Friday, April 19, 2013

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.

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 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....)

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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!