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Living with Polyneuropathy CIDP, GBS, & CMT

GBS Warrior

Hello I’m new to this group. This is my first support group. I have been battling GBS for a little over a year and a half and well it’s been a challenge to say the least. I’m an electrical engineer that nobody wanted to hire(not the greatest GPA), so I unsuccessfully tried to start businesses. Then GBS decided to kick my ass and i found myself without any insurance or money. I was told I had a mild case and was extremely lucky that I got treated when i did because i was probably a few hours away from it shutting down my breathing. After I was released from the hospital i couldn’t afford physical therapy so I have been my own physical therapist taking responsibility for my own recovery. It was painful and frustrating at times but I’m tough and my personal goal was being able to play guitar and disc golf again.(I can do both again btw tho I’m nowhere as good as i used to be)

I’ve made some really good progress in my recovery as I am able to do many things for myself again, however I’ve recently been struggling mentally to keep my emotions in check. I live with my dad and aunt and while my dad is very understanding of what i am going through my aunt is intentionally making my life more difficult. I’m so angry and frustrated that it makes life cumbersome for me most of the time. I’m getting to the point where i just don’t want to be here and I’m fighting to try to stay up beat but the mental fatigue is real. As many of you know, energy is a limited resource for people like me and I feel my energy being drained more by my agitated state.

I’m really glad i found this site. Just knowing i can talk with people that know what I’m going through has given me some much needed hope. I’ve been alone in my recovery so far but I’ve learned that I don’t have to be. Anyways thanks for reading and I’m looking forward to talking with you all.

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Mos, so glad you joined. And WOW! Glad to hear you are a fighter. I was training for a marathon when I got struck. So I too know how fight through when things get tough. I couldn’t walk in 2017, but I am now playing frisbee golf too. It’s a great way to get out and walk with something to do. I can’t run, but Amy e one day soon.
I can also speak to your aunt making life more difficult on top of a very difficult struggle. My wife helped dearly with my physical needs (in and out of the house, car, shower chair, to dr. appts…) but emotionally treated me awful. After 2 years I confronted her and she said was, I was angry. Not, I am so sorry, but I was angry (she was angry before all this happened, but decided to take it out on me after I got sick) She would act like she cared so much in public, but that was to save face with friends. I just let it go. I agree with her on most discussions just to get her to stop talking bc I don’t have the energy to to discuss silly things or have to be right on every topic. Others don’t understand the fatigue that goes along with an autoimmune disease. We look good on the outside so they assume we are good to go.
So keep up the good fight.
I’m in Michigan if you are ever in town let’s play a round of golf.
Where are you from?

Apyper65 it is nice to meet you. I’m from the Houston area and I love disc golf. I’ve been going to play with my dad since I was 10, tho I was never really good until 20 years later. Having GBS has changed my game a bit because I can’t comfortably take my approach steps for my drives so I have adapted a standing still stance and shift my weight from front to back. I can’t really run either, but i can move fast for a few mins if i have to now. But that took a lot of time on a stationary bike to get me there. It took me a year after relearning to walk before I felt strong enough to go walk the local course, but now I’m beating my dad and a good friend of mine consistently. To be honest playing disc golf is one of the only places I almost feel normal again. And if I’m ever in Michigan I will definitely take you up on that offer.

I used to play a bunch of cornhole too, but I left the league I founded because my co- founders stole money from me and the league and I put them in charge of the money. It wasn’t much money but it was the principle. And because I didn’t write rules in for how to deal with something like that I couldn’t just kick them out of the league. Long story even longer, they still play in the league so I won’t until they apologize to me or they no longer play there. I just don’t have the energy to deal with crap like that and just being around them gives me anxiety. To make it worse they are my next door neighbors lol. The good thing was I made sure the league knew exactly what happened and was in good hands before I left. I initially set up the format to match ACL so we could eventually be affiliated with them and the new leadership made it happen. I feel sad that wasn’t there to be part of that but I had to move on and separate myself from the situation.

I guess the silver lining is that my aunt and I have some common ground in that we both don’t care much for our neighbor, and deep down I know she loves me but she still mad at me from before I got GBS. We bumped heads quite a bit. Currently I’m trying to collaborate with my cousin’s DoJang to start an after school program for kids to learn some martial arts and maybe some coding and problem solving too. I figure there is so much I can’t control now that I might as well focus on what I can.

Any ways I’m glad to meet you. It’s been pretty lonely not having anyone that knows what it like. Take care

Mos