Flying home for Thanksgiving will be the first time I've flown since things got really bad. I'm 26 and I set up wheelchair service for the airport. Never in my life did I think so much could go wrong so fast.
I'm scared to see my brother and mom. They haven't seen me since April and stuff just has gotten worse. The pain from flying is going to be so bad. 3 hours in a plane seat. Not only that but parking, the bus ride to the airport, even being on the wheel chair will be so exhausting. I'm going to be in so much pain. It's really hard to handle that this is happening.
When I originally went to my pain management doctor she said her goal is to get her patients to participate in life. But due to my age she is reluctant. I take 30mg of hydrocodone a day and 50mg of tapentadol xr and it allows me to do chores some days. Some days I can shower. I know I metabolize oxycodone way better than hydrocodone from when I got it at hospitals. I don't know how but I need to get her to understand I'm miserable. I've tried.
I'm just having a really hard day today. I'm so scared of flying home and back. I'm scared of my future. I don't know if I'll get my leg function back to how it was. I don't know if the IVIG infusions will help. There are so many unknowns and I'm stuck. My pain management doctor could help me more but she doesn't. I'm grateful for what I have but it's not enough.
In just over a year my entire life flipped upside down. I moved to Denver to hike, mountain bike, snowboard, play sports, etc. I wanted a new life and now I can't do any of that. I try to not think about the future and just go day by day. I don't know. Simple things are so hard for me. I was so active, I did so many physical activities. I just walked from my apartment to the amazon locker to pick up a package which is a 3 minute walk each way and that hurt and got worse.
I don't know how I'm going to live the rest of my life like this if the IVIG doesn't work and my pain management keeps on being reluctant on my pain meds. I can't live life like this. I'm so embarrassed. Why did this happen to me. Every simple thing is so hard like unloading the dishwasher or laundry. I keep my clothes in the dryer and just take them out as I need them instead of folding because I dread it. It can cause so much pain. I just don't understand. I can get complete paralysis of my legs just by walking up or down a small hill where they seize uncontrollably. Or even laying on my back and lifting them up will do it.
I'm having such a hard time today. Everything I once knew and did is gone. My entire life. It's even affected my lungs. Some days I simply can never catchy breathe. It's hard to breathe some times.
I just don't know if I'll be able to hold it together when I see my mom. I've barely been holding it together recently in general. So much has gone wrong and it makes no sense. I just want to go outside. I want to go make new friends. But I can't. It's so embarrassing that this is happening to me. I just don't get it. Some days i can barely even watch TV it's so bad. I just want to be normal again. I want to have my life back but I don't know if I ever will
I’m sorry to hear that you’re having to go through this. I hit my head while skateboarding and had balance issues for a long time.
I wore a helmet and the fall wasn’t really that bad. But I’d randomly get vertigo, or just not be able to walk in a straight line. Sometimes I certain patterns would seem like they are coming towards me, kinda like tripping on some mushrooms.
Sometimes, it would feel like the ground was shaking. I’d have to look around at others to see if it was just me or an earthquake. If I was alone, I’d have to see if things were shaking.
Also anytime I walked, my eyes had a little trouble staying focused, it would be like if you were walking and someone was gently pushing your head to one side or the other and you needed a second to refocus your eyes.
Because of this, reading sometimes was pretty difficult.
Anyway, the reason I’m writing all this is to share that things got better. I almost never experience symptoms like this any more.
I might have missed it in the text, but I’m not sure what caused your condition. But it sounds like it was recent. Hopefully, it just needs time for your body to overcome it.
Wow I'm glad it got better for you. I get the same thing as you did with vertigo although not the ground shaking. I've never actually heard anyone mentioned it like your head is going side to side but that's what happens to me. Sometimes I can even see everything go around in a circle. I get the same thing with reading. Even just watching TV or playing video games when stuff is moving fast my entire world will rotate and I need to recalibrate
Oh yeah, I forgot the gaming! I don’t play much fps anymore. I can, but if I’m hungry it will make me dizzy.
I also cut out alcohol completely, I think that made a big difference. I didn’t really smoke pot around that time, but I was with some friends who were and it triggered vertigo like 24 hours later. Not sure if it was coincidence, but it happened like 2 or 3 times, so I avoid that too.
Yeah I don't drink anymore. I still use my dry herb vaporizer with CBD, CBG, and THC every night