Two months ago today I walked into the emergency room at the hospital expecting to have a procedure done, maybe stay for a little while, and go home. That was a Thursday. I had no idea that I would not see my home again until Sunday, and that was ONLY because my mom convinced the doctor that she would take care of me when my husband couldn't. You can read about the entire story in the About Me tab at the top of my blog.
When I left the hospital, I was convinced I was going to be resuming normal activities by the time I saw the neurologist two weeks later. That didn't happen. I wrote about that in my May update. It amazes me that I wrote that a month ago already. In many ways I have come a long way; in many ways I am stuck spinning my wheels, never gaining any traction so I can move forward.
The good news is that I am not using my walker anymore. I can move from place to place without the fear of falling flat on my face- for the most part. Daniel is somewhat upset that I had him return the walker to the person we were borrowing it from (thank you Lana), because there are times I am unsteady. What he doesn't realize is that I wouldn't be using the walker for those moments, anyway. The diziness that I get now generally comes and goes very quickly. Or, maybe I'm just stubborn like my husband suggests. Either way, it is a huge relief to not have the bulky equipment taking up space in our tiny home.
The same is true of the shower chair. It is now a rare occasion when I feel uncomfortable taking a shower. When that happens I wait for Daniel to be home from work so he can help me or I can take a bath instead (yes, at 36-years-old I still don't bathe when I'm home alone, so I don't drown).
Unfortunately, the above is just about the only improvement I've seen. There were a couple of great days where I felt decent, but I don't know what happened to those times. They were a glimpse into what I thought was an upward swing. I even had eight straight hours one day where I felt fantastic (relatively speaking). I crashed hard after a grocery store trip, though, so that was pretty short-lived.
During the few days that I was feeling better, I was able to drive a little bit. That was exciting! I took a test run with Daniel for about a mile, then I drove to the grocery store a few times. I really thought I was making progress, but after three days I went back to not being able to see well enough to drive. That was actually pretty freaky, too. I had woken up feeling good, and we went to Home Depot. I drove there. On the way back, though, I pulled over and told Daniel he needed to drive. All of the sudden my eyes weren't focusing again, my head clouded up, and it was a struggle to keep my eyes open. Ever since that day, I have been unable to drive and the pain level has been back to where it was before I started showing improvement. In other words, outside of the extreme dizziness, I am back to square one.
For the past week I have been having daily headaches again- the kind where I wake up with them and go to bed with the same headache at night. It feels like someone is squeezing the back of my head. The front of my head feel stuffy, like I have a sinus infection. My eyes feel like they are pushed too close together.
The headaches vary in intensity, but I am back to taking pain pills frequently. I usually sit and wait until I just can't stand the pain anymore, then I take the medication. I just won't live my life on pain medication. Excedrin, Advil, and Tylenol don't even begin to touch the pain, and I honestly think the only reason the Vicodin and Percocet do is because they cause me to sleep. A lot of people explain these types of pain medication by saying, "The pain is still there. You're just so doped up you don't care." I would say that is fairly accurate.
My feet still hurt something awful. When I am walking, it feels like my heal is being pulled one way, and my toes and being pulled another. The entire bottom of my foot feels like a knife has been put through it, then pulled back out again. It feels better if I walk flat-footed, but that gets tiring and doesn't take away the pain completely, so for the most part I LOOK like I'm walking okay. Until you see the tears in my eyes once the day has gone on too long. When I get frustrated I'll start doing my duck walk. It actually looks more like I have snow shoes tied to my feet because I bend my knees but don't allow my foot to flex in its natural rhythm. When I am not in motion, the pain doesn't stop, either. It feels like someone is pushing up on the bottom of my foot with their thumb. When I am awake, this pain is pretty constant. I don't think there is a time I am NOT aware of the pain in my feet.
I have a new symptom that developed last Friday. I am swollen all over my body, and my joints are starting to hurt. I had to take my wedding and mother's rings off Friday night because Daniel was afraid we would have to go to the hospital to have them removed if I waited any longer. I cried a lot over that one. It's a good thing I've learned to listen to my husband, though. He had a hard time getting my wedding set off and was pretty concerned about that. My feet also had the impression of the tops of my shoes imprinted on them. THAT was interesting! It wasn't just a little mark like I've had before. This would have been really neat if I hadn't been worried about the fact that my feet were also purple. Fortunately they started getting their color back as soon as Daniel massaged them a bit. I'll see if this continues, then I'll call the doctor to see if he wants me to come in. This all happened after I attempted to go to an art exhibit for a little while, so maybe if I just stay on the couch we can get the swelling to cease.
Finally, my emotional state isn't exactly what I would call stable right now. I cry at the drop of a hat anymore. Everything is so much more frustrating than it seems like it should be. I'm gaining weight, and that's certainly not helping my self image any.
I have found an online support group for people that have the type of nerve damage I do. I honestly can't say if it helps or if it causes me more distress. In ways it is nice to talk to people who have the same pain I do, but it is also frustrating that these people have dealt with this for years- some as long as five already. I want to stay hopeful for a full recovery, but at this point it isn't looking good. Okay, to be realistic I just don't have the emotional strength to continue to be as optimistic as I was even a month ago. At some point it just seems easier to accept this disease for what it is and try to figure out how to build a happy life this way. If I get better, great! If this is what life has to offer, I need to find a way to be okay with that. The sooner, the better.
That brings me to the decision I have made regarding work. I have stopped putting in job applications because I will not be working next semester. I had continued to look for work in the hopes that I would recover in time to teach. However, it is clear that even if I start feeling better now, I will not be prepared for the long hours and the excitement that my first year of teaching would bring.
Well, thanks for hanging in there this long to read this very long update. I wanted to get it all in so I don't have to think about it again for another month. I wish I had a more positive update to bring to you, but this is it. I hope I have something better to report next month.