current weight is stubbornly hovering about 158, and I'm trying desperately to get down to 150 by the middle of the month. I have an arrangement with my doctor that I'd do so (an arrangement made 3 months ago) and I'm kind of slacking on my end. What? A lot happened in those three months!

I also have textbook, bog-standard relapsing-remitting Multiple Sclerosis. For once in my life I've done something NORMAL. "MS is normal?" you say. Yes. For me, yes, this is. There are four different types of MS, ranging from "you'll be dead in a year" to "barring accident or other injury or illness like cancer, you have a standard life expectancy for your gender."

It takes about a year to properly diagnose MS, and that can be (and was) a very scary and uncertain time. The symptoms of MS are vague and often taken for other things. I was misdiagnosed three times before someone convinced me to try "one last doctor." One thing you'll get to know about me (provided you don't already know me and are following this blog) is that I'm pretty resilient/stubborn/don't put up with shit, and I was tired of doctors by this point. One even referred me to a psychiatrist because he, to put it lightly, thought I was crazy and suffering from some sort of female stress issue. (So he was a sexist asshole. Oh, yeah, I should probably mention this blog will have cursing. Sorry! NSFW or whatever! I saw him only twice. He was an incompetent twit.)

So anyway, one last doctor. I went, told him my symptoms, then told him I was ready to be referred to the psychiatrist as I was clearly crazy. He just looked at me and said, "I think you have MS. Let's get you an MRI."

A year or so (and many tests and pokes and prods) later, it was confirmed. The details aren't all that important. Suffice to say I'd been suffering the various symptoms of MS for a few years by then. It was what's called a "relapse" that sent me (finally - I told you I was stubborn!) to the doctor. I was young, healthy, in great shape (a kickboxer/bodybuilder) - I shouldn't have been having the symptoms I was. I had a background in gymnastics, etc. I knew how my body worked and it wasn't working the way it was supposed to. La la la.

Medications I take for my MS include Copaxone (a daily injection), several dietary supplements like vitamins and fish oil, and a mobility drug called Ampyra that I'm supposed to be taking and forget more often than not. But this blog should change all that.

In theory I should be updating this blog daily with something like this -


AM Vits

PM Vits

Bed Vits



Water (oz)

- along with my diet (or lack thereof - one of my symptoms is anorexia. Not THAT kind - it means "loss of appetite." It comes and goes.)

Anyway, that's me. Now about my day:

Today. Ugh. It was a hard day today. I think I'll rank my days from 1-10. 1 being an easy day ("easy" for me) and 10 being one bloody fuck-all of a day (hopefully these will be rare.) I'm going to say today was a 7.

Today I skipped my shot. I know, I'm horrid, but I don't like doing that before going to the pool, and as you can see below, I got busy after, so I forgot about it. I've taken my AM vits and will take my Bedtime vits. I missed the midday ones (bad me, this happens a lot). No Ampyra. (Again, bad me.) Exercise was the pool (see below). I'm not sure how much water I've had today, but I think it's been somewhere about 20oz. I'm trying to get up to 1 liter. Today I have eaten a sloppy joe (made last night), a few Lay's potato chips, two fruit leather strips, a small piece of the Bread of the Dead I made (see below) and a piece of lemon meringue pie a friend sent over to me. (I have awesome friends!) I sent some of the bread over to her, so fair trade in my opinion.

Today I got up and went to the pool. My local gym has a therapy pool that's about 4' deep and has a deeper area for aerobic-type exercise with a shallower trench-type thing called a lazy river that has a current running through it. The lazy river is designed for walking either with or against the current, and depending on my day I do one or the other. I try to get to the pool at least three times a week - Monday, Wednesday and Friday. My goal is to be up to 6 miles in a year. 52 laps around the pool (walking, remember) is a mile. I did a mile today. I bought some pool shoes yesterday and they really help with my stability. So does the water. Normally I'm worn out by half a mile, so a mile is a big feat for me, but today I just kept on trucking. I have some friends who go with me most days, but today I was alone for the first half-mile. A friend kept me company the last half, which really helps.

I did my workout and showered there (a feat in itself, given my difficulty showering, but they have disability-accessible things there so it works out okay), then came home and headed out with my husband to do some errands. Once those were finished, I came home and put the things away that we'd gotten out on our errands. This took me a good hour or so, because I had to do some sorting and cleaning to make room for things (one of which was a new microwave, as ours had died suddenly). Then I made myself some lunch and took a nap. I laid down about 2PM (errands and cleaning, remember?), only to get back up about 4:45 because I was expecting someone. (They weren't able to come by, but that's been rescheduled for tomorrow afternoon, and will probably continue to be on Saturdays.) So I didn't get much of a nap today.

That's something else. With my condition being what it is, schedule/routine is very important to me. It helps me cope with my day and plan my energy use. The energy I have for things is very limited and has to be delegated out, and I jealously guard what little I have for things. If I know I need to do errands on a certain day, I have to plan that. More about that another time.

So, part of my schedule is that I usually lie down about 11 and get up about 5. I know this sounds cool - "Dude, you get to nap all day!"

Uh, no.

No, no, no. I don't GET TO nap. I HAVE TO nap. If I don't, I have no energy for anything else. Also, it's not a nap like you think. Fatigue (which is one of my primary symptoms) isn't being tired or sleepy or worn out. An article I read on the subject says it best: I rarely wake in the morning feeling rested - but more like I have run a marathon with a bout of heavy flu, particularly if my sleep has been disturbed. Fatigue is not another word for tiredness. It is a total shutting down of the mind and body - a barrier comes down past which you cannot move on. It puts everything I plan to do under threat. 

So when I say, "I didn't get much of a nap today," it's important. Not getting much of a nap affects my entire day. Sometimes more than one. Sometimes a week. It just depends.

After I got up, I fed my animals and started on a recipe for making Pan de los Muertos, or Bread of the Dead, in celebration of Dia de los Muertos today. It's a long recipe that takes hours, and really, really taxed what little energy I had left. Actually I was surprised at the energy I had today. Maybe going to the pool is starting to have a positive affect on my energy level. Anyway, I'm not able to knead dough like I used to and even though I used a big KitchenAid mixer to help, I still had to do some kneading by hand. I wore myself out and gave myself a headache, but I took some ibuprofen and carried on. The bread got baked and it tasted awesome, thanks for asking. In between letting the bread dough rise and baking it and making the glaze and tidying up the kitchen, I made this blog. An awesome friend made the gorgeous header.

It sounds like I did a lot today, but honestly, it's kind of a "make hay while the sun shines" thing. I have to get a lot done when I can because who knows when I'll be knocked on my ass next, or how long it will last when I am. And I will be. There's no doubt about that. To quote that cheesy movie Armageddon (I love, I know), "It's happened before. It will happen again. It's just a question of when."

Also, time management has never been so crucial in my life. I do the dishes while waiting for my tea to brew, and I try and do them every time a dish is used. It helps me keep things clean and done, because I honestly don't know from one day to the next if my hands are going to feel like cooperating that day. Today, as I said, was a hard day, not the least of which was because my hands aren't at their best today. They're shaky and weak and typing is hard and slow right now. (This blog post alone has taken me about four hours off and on.)

Another great article on the subject is this one about what it's like living with a hidden illness.

Outside, I look fine. Only a few people know I have this condition. As I said, it's not something I talk about. Not because I'm ashamed of having it, but because a) there's nothing to be done about it, b) I don't want pity or sympathy, c) I don't want people to see my condition and not me d) I don't want people to treat me like I'm a fragile little flower.

There's a saying by the great philosopher Denis Leary: "Life sucks, get a fuckin' helmet." That's pretty much how I cope with my issues. Yeah, MS sucks, but it's not going to stop me from living.

It's just going to dictate how I do it.

But I'm a defiant little bitch. For everything this condition throws at me, I'll find a way around it. I'll work through it. Get past it. Until I can't breathe. Yeah, that could happen. I could go to sleep tonight and not wake up in the morning because my MS decided to cut the wire from my brain to my lungs and I stop breathing. So what? It could happen to anyone, and I'm not going to let that fear run my life.

Fear is the mind-killer, people.

I should probably shut up now, as this is already an essay. I'll close by explaining the name of this blog, Stasis Interrupted.

It comes from the cheesy CGI movie ALIEN3. I love the ALIEN movies and it comes from the computer giving a warning about the cryogenic hypersleep stasis being interrupted by a fire. That's pretty much what happened to me. Here I was, going on about my life and business, when a fire interrupted my stasis.

Stasis can also mean "equilibrium" or "poise." MS is interrupting that, too.

So there you have it.

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I don't want any advice, "try this/have you tried," or any medical opinions. Anything else, feel free to comment!