Mental Health and Emotional Experiences

I contacted my neurologist. I said, “You know, I'm having trouble sleeping.” And sure enough, she prescribed some medicine for that. She thought that by getting back my sleep, probably fatigue would start easing.  And I tried it, and it didn't work at all. And that's when-- it's supposed to be working. Took a few days for me to recognize that. When it didn't happen, I contacted her, and I told her about what I was going through. And she just told me, “Alejandro, what you're going through, actually, it's depression.” Basically, I described it well enough when I said it that she said, “Just don't believe—” I mean, I told her some things and she said, “Don't believe what your mind is telling you, the storyline. You're depressed. We'll do something.”  And so, I went in. And I tried all that, but we didn't catch it. It's not that it was something that you could say, “Oh, this is it, magic.” So, it became something more profound. And it took several weeks for me to actually be able to recognize what it was and learn what it was, and perhaps just recognizing what it was. And something very important for me, to separate it from the MS. And once I did that, things started turning. Because for a while I was just thinking this is all-- I don't know what's happening, but it's not me, so therefore it's MS, because that's the only real thing in my life. But it turns out that, no, it was textbook depression. And at that point I didn't care where it came from, because it was important that I knew that you can treat it. That, you can do something about. And with that realization, which was maybe 18 months ago, I was just back. I was back.  So now I know more about depression. Now I know about MS. I know about severe anxiety. I realize what it can do to you. And I realize when it's doing it to me. And I can do something about it.

INTERVIEWER: With your MS now, can you talk about how it's impacted your daily life?  
My daily life is completely impacted by MS. There are days where I feel good. And I'm doing things around the house. I'm always doing things around the house, because I could never get anything done. I could never say to myself, I want to do this project, start and stop it. It's the most frustrating thing to me, just that alone, just not being able to-- and not failure to launch. Failure to end, failure to succeed. I just can't get all the way there. I don't know why. But that's been a problem. And it's not getting better. And I used to think it was just like, oh, I was lazy or procrastinating. And I'd actually get an actual anxiety attack about it, about finishing the projects that I can't finish. And I don't have a home health aide. And I really wish I had one, because I'll forget to order my medicine and take my medicine.  

Really, the only thing I can think of is diving deeper in the mental state of mind during these various phases that I feel like I went to, like the beginning versus when I got off Tysabri© and onto Lemtrada©, and where-- the point where I think I was at my lowest versus where I am now, where I'm not really-- I wouldn't say optimistic about the future, because I'm not really thinking about the future, but optimistic about my present in that if I do everything that I want to do today, then when I get to the future I won't have regrets about the past. We may have been able to talk a little bit more about just the mental state and the thought process and what I was thinking. But I do-- maybe we did talk about that. I don't-- I don't know. Because I do-- I definitely think it's interesting how what I was doing in life affected my mentality at different points in my MS journey, because it went from worried about the future to just didn't care about anything in that real low point, and then up out of that by changing my-- completely changing everything about my life and figuring out what it takes to be happy and how to be happy with MS and how to do what I want to do, to now making sure that every day I do the most I can do to live my best life.

Well, I think what hurt the most, when I was not getting the help, is that I didn't know how to ask for it. So, it was like, I know. I know I need help. So, it's not any more about whether people know that I'm sick or not or that I'm going through this. At that time, I didn't know about mental health. All I knew was that I had MS, and it was making me feel horrible with life. But people will tell me I was depressed. But I didn't know what depression was. But I knew that I had my neurologist, and that's the only person I have. And I had all these questions, and I knew I needed help.

INTERVIEWER: When you were first diagnosed, were you put in contact with any kind of psychologist, or psychiatrist, or mental health counselor?

No, and I think everyone should be. Actually, for me, there was a clinical trial in the [INSTITUTION] for newly diagnosed MS patients, and it was actually to do counseling to help us deal with the unknowing of MS. And I attribute so much of my "able to process all this" to that study.  

INTERVIEWER: Have you ever seen a therapist or a psychiatrist to help with this process?  
Uh-uh. I remember reading a book in 2003, and it was “What to expect the first year of your diagnosis with MS”-- something like that. And it said, do not seek therapy. And I thought that was weird. I'll need to go back and reread that book. And I thought it was weird, so I didn't. I thought maybe I was just too weak. I thought I was weak and didn't know how to process all of this. And now I wish I would have, because I wasted years being depressed, not wanting to do anything, just crying.  

But we seem to cope well. A lot of crying, a lot of laughing. We gotta laugh at everything, [NAME], because crying ain't going to help. So that's what we try to do. I joke with her all the time. She hasn't lost her sense of humor. That hasn't-- the disease hasn't hurt that yet. She still has that part of her personality.    

I go through periods of my life when I meditate more frequently and periods when I meditate less frequently, but I feel like meditation is wonderful and helps kind of, I don't know, quell the internal brain thoughts when my mind is going a mile a minute and I can't stop thinking about MS things. The meditation can be really nice from the emotional standpoint to just help me clear my thoughts. That's about it.    

Right at the onset when I realized what it was and all the pieces start to put together, I thought, oh, that's why I never got faster with my running. Because I was always so frustrated like, everyone else around me gets faster. And here I am just plugging along. And I was so hard on myself about that in particular because the speed work, hill work, trail runs, can't get faster, can't get faster. And I thought, well, gosh, I would have been more gentle on myself. What a miracle that I did three marathons, tons of half marathons, and one slightly ultra. And here I am beating myself up. Had I known I was doing all that with MS and lesions in my spine, I would have just been so much nicer to me. But I have learned to give myself a lot more grace. I no longer at all have that pressure with my running. Every step is a gift. And I mean it to my core and to my soul. And I run for joy. It's given me a lot of freedom to experience things for what they are and not what a goal attached to it is. I've learned, as I mentioned, to live in the present, although I've kind of gotten stuck there. So, I'm trying to transition out of only in the present.  
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And so, again, the uncertainty, how long is this going to last? How long can I speak at a time? When am I going to feel better? Because I'm feeling so worn out. So, the experience of this disease is to-- you have to be adaptable to change. And if you're married to static thoughts, you have to get rid of that, you have to recalibrate constantly, and you have to know that permanence is not where you should sit in life, really. But this diagnosis certainly teaches you that. And right now, I'm in a state of uncertainty, just like in the very beginning four years ago. Because right now, I don't-- I don’t know with certainty what's happening. I don't know if I have new disease activity. I don't know if this truly is a pseudo-relapse or a real relapse. But what I do know is this is real. And you just have to roll with it. So, the experience of this disease, again, going back to the original question is dynamic. I don't sugarcoat things. I also don't have toxic positivity about things. But I just sit with things. And sitting with these current symptoms and with this disease, it's-- you just have to live in the present. And so, I've definitely lived in the present the last four years more than any other time in my life, because I don't know how else to be. And only recently, I've started to realize I need to shift out of it and start planning for the future or planning trips. Although this makes me nervous again because I have an upcoming travel plan. And I'm like, this is exactly why I didn't used to plan because I never know what could happen. That being said, I'm just going to go with it. And you can't stop living.  

That's how you adapt to something like MS. You just withdraw from social events. But then it was too much. And that separation really was not good. And that fear of going outside the house, fear of falling, fear of people seeing you weak, that became a very heavy burden to carry, which led to severe depression. Coming back from that, after I got treated, I did go back to doing the things that I like to. OK? And part of it was come back, but also part of it was, I can still do it. So instead of shutting myself down and saying, you know what? I’m not bothering, I was saying, I can actually walk to that place and have lunch, or I can actually jump in the car. I don't know about tomorrow, but I can do it today. So, if I can do it today, and I want to do it today, what am I waiting for? Right? And then it became just a thing, not even thinking about it, just doing it. Right? So doing that, changing the way I was thinking, did wonders. And now I feel engaged.

I try to remain calm, and not react to it as fast as I used to. I used to try to do everything myself. So that's another thing. I try to just relax, and when someone says that they're going to do this, and do this, I learned how to say, OK. I never used to say OK. Never. So, I've learned how to do that. OK. Yes, so just relax, and let it roll, let it ride. It'll work itself out. So, I've learned how to do that as far as stress. I used to worry about and do everything myself, and stress myself out getting it done. So, I've learned how to stop doing that a lot.