I was 'lucky' in that I had my first relapse in the last semester of my Master's program, so I could limp along and finish the degree and decide not to pursue a PhD. An academic career was right out, especially as a first-generation student.
I decided to go to gradschool after the big relapse took me down. I’m going to do this in spite of MS. Fuck MS. My MS has hit me in both eyes and ruined my old career (I was a pilot).
Anyway, I’m going to push myself to build new neurons faster than it bashes the old ones. I’m learning Spanish, do some programming for school every day, and walk a lot. It helps - even if my vision is pretty bad I feel it really helps.
I did 2 years of Tysabri and then switched to Lemtrada in January. One more dose of that and then theoretically I’m done. Going backpacking this summer in Spain as a big “fuck you” to MS. I’m slowed down quite a bit but not beaten. I will get better or die trying.
It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
My old career is over (hard to fly if you can’t see well), the new one is going to be software engineering/ AI stuff in spite of this shit.
Whatever you do don’t give up. MS is a cruel bitch, but I plan on outlasting this asshole. We’re not far from a real restorative cure.
> It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
Oh my God, the hit to executive functioning is real. And I had zero compensatory structures in place: I specialized in Linguistics and spent most of my high school + undergrad years in language classes, which meant I had an insane memory and was used to relying on it. Also the emotional lability sucks: I cry and laugh in odd situations now and it's so detrimental to being taken seriously.
I'm sorry to hear about your sight: Given how much you relied on it, that has to be a loss. (My vision always sucked - I had eye surgery when I was 3 - so I actually had a bought of optic neuritis and didn't know because 'eh my eyes are always fucked up').
I absolutely agree we can't let MS control our lives. My purpose for downshifting is because the diagnosis shook my worldview enough for me to consider what I actually valued and therefore center it. In my case, I'm a librarian/archivist who's likely to be one of the last people living with a memory of the beginning Web + some of its predecessors (I'm female and from a family with multiple supercentenarians - I have a fair shot at making it to the Web's 100th anniversary) and I think that the training and first-hand knowledge to sort through and add context to what we have from those eras (especially pre IA and Google) is going to be very important but also that interest isn't going to really pick up for another ~30-40 years, so my third responsibility is to live a life that maximizes my odds of living and functioning into my 80s+. First is my own wellbeing and second being that of my family/people.
My diagnosis also completely shattered my worldview and I've had to rebuild my values and morals from the ground up and it turns out that a lot of the goals I used to have are odious to me now.
I was 'lucky' in that I had my first relapse in the last semester of my Master's program, so I could limp along and finish the degree and decide not to pursue a PhD. An academic career was right out, especially as a first-generation student.
I decided to go to gradschool after the big relapse took me down. I’m going to do this in spite of MS. Fuck MS. My MS has hit me in both eyes and ruined my old career (I was a pilot).
Anyway, I’m going to push myself to build new neurons faster than it bashes the old ones. I’m learning Spanish, do some programming for school every day, and walk a lot. It helps - even if my vision is pretty bad I feel it really helps.
I did 2 years of Tysabri and then switched to Lemtrada in January. One more dose of that and then theoretically I’m done. Going backpacking this summer in Spain as a big “fuck you” to MS. I’m slowed down quite a bit but not beaten. I will get better or die trying.
It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
My old career is over (hard to fly if you can’t see well), the new one is going to be software engineering/ AI stuff in spite of this shit.
Whatever you do don’t give up. MS is a cruel bitch, but I plan on outlasting this asshole. We’re not far from a real restorative cure.
> It is very hard though, things take longer to do - it’s like I have ADD now or something? I have constructed some compensatory strategies, but yeah… it is hard. Hard to explain but it’s definitely a real thing and especially if I don’t get enough sleep.
Oh my God, the hit to executive functioning is real. And I had zero compensatory structures in place: I specialized in Linguistics and spent most of my high school + undergrad years in language classes, which meant I had an insane memory and was used to relying on it. Also the emotional lability sucks: I cry and laugh in odd situations now and it's so detrimental to being taken seriously.
I'm sorry to hear about your sight: Given how much you relied on it, that has to be a loss. (My vision always sucked - I had eye surgery when I was 3 - so I actually had a bought of optic neuritis and didn't know because 'eh my eyes are always fucked up').
I absolutely agree we can't let MS control our lives. My purpose for downshifting is because the diagnosis shook my worldview enough for me to consider what I actually valued and therefore center it. In my case, I'm a librarian/archivist who's likely to be one of the last people living with a memory of the beginning Web + some of its predecessors (I'm female and from a family with multiple supercentenarians - I have a fair shot at making it to the Web's 100th anniversary) and I think that the training and first-hand knowledge to sort through and add context to what we have from those eras (especially pre IA and Google) is going to be very important but also that interest isn't going to really pick up for another ~30-40 years, so my third responsibility is to live a life that maximizes my odds of living and functioning into my 80s+. First is my own wellbeing and second being that of my family/people.
My diagnosis also completely shattered my worldview and I've had to rebuild my values and morals from the ground up and it turns out that a lot of the goals I used to have are odious to me now.
> on outlasting this asshole
Spite = best motivator.
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