Symptom Triggers and Changes

And so, throughout the day to remove the stress from work, I would take a walk. And then, I would come back. But within two or three hours, because of the yelling and screaming, I couldn't focus. So, I was noticing, also at home, that just the interference of the TV or the radio, it just-- at times, I would be up at night, just tossing and turning. I wouldn’t be able to go to sleep. And it was impacting my cognition. I just couldn't think right. And there were days when I would wake up, and I would be at work. But it's like, wow, I don't know how I got here. I mean, obviously, I know, but just the thinking was really hard. And I was just noticing that my muscles, they were just getting tight. 
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I know that, in terms of sleep, I need to have at least seven hours' sleep. Because if I don't, I will wake up the next morning, and I will be either fatigued, or I will sometimes have headaches that last the entire day. Where it's a very small headache, like here. But it's just the entire day, and it's very aggravating. 
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And so, I would feel my toes tingling, in the sense of the coldness, that they were so cold that they would be stiff. And so sometimes my fingertips, as well. So, I remember at work, one of the reasons why I would go out to walk, is to warm up. And it's not that the A/C was so cold in the office, it was because we were sitting. The only time that I wouldn't feel that, when I was doing conducting training in the morning or in the afternoon. But if I were sitting or doing virtual webinars or something, that's what I would feel in my hands and my toes. And then, also, if I don't get the sleep, I would just be tired with my thinking. I couldn't remember things. It was just fatigue and just tired, just being-- waking up, and I'm still tired and sleepy. And then the bladder. 

So yeah, the nerve pain is just very acute and unpredictable in its duration and sting. And that's less common. That's more when there's an exacerbation. So for this, it was some infection. Or if I've had a really long day, or if it's really hot, I'm more inclined to have nerve pain if I'm really tired. So I really moderate all of those things knowing what kicks it off. I'm really protective over my temperature, my activity level, and my stress level, and my sleep.

A year later, then I was feeling fine. And all of a sudden, I had an ocular migraine, which I never had before. And I couldn’t see for the better part of a half hour; I had like black holes in my vision. And then a year after that, I had a week of vertigo out of the blue-- in the shower. Like, things just started spinning and that lasted for about a week. And then this two years later, kind of in the same time period, April to May. Nothing happened last year. But then this year, my voice, as you can hear, and anyone listening can hear-- this happened because of some unknown infection I had at the beginning of the month, not COVID. And this tipped me over into a relapse. 

It's, you know for me, it was just an evolution of just slowly losing some abilities and then trying to compensate. You know they might come back. That is kind of the nature of a relapse. When I was initially diagnosed with relapsing remitting, which, I think, is their initial diagnosis for 85% of people with MS-- and the nature of that is you have this exacerbation of symptoms, and you might get full function back, you might not. And so essentially, that's what happened with a lot of them. I-- I'd lose function, and then I'd get most of it back. But there was a period of time in there where I wondered how much of it I was going to get back. Like the speech thing really worried me because I was-- because at the time, I didn't know it was a relapse. So, I didn't know if I was going to get better or not. But I also figured out, once I knew it was a relapse, that, boy, of all the things that could go wrong, that's one of the hardest things to deal with, which is not one that I would have picked out of the bunch initially. Right, you always hear, “yeah, he's going to be in a wheelchair. When can he walk again”, that kind of stuff. I mean losing your ability to communicate with people-- that's a tough one right. So, I was more worried about that. 

INTERVIEWER: What were those seven years like between when you decided, if I ignore it, it'll go away, and then when you had another relapse? What was going on in that time?  

You know, I held it-- my funny little disease or my funny little things. I would lose vision in one eye. One time I could not straighten my leg. And that's what prompted me to go to the doctor eventually after seven years, is my leg would not straighten. I had horrible spasms, and I had the burning, the vibration down the neck and the MS hug. I gathered, when I went through my history, that I was probably averaging, like, two relapses a year.  

INTERVIEWER: And would you recover from those relapses, or would your symptoms--   
I recovered, yeah.  
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INTERVIEWER: And did you work after that?   

I kept trying to go back. I'd apply, I'd get an interview, I'd have a relapse. In 2015, I was just getting ready to go back, I had the relapse that defined everything and changed everything. And so that was my last attempt.   

INTERVIEWER: What do you mean by the relapse that defined everything? Can you talk about that?   

After that I had very little energy. The fatigue level and the cognitive process just-- it wasn't working. I couldn't fill paperwork out anymore. I'd just sit there and look at it. Things were too small. I'd had three relapses that were back-to-back-to-back. I'd lost my vision. I couldn't walk normally anymore, and I couldn't think. And I'd have all these spasms, and I couldn't sleep at night. So, I can remember specific periods in time where I had a relapse that my life had to start a different way. It was like I had to find a new way to work around different obstacles.   

Walking even one block, I can't do it. I used to do. I could walk. I used to walk. I could not walk one block as of today. I have to rethink even if I'm going on any jagged surface because I tend to fall sometimes on those. So, all of these things I used to do it, even five years back I was able to do it. Slowly and slowly and slowly and slowly, I'm seeing that I'm not able to do it anymore.

This is more a slow just gradually adapting, I guess, to things that I lose in terms of my ability to do stuff. It does kind of sneak up. So, I would think, a year ago, I was able to get a gallon of milk out of the fridge, kind of tuck it under my left arm in a weird way. But I could actually lurch from the fridge to the kitchen table, and even open that milk and pour a cup, stuff like that.  

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And then when those things become impossible, you think, wait, when was that? I used to be able to do that. And I don't know when the last time was really. But I can't do that anymore. So, there's a lot of stuff like that. Or a year ago I might think, yeah, I was driving around and in carpooling, and now I'm not.  But some of the stuff was just so gradual. I can't say, oh, well that was the last meal I ever cooked. I don't know when. But just you kind of make adjustments. Or the last trip that I was able to make to the grocery store myself. I have no idea. It was a long time ago. But there was not one moment where I said, “OK, this is it. I know the trips to the grocery store are over.” It was just gradual.