So my Disney World trip went pretty well. We were there for 8 days and 7 nights. I did need numerous breaks and couldn't do a full 12+ hour day. It was difficult because I could remember how much easier it was for me 5 years ago before this illness came on, but trying to compare myself to that person is useless. I was very lucky and got a disabled person's pass that basically allowed me to skip the lines and also sit close to the stage for shows (I have some vision loss from Intercranial Hypertension years ago). Technically the pass (called the guest assistant card) is just supposed to give the holder a place to sit while they wait, but it ends up just being a permanent fastpass. Now I say this not because I want people to take advantage of the system (I beg that you do not), however not many people know about this tool and it is extremely helpful to those who need it. It literally allows me to enjoy Disney. My stamina is still not what it used to be and standing for hours is rough. I did notice that my headaches were pretty bad, but I didn't notice them until the end of the day. My stimulator allowed me to take this trip and I am truly thankful. Since getting back I have found a pain management counselor. It was something I've been meaning to do for months, but I continually put it off. I knew I needed help dealing with the pain I still have, but I honestly didn't know where to go. I got a referral from my primary care physician and after one visit I'm pretty happy with this therapist. He seems to understand pain. I guess I am resistant to this process because it's not easy. Confronting fears and dealing with the idea that I may never actually be 100% pain free is scary. Don't get me wrong, I am doing so much better than before the surgery, but it's not perfect. I think that before the stimulator I couldn't have even gone to therapy because it was too hard. Now that I am in considerably less pain things are easier to deal with.
I no longer use my stimulator every day. I would say probably every other day or so. I have it on for 12 hours and turn it off at night. When I had the trial stimulator the feeling was soothing and helped me sleep, but more recently it annoys me when I try to doze off. I think this is because I now go to sleep on my stomach and the stimulation is more intense when my forehead is pressed into the pillow. My pain relief is still amazing. I feel like I finally get the hang of how to use the stimulator effectively. I pretty much only use one of the four programs. The others don't offer as much relief. And since I don't have the stimulator on constantly, I don't get headaches from over stimulation (which does happen).
I would like to wish everyone Happy Holidays! If you have to travel be safe!
