Progress Report

It's been a week since I started the new oral disease-modifying drug Tecfidera (formerly BG-12), and so far the side effects have been minimal.

To recap, with this drug you start out with a half dose twice a day for a week, then increase to the full dose. The first fill comes with a "starter dose" bottle labeled "days 1-7," then another bottle labeled "days 8-30."

I started the drug last Thursday, July 11, 2013, and increased to the full (what I call "the big girl") dose on Thursday, July 18.

Just so you know, they're serious when they say "take with food." This doesn't mean just a glass of milk and half a sandwich. This means a FULL STOMACH. Not just "something in it." I learned this one the hard way.

As for those minimal side effects I talked about, there have been some bouts of nausea, abdominal cramping, and other gastrointestinal things the package says the medication can cause. I've learned to keep these down to a dull roar if I eat enough both before and after taking the medication. There has been very minimal flushing (one of the main side effects of concern with this drug), and it's mostly just after taking it and just around my hairline. Basically, my neck feels hot and tingly. This isn't often, but it's noticeable when it happens.

I'm guessing this flushing thing is what's responsible for my "running hot," as I call it. I've always been cold, and now I'm not. I'm so warm now the cats even cuddle with me instead of my husband (he's the warm one, not me!). I'm so warm now that I have no trouble at all falling asleep. My body warms the covers over me so quick I don't have time to be cold. My feet and hands are warm now. I suppose it's actually kind of a benefit for me. Maybe we'll save a little on the winter heating bill this year.

There's also been a little bit of itching (not much) like the package says there might be, but it's not that often. It also says that the side effects of the medication lessen or disappear completely after 4-6 weeks on the drug, so we'll see where I sit then. I haven't even made it to a full week on the Big Girl dose, and so far everything is manageable as long as proper protocol is observed (like eating).

One thing I will note is my lack of fatigue. Oh, I still get tired easily and need to lie down on a somewhat regular schedule, but it's nothing like it was when I was on the Copaxone. I noticed an increase in my energy level soon after I stopped the injectable about 6 weeks before starting Tecfidera, and this new medication hasn't swayed it one way or the other.

I've only had one headache, and while I might just be going through a "good phase" (remission of my relapsing-remitting type of Multiple Sclerosis), I'm hoping it's because I stopped the Copaxone.

My anxiety has dramatically improved as well, with only a few bouts off and on, and not for very long. For those who have never had an anxiety attack, consider yourselves blessed. Words can't adequately describe it, but think back to a time when you were truly terrified by something, or consumed with worry over something (like a loved one in the ER after a bad accident), and multiply that by a hundred. Then add the fact that it doesn't stop. You know it's not reasonable, you know it's not rational. You know what it is. You even know why you're feeling the way you are, but it doesn't help. It doesn't stop. Nothing stops it. Nothing makes sense to it. You simply have to endure. To move through it. To get on with it.

To suffer through it.

Because even though it doesn't feel like it at the time, it does end. Eventually. Sometimes it goes away instantly. Other times it slows to a crawl then stops all together.

The complete bitch about this disease is that there's no control of any kind. None. Over your body or your mind. And there's absolutely nothing you can do about it.

But, there are things you can do to minimize things. Cognitive behavioral therapy is a good start. Yoga. Core training exercises. A healthy diet. A positive attitude. Physical therapy. Puzzles. Things to keep your mind and body sharp.

I'm kind of a hypocrite here, as I'm awful about eating. Most of the time it's just anorexia (loss of appetite, not the eating disorder). I have absolutely no interest in food or in eating. But this medication forces me to eat twice a day minimum or suffer the consequences.

Literally.

So there's that.

Speaking of, it's time now to go take my second dose for the day.

Until next time.

Moving Along

WARNING: BITCHERY AHEAD! This is a whiny post.

Just a bit slow.

Summer is the hardest time of the year for me. The heat alone is extremely bad for my condition, and while we've been pretty lucky here to remain somewhat temperate, we're looking at purchasing a newer home with air conditioning soon. Maybe next year.

Another thing that summer brings is summer activities. These are extremely hard for me, not only because of the heat, but because of the people and involvement. People go on vacations and so on, which means either they want me to play host or want me to visit, and I've come to the point in my condition where I'm able to do neither of those things.

Most people are fairly well aware of my condition by now and take it into consideration when inviting me to BBQs and other fun summer things, but that doesn't make it any less disheartening. Another thing about summer that's difficult for me is I have to keep the windows open for the air flow (to keep the house from heating up, which as we've already established is very bad for me), and that means I hear every car driving by, every screaming kid (and this neighborhood is full of screamers) out of school, every dog barking, every single noise out there. This is problematic for me because fatigue is a huge part of my condition and I absolutely have to lie down during the day just to function. It's extremely hard on me when I finally get to rest and am awakened by the piercing shriek of a neighbor kid or a barking dog.

Fourth of July was NOT a fun time for me. I've come to refer to the first week of July as "Hell Week," because everyone is setting off illegal fireworks in the days leading up to and following Independence Day. (And I mean illegal ones - as in the ones not allowed in this state that they go to the Reservation to get or across the state border to get and set off.) Someone's out there right now setting off something huge. It's pretty far away, though, so I can't tell if it's a big firework that they've saved from last week (LAST WEEK PEOPLE! KNOCK IT THE FUCK OFF ALREADY!), or if someone's out with a shotgun being a dipshit (it's dark out, so I really don't think they're shooting at targets). We have a lot of rural property out here, so a shotgun wouldn't be unlikely. As I've heard it three times over the last half hour, I'm betting on an M-80 or some other illegal firework. (ETA: Yeah, they're fireworks. *sigh*)

I hate stupid people.

I used to love the Fourth. Now it fills me with dread. It's loud, annoying, terrifies my animals, increases the already-doubled summer population, screws up traffic and idiots set off fireworks for days if not weeks afterward. (Last year I yelled at some neighborhood morons for scaring the hell out of my animals in AUGUST with their stupid fireworks!) But it's over now, and with it the first half of the year. I am all but living for fall, when the temperature drops and the kids go back to school and I can close my windows and everything turns inward again.

I was an introvert before my condition. I'm even more of one now. I'm all but a hermit now, and I like it that way.

As I said, we're considering a move next year, either to another part of the area or another part of the world entirely. We'll see. A lot of it will depend on finances and feasibility, but we definitely foresee a move in the not-too-distant future. I've already been looking at houses online.

On another note, today I started a new treatment. It's called Tecfidera (formerly BG-12). I've been waiting for it for over a year, as my former treatment was an injectable medication I didn't take so well to. Tecfidera is an oral medication that replaces the injection, and has been shown in studies to perform the same function of my injectable a whole lot better, and then some. My neurologist thought Tecfidera would be a good fit for me, and I've taken my first dose today.

I tolerated that first dose well. It's a starter dose that I'll take for a week, then increase to the full dosage. I'll blog any reactions or side effects of note here. I've had my preliminary baseline bloodwork (as this can mess with your white cell count, making you more prone to infections), and have an MRI scheduled for next week to see the current condition of my brain. So far I've only had two lesions of note that I'm aware of, and this medication is supposed keep the progression of my MS in check.

Here's hoping.

I've been reading a lot here and there about MS, and most of the things I've been reading are from people who are in wheelchairs. People who know me send me links and such when they come across them, and while there has been a lot of hopeful things written, most of what I'm seeing is from people whose conditions have deteriorated to the point at which they need a wheelchair.

Fortunately I'm not in this position at the moment. I use a cane and need some help walking sometimes (especially with stairs), and while I can't go very far or very fast, I'm not in a wheelchair yet. Everything I'm reading, though, pretty much says "I was in a wheelchair within 20 years of my diagnosis." Okay, fine, but! I was diagnosed early and, forgive my sexism here, am a woman. Most of those I've been seeing in wheelchairs are men, and men are notorious for not going to the doctor when something is wrong. It's an unfortunate fact that men don't get the treatment the need as early as women do, due to the illness not being caught as early as it is in women. (Sorry, guys...but it's true.)

And that's not to pick on men. MS is also notorious for being hard to diagnose. The early symptoms can all be explained away (I did it, too! The only reason I got diagnosed as early as I did was because the last doctor I had to be prodded into seeing knew the symptoms I was describing as he was familiar with the disease. Before that doctor, one referred me to a psychiatrist for "stress" and basically told me it was all in my head [he was right, after a fashion, I suppose] and another sent me to a sleep clinic where I was diagnosed "narcoleptic." Um...no....) in various ways, and men aren't very vocal about their various issues. It usually isn't until their MS is in the later stages and is more recognizable/troublesome that they finally go to the doctor.

I was lucky in so many ways, and I'm aware of that. But lucky or not, the reality is that, unless a cure or serious treatment is found for this illness, a wheelchair is in my future.

But today is not that day.

Now it's time for my second dose of my new medication. I'll let you all know how that goes.

Still Here

And still alive.

No, nothing bad happened to me or my family or anything. I've just been busy with life and things more important than blogging about my unfortunate condition have taken my time.

See, that's the thing about this illness. I have to pick and choose what I spend my energy doing, and there are a lot of times when I have to prioritize. Blogging isn't very high on the priority list when I've got to choose things.

As I said, I've been busy. Nothing specific, and nothing vastly life-altering. Just...you know...life.

Sometimes, it's all I can do to cope with that. Sometimes something as simple as washing the dishes or folding a load of laundry does me in for the rest of the day.

In the time it's been since I last blogged, there have been some 8 days, 9 days, 1 days and 5 days. That's the thing about MS - you never know what kind of day it's going to be. You might wake up feeling like complete shit with a migraine and vertigo, but two hours later you feel ready to gear up with the Avengers.

The reverse is also true. You wake up, bright-eyed and bushy-tailed, and just after you shower and dress you're hit with fatigue like a freight train and have to lay down or fall down. There's no consistency with MS. No certainty.

Except one.

And that certainty is - it's going to get worse.

That certainty frightens some into complete shut down.

I'm not saying that's not frightening, and I'm not saying I'm not afraid. I am.

I just don't let that fear stop me from doing what I want. You can't stop. If you stop, you die. So move. And keep moving.

Other people are moving. Google "MS Walk" and you'll see just how many are moving. All over the world, people are moving, and those who can't move are being moved by others.

Things are happening. Things are changing. They WILL find a cure. They will.

We just have to hang on until they do.

Soon now.

I'll try to get back to blogging regularly, but like I said, MS is a disease of uncertainty, so no promises on that.

As for today, I'm going to call it a 3. I've been good on taking my vitamins (I was off for several weeks there in Feb/March) and am trying to eat better. It's hard sometimes to eat properly when you have so little energy, because not only does convenience replace nutrition, neglect often replaces it as well. Sometimes I just don't have the energy to go make myself something to eat, and other times I know I should eat but don't have the appetite to bother. My family is amazing and looks out for me, but they can't do anything about how little I eat when food is made. I feel bad sometimes when a meal is made and all I manage is a few bites before I just can't eat anymore because I'm either not interested in food or am just literally to tired to eat.

I was reading something today about pregnancy (which I'm not and that's officially no longer possible, thank you) and realized that the symptoms of early pregnancy (like the first four weeks) are very similar to living with something like a junior version of MS. There's constant fatigue, anxiety, mood swings, nausea, headaches, backaches, sensitivity to light and smells...it was uncanny reading it.

So to those women who have been pregnant, remember that time. That's what it's kind of like to live with MS, only times 100.

Ironically, it's said that pregnancy is one of the times a MS patient feels their best. I wouldn't know - as I said, I'm officially out of the gene pool. I was diagnosed young and that only added to my decision (among many other private issues) not to have children.

The last time the flu ran through our household and my husband was spending his fifth day in bed with fatigue and headache, he turned to me and said, "Honey, if this is anything like what you feel every day, I'm sorry."

I smiled and said, "Thank you. And yeah, that's kind of what it's like, only imagine having to get up and go about your day as normal feeling like you do."

He said, "I don't know how you do it. You're the strongest person I know."

I said, "Thanks, baby. Put this under your tongue." (He was running a temp of 103....)

Gladiator

I'm not one for denial. I like reality. I like facts. I like facing them and I generally don't delude myself when it comes to things. I'm a pragmatist. A realist. Some people might mistake this for pessimism, but there's a difference. A pessimist says, "why bother, there's no point, it's inevitable, just give up, there's no hope, it's over, might as well call it here," and so on.

An optimist is pretty much the opposite and keeps a sunny disposition and happy outlook no matter what the circumstances. I wouldn't dare call myself an optimist (because optimism tends to border on denial - "la la la everything is fine!"), but I tend to be optimistic about my condition. There's research and treatments and ongoing progress in finding a cure for me, so there's hope.

But even if there weren't any, I'd still fight. I would still face each new challenge presented to me to the best of my ability, because I don't know how to do anything else. I'm a fighter. It's an unusual trait in a female such as myself. Women tend not to like conflict and prefer it when everyone gets along. We're mothers and nurturers. We like it when everyone plays nicely. When we're at the playground and someone comes along and is a jerk and a bully to us, we tend to gather our little chicks under our wing and take them away somewhere safe where the jerk won't bother us. We find another park and leave the asshole to play by himself.

Unless you're me. I'm one of those women who will go right up to the jerk, tell them they have three seconds to play nicely with the others or I will punch them in the face. We were here first and everyone was having a good time until they showed up with their asshole attitude, so they can just leave.

That's who I am. That's what I do. I face things. I confront them. I look them in the eye and size them up. Yeah, sometimes they're a lot bigger than me, but everything has a weakness. Everything has a way around, under, through or across.

Every time this illness does something to me, my world is reordered. Sometimes, that's daily. Sometimes more than once in a single day. Sometimes it's quiet for hours, or days, or weeks. Some mornings I wake up feeling great and energized and ready to do ALL THE THINGS, only to be hit with massive fatigue an hour later while trying to vacuum the living room.

It can be frustrating, coping with so much change. I'll be the first to admit that sometimes I just want to sit down and sob because I can't handle it anymore (and I've done this). It doesn't help anything, but it does make me feel better, sometimes. Then I come back to my senses and kick myself for letting my condition get to me, get off my ass, dust off my butt and get back into the arena for the next round, because this fucker's not going to give up just because it knocked me on my ass.

I realize this is bigger than me, but all I can do is keep fighting. Why? Because I'm not about to lay down and die.

Do I get disheartened? Sure. Absolutely. And I allow myself that. But you know, the Litany Against Fear from Frank Herbert's Dune works for a lot of things, and really losing hope is pretty much just a form of fear. It's the fear that you're not strong enough. That you're too little to face this big thing. That you're alone. That you might not be able to come back from wherever you've been knocked. That you can't get up again.

But you can. If you can breathe and you can move, you've got more than a lot of other people do, so get off your ass and get back in there.

There is a codicil here, though, and that's honesty.

You need to be HONEST, with yourself and others. Being a fighter/warrior/gladiator isn't about being Leeroy Jenkins. But there's honesty and there's Honesty. If you genuinely, honestly, can't get out of bed that day, then you can't. Stay in it, eat cookies, cope with the fact that you're having a bad day.

If you don't want to get out of bed that day but are capable of doing so, don't lie to yourself and say that you're having a bad day and can't get out of bed.

There's a vast, vast difference between "can't" and "won't," and you need to be honest with yourself about which it is.

If you can't do something, fine. Okay. But be sure it's a "can't" and not a "won't."

So many people with chronic illness lie to themselves. But they don't think of it like that. They think they're being honest with themselves by admitting that they can't do something. It's a very seductive lie, too, because that can't is much easier to accept than won't.

If you can't do something, you're blameless. If you won't do something, well...you're just being a dick.

Don't be a dick, to yourself or anyone else. You don't like it when people are dicks to you, so why are you a dick to yourself? Stop it.

Be honest with yourself. At the same time, don't think you're a wimp when you lose the fight. No one wins them all. Sometimes you lose over and over and over again and you wonder why you keep fighting.

I'll tell you why.

You keep fighting because the only other choice is sitting on your ass. And if you're okay with that, fine, go do that.

Just be honest with yourself and accept that YOU made that choice.

Yeah, it sucks as a choice, okay? It does. I get that. But as I said above, I'm a pragmatist, and when given the choice between two equally crappy options, I'm going to take the one I can best live with.

And I couldn't live with myself if I sat back and just let this thing take over.

Because that's really what it comes down to. You choose how you cope. I realize there are people out there who don't have any coping skills to speak of and it really sucks to be them, but they can learn to cope if they're willing to put the work in to learn them.

But that involves work - work sucks and is hard and no one likes to do it, because it's work - and it involves more of that honesty stuff.

Yesterday I had another fall. Yesterday was a pretty bad day for balance and coordination for me. I kept nearly falling over, spilled things, knocked things over, and so on. My fall wasn't that bad - my left hip cramped up on me when I tried to get out of bed and I ended up falling because I couldn't get my balance fast enough. This happens and I wasn't seriously hurt. I jammed my right pinkie against the doorjamb and took a good chunk of skin out of it, but it's not broken. My left shoulder, arm and butt-cheek are sore where I caught myself, but nothing's broken. Just some bumps and bruises. Nothing ibuprofen can't ease. And now it's documented, so yay for that.

I've been sucking on my vitamins. I think I've managed one full day of them since refilling my vitamin case, but I'm attempting to do better.

I had a migraine the other day and ended up taking a pain pill for it (I have some hydrocodone I carefully hoard and use very sparingly - I'm averaging about one tablet every month, which I still think is too much, but it just goes to show that I'm in a lot more pain than I realize - I should probably be a little more honest with myself about that.*cough*hypocrite*cough*).

My anxiety has been bad lately, but I'm fighting it. It's getting better.

Saturday (1/19) I went to bed at 7:30PM and slept all night.

Monday I went to bed about 1:00AM and got up at 5:00AM. Yay, insomnia! Sleep problems are common with MS. Annoying, but common.

Being honest with yourself isn't easy. Denial is so tempting. I don't like to admit or accept that I'm in pain. That I'm in decline. That I'm losing pieces of myself and my abilities every day, because that's what this disease (I really hate that word) does. It takes away pieces of you slowly (at least my version does - other versions are faster, stronger, etc. so I'm lucky in a sense).

Just when you think you're used to the way your world is ordered, things change. Human beings are resistant to change, but it's those who can adapt that survive.

Sometimes it's fun. Sometimes it's like a game. Like, "oh, today we're going to go through the whole day COMPLETELY DIZZY! WHOOO HOO! Let's see how we do! YAY VERTIGO!"

Other days it's, "Oh, huh. I can't feel my hands. Well, this will be interesting, won't it?" Or "My eyes are working today. Guess I won't be reading much." Or "Whoa. Light sensitive today (photophobia)! No lights or computers for me today!"

Even the simplest tasks can be a challenge sometimes. Like taking a shower. Ever had a really, really bad case of the flu and the simple task of taking a shower was just too much effort? It was all you could do just to get in, get out, change your undies and crawl back into bed?

Yeah. MS is a lot like that, only it's EVERY. DAMNED. DAY.

You learn to cope. To fight. To deal.

This blog post got way longer than I intended, but hey. Make hay while the sun shines and all that. Right now I'm going to go get something to eat and go nap, because it's that time.

Right after I take my vitamins.

Slowly Recovering

I'm getting there, I'm getting there!

I ordered new vitamins last week and they arrived today. I've decided not to renew my pool pass this quarter. Not only do I not want to shell out that kind of money right now, I've started a new fitness regime that benefits both me and my dog. He's got some health issues too, and has been ordered by his doctor to walk twice a day to help it, so out we go. The last two days the weather has NOT been permitting, so we've just sat around, but we'll get back to it tomorrow morning, rain or shine. (Here it's usually rain, which I can cope with. It's the 50MPH winds that are difficult.)

So tomorrow's plans include getting back to the fitness regime and taking my vitamins again. This will wear me out (the vitamins) for a couple days at least while my body adjusts itself once more to the nutrition influx, but that can't be helped. Maybe I'll finally get some sleep.

Sleep issues are a common MS symptom. The past week or so I've really been suffering insomnia (it's almost 4AM right now) as well as anorexia. Upside - I'm down to 152. Downside - it's not healthy weight loss. I'm just not hungry. Just not. It's involuntary starvation is what it is. It's got nothing to do with depression (which I fortunately suffer rarely) that I'm aware of, but maybe it does. My emotions are all over the place lately, but I blame that on lack of sleep. I'm starting to normalize, but it's slow.

I will eat if there's food in front of me, and I'll make myself eat something because I know I'm supposed to, but I'm absolutely not interested in food. My stomach growls sometimes, so I know my body is hungry, but I don't feel it. I don't feel weak from lack of food (I mean, come on, there's TONS of stored energy just waiting to be used there, body, so grab some of that belly fat. Take some from my thighs and butt, too. There's enough there to last for like a year or something. I promise you, you won't starve.), but know I need to eat.

The insomnia is the real bitch. I'm averaging about 4 hours of sleep a day. A day, mind you. That's 20 hours up, 4 hours down. Read that way, it doesn't seem like much, but to me, who is accustomed to 4 hours up, 6 hours down, it's a hell of a swing. Strangely, I'm okay with this too. It's been fantastic for my productivity. I know it won't last, so I make hay while the sun shines, so to speak, or try to anyway.

Speaking of my emotions being all over the place, I am profoundly sad at the moment (just the moment, mind - I don't let things bother me for long). I've recently found out someone I really like has...I don't know how to say this delicately, so I won't be delicate. They found Jesus. They've become one of those "YAY GOD! GOD IS LOVE! GOD RULES! GOD IS IN MY LIFE AND I'M DEDICATING MY LIFE TO HIM YAY GOD! GOD IS LIFE AND ANYTHING NOT GOD ISN'T FOR ME!" people. Now I don't mind if you're religious or faithful or spiritual or whatever you want to call it. I know that faith is a big part of some people's lives (I have my own, and it's personal, and I don't inflict it on my friends and family. If theirs differs from mine, I don't care or take it upon myself to tell them they're wrong, even I believe they may be [which I don't, but that's beside the point]. You get the idea.), but I don't believe in shunning people who once shared your life because they no longer fit in with your idea of what's "right." I know AA does this to people, and rightly so - associating with people from your old (damaging) life can set back your own recovery/addiction, so I understand the theory behind what these people do, but that doesn't make it hurt any less. Someday this person may want to renew ties with those they've left behind, and I hope if that happens those people will allow them in their life again. I'm not certain I will. I'm not big on second chances, because I'm of the opinion that if you sacrificed me once to whatever ideal caught your attention at the time, you'll do it again the next time, and my friendship is not a commodity. It's not expendable or negotiable, and though I am pleased this person found something that makes them happy and gives their life meaning and hope and fills whatever emptiness they had inside them, I'm not going to be put in the position to allow it to happen again. This is something I'd never have expected of this person, and I'm trying to be happy that they're happy, but I'm more angry than anything. I'm also angry at what this means for them. It means they're giving up more than their friends. It means they're turning their back on things they once thought and believed. Or maybe they were always a mean-spirited, bigoted homophobe and have just now found something that will allow them to be a fucktard and hide it behind religion. I don't know. But this blog isn't about that kind of thing. It's about me and how I cope, and I don't need this person in my life to do that.

But I kind of wanted them there.

There are a couple other people I've wanted in my life as this disease progresses, but they're not around for one reason or another. One has passed on, one is afraid of this illness (they won't say it outright, but I understand, and I'm all right with it), one is afraid of what I mean to them so they hide behind obligation so they don't have to offer their support, and yet another has likely been forbidden to associate with me by their spouse because I'm of the opposite gender. I can understand all these. I think they're stupid reasons (except the death one - that one is kind of...uh...not their fault) for not being there for someone you care about, but they're all justifiable and understandable.

I still don't have to like them.

There are times when I feel terribly alone in this fight, but I know I'm not. Rationally I know that. MS isn't a rational illness, and often rationality is the first thing to go when anxiety and such kicks in. I am very, very grateful for my wonderful supportive friends who would never dream of pulling the shit described above. I'm grateful for my family who is there for me and does what they can to understand and adjust to what happens to me. I know this illness is hard on people, and I try to make it easier on them by doing for myself and not complaining when things get hard. I'm not perfect - I never claimed to be, but my family and friends know when I bitch, it's legit and not just the fact that I don't want to cope with my life.

I have every excuse in the world to just sit back and let life pass me by. No one would fault me for it. I'm sick. I'm ill. I have a disease. I'm disabled. However you want to justify it, I could do it, and no one would say anything. They'd pity me and pat me on the head and bring me chocolate and roses.

FUCK THAT. I don't want pity. I will punch people in the face if they look at me, click their tongues and shake their head and say, "Such a shame." When I die (and that's an inevitable side effect of being mortal), I want my epitaph to be, "She was strong." I value strength, and the irony of this fucking bitch of a disease is that it's going to take away everything I value. My strength, my independence, my memories.

But today is not that day. Someday it will happen unless we stop it. There have been great strides in finding the cure for this disorder, but we're not there yet. Someday, hopefully within the next couple years, we'll find the cure. Because I got news for you, people. The clock is ticking, for me and others in my condition. Over half of people with my kind of MS (RRMS) develop a different kind (SPMS) within 10 years of diagnosis, and that's coming up for me. What SPMS means is that there's no relief period. Instead of slipping a little and finding a ledge to hold you for a bit, you simply fall. I'm on the ledge right now, and I've been living with this for going on eight years this year. When BG 12 (linked above) is approved, if I'm fortunate enough to be approved to be on it, it should slow the progression and give me a little more time with what passes for normal for me, but that's all it is. It isn't a cure. It's a stopgap. It's shoring up the ledge with a couple 2X4s so it doesn't crumble beneath me.

I don't know if anyone outside those I've given the link to read this blog, but if they do and you want to contribute to help the cause, my friend is currently seeking sponsors for the MS Walk in May. She's Canadian, so it's goes to the Canadian MS Society, but Americans and other countries can still donate. The donations will go to fund research on MS, and no matter which country kills this thing, we all benefit. So if you can afford a couple dollars, please consider supporting her. You have until May to donate, so if you can't do it this month, think about it between now and then. We'd both really appreciate it.

A lot of people would appreciate it.

Normalizing

There wasn't much of a nap for me today.

Holiday insanity, though grinding to a slow halt, is still present and interrupting what passes for my schedule of late.

My meds are all off, I'm out of several of my vitamins (I'll order them after the New Year and the household coffers are replenished), I've been skipping my shots out of sheer forgetfulness or defiance with the excuse that I don't have time for them (dude, they take less than a minute, come on!) that morning, etc.

I've been telling myself that, starting Monday, I'll get back to taking everything like I should.

Yeah, right. It's probably going to be more like Monday the 7th, but we'll see. I'll think about that later. Right now it's late and I need to sleep, but I wanted to get a couple things down first.

Today (and part of yesterday, really, if I think about it) I had a little bit of a headache. It eased off, but now that it's almost bedtime and I'm worn out, it's trying to come back. I've eaten horribly when I bother to eat (anorexia is back as of a couple days ago), and I don't even want to know how much weight I've put on. My jeans are still fitting decently, but we'll see. I'm not going to bother stepping on the scale until Monday.

The pool has been all off. I think I've gone once in the last two weeks, and ruined that with pancakes afterward.

There was a lot of clumsiness and wobbling today, but I still managed to get some chores done. Which is why I didn't get much nap.

Anyway, there. Documentation complete. Now I'm going to take an ibuprofen, pray this doesn't turn into a migraine (I don't think it will, because it feels more like a stress/fatigue headache), and go to bed.

I'm calling today a 5.

Catching Up Is Hard To Do

Okay, so I stole the title of the post from an old song. I'm not exactly creative at the moment.

Anyway, it's been almost a month since I last blogged, and that's not because I haven't been meaning to. Time is a valuable commodity when you have a condition like mine, and as loathe as I am to admit it, blogging just isn't high on my priority list when I have to choose what to spend the little energy/coherence I have on something.

MS affects everyone differently, and I've talked a little before about my primary symptoms. Most prevalent is fatigue (oh, God, is there fatigue!), but there are a few other things that really make my life interesting at times. Those include:

Anxiety (this is a biggie)
Decreased cognitive function (which is a nice way of saying "I can't brain today, I have the dumb"), including memory loss
Clumsiness/decreased dexterity i.e. falling/stumbling
Numbness - usually in the extremities but other times elsewhere

Now, about that memory thing. I have a hard time recalling most things. I can watch a TV series, know I've seen it, but every episode is new to me because I can't remember I've seen it. You get it. Given that, I'll write down what I do remember about this week.

Monday (12/17) - I don't remember much except that I remember I didn't go to the pool for some reason.

Tuesday (12/18)  - I went to dinner with a friend. (For the record, I didn't eat anything I hadn't eaten there before, several times over.) It was very nice and I went to the pharmacy afterward to pick up a prescription and something that had never happened to me before happened. (Sensitive viewers please skip this paragraph, as it contains FAR TOO MUCH INFORMATION, but needs to be documented so I can tell my neurologist about it, as it's a new thing/symptom, and I'll need to watch for recurrence.) After I picked up the script, I was doing a little shopping and felt my stomach rumble. I ignored it as I'd just eaten a nice dinner out and was digesting. Then it rumbled a little lower and all of the sudden  I needed the bathroom, IMMEDIATELY, or I was going to have an accident. I looked around for one in the drug store and couldn't find one, but I knew there was one at the sandwich chain two doors down. Honestly, I wasn't sure I would make it. I knew there was no way I could make it home - I'd have an accident for certain. I abandoned my shopping card and literally hobbled, lower cheeks clenched tight against anything wanting to move, to the sandwich chain. I barely made it, but I made it. I have NEVER come that close to a bowel accident anywhere, in public or otherwise. Bladder accidents, sure, I've come close. Never have I worried or even experienced a bowel incident like this.

I know bowel and bladder control problems are common with MS, but I've never had to deal with my bowels before. Bladder, yes. I've had a few close calls and even an incident or two that's taught me to carry extra bladder control pads in my purse, but nothing like this. Anyway, that's documented. Moving on!

Wednesday (12/19) -  I went to the pool, then ruined my almost full hour of exercise by going out for pancakes afterward. This is important to note because I slipped and fell in the entryway of the restaurant. My cane went flying and I just went down. It was a slip of my pool shoes (this was really the issue here) on the wet floor beside the rugs put down to catch the water (it rains a lot here). I stepped off the rug to make room for my friend behind me, my shoe slipped in some water there and down I went. No injuries, though, beyond a bruised and scraped knee. Everything else was okay. A nice stranger offered her hand to help me up, but I waved her off and got up on my own. I found my cane and went and had breakfast. Before we ordered I went to the bathroom and checked myself out. I washed the knee and hands and cane and went back to my table. I carry a small first aid kit in my purse (look, you learn to do this after awhile with this condition, and should have one anyway whether or not you have MS) and hand sanitizer (alcohol 60%). I sanitized the scraped knee, took an ibuprofen (which I also carry) and put a bandage over it. Then I sanitized my hands and went on with my breakfast.

Yeah, the knee hurt. It still does. I banged it good. But nothing else was hurt or damaged, and I'm okay with that. The restaurant staff was concerned also, but I waved them off and told them I was fine. I spoke to my husband and assured him I was all right and didn't need the hospital. (The first fall I had before I was officially diagnosed I unknowingly broke my tibia and fibula. I didn't go to the hospital and ended up mentioning to my family doctor that it still hurt 10 months after the fact. He took an x-ray and told me it was an old, healed fracture. So I break my leg and walk around on it for 10 months. Go me. Hello, high tolerance for pain! So we're a little more careful now.) I'm fine. It was my patella/kneecap proper that got banged, not anywhere else hurt or scraped. Just a bruise is all. I'll heal. It could have been a lot worse. Side note: I really need to both cut and paint my toenails. I was wearing pool shoes and my toes aren't all that attractive. Imagine if I'd hurt my foot! Then people would have been looking at my ugly toes with nails in need of clipping. (I may have my priorities out of order.) Moving on!

Thursday (12/20) - Here's the part where it gets interesting. All this week I've had anxiety issues, and Thursday was hard. I took the day completely off. I stayed in bed until 1PM, then got up and spent the rest of the day watching movies on the couch, surrounded by my pets with my husband close by. It was a very anxious day and I needed my family close. I had a hard time moving - my limbs were clumsy and heavy - and just stayed down as much as I could. My husband is always attentive and understanding when I have "a hard day," and he kept me well-stocked with things to eat and the DVD player going. He's an awesome guy, my husband. I noticed as I was getting ready for bed that my neck and chest were numb/less sensitive than they usually were, but I shrugged and just chalked it up to another symptom in this bad patch. I went to bed about midnight (remember I'd slept until 1PM and hadn't laid back down for a nap, so I'd been up about 12 hours - a feat for me) and slept until this morning.

Friday (12/21) - THE APOCALYPSE HAS...wait, no it hasn't. Huh. The world didn't end, and the sun rose in the East and everything, and I was feeling okay. Mostly. I mean, I could get out of bed, which is more than a lot of people, so I did that. I fed my animals and got the day started as normal in our house. I was still very lethargic and didn't get to the errands I meant to get to all this week.

I went out to dinner again tonight, by myself. On purpose. I just needed to get out of the house, but my anxiety nearly stopped me. I stood in front of the door for five minutes, coat and hat on, keys in hand, ready to go, but anxiety reared its ugly head, saying things like, "Don't go! What if the house burns down while you're out? And you're not here to save the animals? What if someone breaks in because they see no cars in the drive? What if-"

Anxiety tries hard to make me its' bitch sometimes, and I take exception to that. Sometimes I don't want to take the little white pill my doctor gives me for those times to make it go away. Sometimes I just want to live my life and to hell with what that bullshit does to me. So I ignored it, grabbed my purse and left. Fuck it!

And you know what? It was fine. I had a nice dinner, a glass of wine, a nice dessert, some tea with it, and the house didn't burn down. I didn't get a flat tire. No one broke in. Everything was just fine. For the first time all week, I felt like everything was okay.

As I said, this week has been hard. Anxiety issues (I think the upcoming holiday is partly to blame; I may be stressing slightly), hard days, etc. I have a lot to catch up on, and catching up when you have MS is hard. The trick is not to get behind in the first place, but the smallest thing can set off a chain reaction that wrecks everything you've spent time arranging. The limited energy I have becomes even more of a valuable commodity, so things get shoved back and pushed aside to make room for the things I am able to accomplish.

Fortunately my family and friends are understanding (for the most part - there are a few people who are intimidated by my condition and aren't sure how to treat me, but they're learning) about things, so if I'm a little (or a lot) late for things, they understand.

Like my holiday fudge. I planned on making some on Wednesday, but things got a little out of hand and I ended up taking it easy. The fall didn't hurt me physically all that much, but mentally and emotionally it shook me up. Blunt reminders of my condition don't sit well with me. They make me angry more often than not, because I try so hard to live as normal a life as possible. I already do so much to compensate for this disease that when I'm, quite literally, knocked on my ass, I tend to resent it.

But what else is there to do about it? I can't sit down and cry and lament "why me?" because it's not going away. I can either cope or give up, and I'm not the kind to give up because I've had a little setback.

The "little setbacks" are going to become more frequent and more difficult, and that's just a fact. (Unless they cure this shit, which they might.) I might as well get used to it.

And gather my ingredients to make fudge tomorrow.