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 really sorry. I wish I had any advice. Mind if I ask what happened?
My neurologist believes I developed CIDP and many other complications from it
It’s your family, of all the people in the world they’re the ones who should be the most understanding of your condition and your incapacity to go there this year, just tell them how you feel and if they don’t understand then tell them you’re very sorry and you hope they’ll be able to forgive you for skipping it this year.
It’s not your fault.
Man, I wish I could give you specific advice to make everything better but I know from personal experience that’s not possible. All I can really say is stick in there and try and find something to put your focus on when you start getting freaked out and worried.
I’m in my early 30’s and in a weirdly similar situation as you. I was super active (used to live in Denver, ran the Boulder Boulder every year) and worked a high pace job that I enjoyed but then I had a lower back injury that started out minor and developed into daily constant pain. I’ve been out of work for 8 months and practically permanently sedentary. Going for a 2 hour car ride wrecked me for a week. I’ve tried most types of medicine, traditional and homeopathic. All different types of physical therapy and not much is making a difference.
It really does suck. I lost a super well paying job with great benefits and have no idea what my future is going to look like. It’s entirely understandable that people in our shoes will have doubts and fears and worries.
The few things that have helped me so far are having understanding and helpful people around me and searching for silver lining.
Hopefully your family isn’t some sort of horror story you would find on 4chan or Reddit but more than likely they are going to be understanding and as long as you communicate your limitations hopefully they will be respectful of them. I’ve been told there’s nothing to be ashamed of for people in our situation, it happens all the time. I’m still struggling to believe that one.
Silver lining may seem impossible but I promise they are their of you look for them.
For example, you will probably be able to save a TON of money. Have you SEEN how absurd the prices are for skiing?!? There’s a TON of other things you could enjoy with the cost of a lift ticket. Don’t need to buy $600 zipp wheels if you can’t ride a bicycle.
Boarding planes first is also a super cool perk.
If you end up handicap you will be able to get some of the best seats in the house for concerts and movies. Sometimes with a hefty discount to boot.
Want to learn a new skill? You’ve got all the time in the world and most colleges (community or otherwise) have programs specifically for people with disabilities that are tailored to work around their abilities.
I discovered that I would rather clean the house and organize than do nothing when trapped at home. I think my internal logic is that if I’m going to be sitting around in pain id rather do it in a nice clean and organized space. My cleaning initially started just as a way to try and ignore the pain by doing something, ANYTHING at all but it became a thing for me to focus on and plan for despite my injury.
This may not work for everyone but comparing myself to others gives me just enough shame to push through my laziness and depression to work harder. Just watching some para-Olympics or special Olympics and seeing what people can achieve who are WAY worse of than I am is a real kick in the pants. Your mileage may vary.
I’m typing this comment at 1:20 AM despite the fact that I have to be up in 2 hours to leave for my first flight since getting injured. I’ve got a six hour journey ahead of me and am dreading every second of it.
Instead of focusing on the terror of the upcoming journey I’m finding other things to do.
I just watched an hour long video about a refrigerator and it was fascinating and I can’t wait to look into other fridges just to see what kind of systems I might be able to recognize with my new rights knowledge.
I guess when it’s all said and done the only thing that we can do in situations like ours is to look for anything that gives us a target for the future and let that be our guide through this. It’s looking like I might end up on full disability which is brutal and sucks at my age. But in my attempts to find a bright side I now have the opportunity to become that kooky guy who is REALLY into this eccentric hobby.
Now I just have to pick the hobby…
If you ever feel like chatting with a complete stranger feel free to send me a message.
I’m going to PM you but thank you for this comment. This was the first thing I read since I’ve woke up and this made my day. You just made me start off my day on a high note. This made me feel all the emotions
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
I had extreme nerve pain resulting from complications due to cancer surgery. Tried absolutely everything, was on a large dose of methadone daily just to be able to function at all and take care of my four kids. There were certainly times where I had no hope of anything helping. I got extremely lucky with the implantation of a TENS unit in my spine to effectively cause neural static that would hopefully block some of the pain signals. I had it about a year before I realized one day that it wasn’t just helping when it was on, but even if I didn’t use it at all. That day, when I realized that the pain was low enough that I could stop taking methadone I just straight dumped all my pills. That, of course, was incredibly stupid and could have killed me from the withdrawals, but in the end was liberating. A few days after that I woke up to the pain being almost gone. I was able to walk normally without searing pain in my legs. Keep in mind this device was not supposed to cure my condition, just provide temporary small relief.
