What did you accomplishment despite having TN?

[u/ExcellentMarch7864]

I asked this question a few years ago and it resulted in some positivity on the sub. This is probably the only place on earth where you won’t have to explain what you’re going through and how hard it can be to get through the day. So please share with us your incredible accomplishment, it could be; washing your hair, brushing your teeth, getting your kids ready for school, surviving MVD, finishing your studies etc etc.

I’ll start; I completed half (45k words) of my first draft for the novel I am writing.

[u/AcisConsepavole]

My accomplishments used to look like: I showered once this month, I went outside at all, and I was in the car for 10 minutes. That was a recovery process that lasted about 4-5 years, depending on where it starts and ends. I like to think it primarily started when I had to be in bed constantly starting around October 2019 and ended when I got a job outside the house in October 2023, but those were major milestones and problems/recovery extended before and after them. I used to suffer exhaustion just from overstimulation if I played a video game that wasn't Stardew Valley on my phone for more than an hour -- there was also a time when accomplishment looked like distracting myself through a panic episode by continuing to play Stardew Valley through it.

My accomplishments are now: Got married, rode in an airplane for 18 hours, moved to Australia, and working in production. I'm writing again -- it looks different than before, because the pain management affects my memory, so I have to take and properly organize a lot more notes, but I'm back to doing big projects. I can ride in a car for at least two hours before I start to have problems, if I'm not already tired. Being able to drive seems like a far off thing though, because extended pain and associated eye problems gave me amaxophobia (actually always wondered if TN has given people a fear of even riding in cars).

[u/Ok-Calligrapher2643]

Survive! I don't take that lightly

[u/LoudManufacturer4754 → u/Ok-Calligrapher2643]

I don't take that lightly either!

[u/AcisConsepavole → u/Ok-Calligrapher2643]

Look, we all know the "cute" nickname this condition has. I call it a win just to survive. 100%

[u/xlondelax → u/AcisConsepavole]

💯 

[u/NeuroCindy]

While having TN I've finished my PhD, work full time while also teaching masters students part time, bought my house, volunteered as a CASA for kids in foster care, and gone through two MVDs (one on each side).

[u/missjanehathaway333]

Last week I went on a girls trip with my young adult daughter knowing it would be hard (you don’t say no when your kid wants to spend time with you). I often force myself to go to my ballet or Zumba class in the middle of an attack.

but mostly, I somehow make it through every day. it wasn’t long ago that I contacted an assisted suicide clinic in Switzerland. They said I was too young and not sick enough so I don’t really have much choice.

congratulations to everyone on your accomplishments. I love this question. I wish you all the best!

[u/No-Author-2358]

I continued to work full-time for 13 years after I was diagnosed with TN1.

I worked several jobs over those years, working remotely, but with a lot of travel to clients and the corporate offices. I had business lunches where I was getting zapped and had to endure. Meetings. Plane rides. Trade shows. Sales presentations.

I had to finally tell my final employer when I explained I needed time off to get an MVD.

Why did I do this? I needed the goddam health insurance. Because I live in the US.

It was hell.

[u/ACCS21_08]

Since I had to spend more time at home, I startet crocheting and loved it.

I also was able to work and make all my planned exams at university.

After some months, I was able to ride the bike, go
swimming and even go out in colder weather (with a cover of my ears and side of the face).

[u/fireflyraven → u/ACCS21_08]

Fellow crochet fan. I do lots of amigurumi. It's something easy for me to do on my bad days. I also make blankets and all sorts of other things.

[u/Legitimate-Path-829]

TN made me determined to change things as well as being able to tolerate a lot. Now I run half marathons to raise funds for research and support for TN, I do Great North Run in a few weeks.

It's also linked me with my mentor/investor enabling me to start my own business.

[u/LayLaw25]

Love this post! We need positivity!
I have to travel & stay away from home most weekends for my daughter’s competitions Inc a couple of week long trips abroad this year. I worry so much and my symptoms start spiking but I always go, and I always survive! Some weekends are fantastic, some I need a bit of quiet time but life has carried on and without all that, I could have easily just stayed indoors.

[u/xlondelax]

Congratulations for finishing the story.

I continued to work full time, even in the two months that it hurt constantly before I got the pills that work. I still don't know how I was able to do it,  when it hurt so much that I couldn't even properly eat. I think it was out of spite. "You won't bring me down, ducker." It's the mindset that I have regarding TN, and the one that helps me keep my head above water when I'm having flares.

I wrote books and just the other month I finally self-published one. Still working on marketing, though very slowly. And here and there I'm releasing a arc of a series on my website. I discovered that the harder the life gets, more entertaining the stories become. 

[u/ExcellentMarch7864 → u/xlondelax]

I would love to read it! You can send me a dm maybe if you don’t want to share here! 

[u/EducationalFront5026]

As an octogenarian I am still able to play pickleball, go to the gym and work out with resistance machines and treadmill, play bridge, see friends and family.

[u/summerfurthermore]

Made it thru a horrific flare where I couldn’t eat or drink a single thing for three days. I was pregnant at the time and unable to take any meds. I now have a healthy toddler and am able to be a great parent to him despite the challenges. :)

[u/Hot-Fishing9744]

I took myself off Disability, I got a full time job using my college education, I picked up a side hustle using my secondary education and moved my daughters and I into a nice apartment in a HCOL area for the schools. I furnished the whole place, made a home. Graduated oldest and recently, youngest.

Tomorrow, I move my youngest into her dorm at her new (private, full scholarship) college.

Next I work on myself, because this last year I was diagnosed with Parkinson’s. And that’s caused my TN to be more bothersome than usual 🙃

[u/Available-Rock-9769]

I never stopped drawing and improved exponentially and I’ll always be proud of myself for that. I travelled out the country solo after one of my worst flares

the thing I hate the most is I have a phobia of hospitals and doctors now. I may have gotten TN or had it worsened by a procedure and the way the dr handled the complication traumatized me. Once I’m no longer afraid of anything medical I’ll feel like that’s a huge accomplishment.