Sometimes, I Still Don't Believe It All

Last updated: August 2023

As of this writing, I’ve been diagnosed with multiple sclerosis for over 23 years. I am 45 years old and have been disabled for the last 10 years because of the disease. Living with MS and what it has done to me should be something I am accustomed to (after all, I’ve had the disease for longer than I didn’t). My situation in life isn’t new, so it should come as no shock to me.

That’s not always the case, though. Even after all of these years, I still have moments where I simply can’t believe how things have unfolded.

It’s not all bad

Overall, I really am not complaining. Despite my health issues, I have a pretty decent life, far better than many other people. I’ve adapted to my situation over the years. In some ways, being diagnosed as young as I was gave me a bit more of an advantage as far as being adaptable and not set in my ways.

With the larger part of my life living with the disease, it’s what I now know the most. I imagine it would have been much harder if it had come on suddenly when I was already older and with a family. I wish I still had my career, but other than that, I think I’ve done very well with what I have. So while I occasionally complain and have hard times, I still think I am much better off than I could have been and doing much better than many people who don’t even have an incurable disease.

Until it is bad

While I think that my life is pretty good, that doesn’t mean that I don’t still just get overwhelmed at times. Every now and then, I’ll be cruising through my day, and then suddenly something will trigger me and make me start wondering why or what would have been. Out of nowhere, I will start thinking about my situation and just sit there in disbelief.

How could this have happened? How could I have been so young? Disabled? By age 35? What would have happened had I not gotten MS? Would I have had a family? Children? How can this have happened to me? How is this my life?

All bewildering questions with no reliable answers. I try not to think about that kind of stuff; it doesn’t do any good. It’s a foundation for a depressing day, but sometimes it’s hard for me to not think about that stuff.

Triggered by the world around me

I have times when these thoughts will come out of nowhere, but I have a lot of other times where they are triggered by the world around me. Warm weather means I typically won’t be feeling well, so that’s always a trigger.

Another trigger, that might be surprising to some, is Mondays. Not being able to work always hits me hard on Mondays and makes me start to question everything. It makes me upset. I mean, I remember my dad working when he was the age I am now, but I can’t, and that feels so wrong to me.

Most people are at work on Mondays; they dread Sunday nights because the next day is Monday. I dread Mondays because I can’t work. I dread Mondays because they bring my reality to the forefront. Because they remind me that I am not like everyone else. Because they remind me that this isn’t what I had planned for life.

It’s okay to break down sometimes

Again, I should probably be used to my lot in life at this point, but sometimes I’m still left stunned by it all. Most of the time I am fine, but then I start to think: this has to be a dream or nightmare, right? I am going to wake up, aren’t I? But I’m not asleep; this is my life.

I can wonder all I want, but I’ll never know what would have been. Who I might have become or what my life would have been like. I think it’s only natural to have those thoughts sometimes. If someone else in my situation confessed to me that they occasionally had those thoughts, that’s what I would say. I’d say there’d probably be something wrong if you didn’t occasionally have those thoughts.

As long as you don’t dwell on them, I think it’s OK to be shocked by our situation on occasion. So if you are occasionally overcome by these kinds of thoughts, it’s OK, just don’t let them consume you. Remember the good things you do have.

Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!

Devin

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