The last few weeks have been really busy in terms of communications through my website. I have had two nursing students- one from California and one from Kentucky – whose professors have shown my YouTube video in their class. This is not the first time either; my sister in law’s teacher also showed my video to their class a few weeks ago. First of all, I am so pleased that my video is impacting these teachers enough to want to share with their students (and is even reaching people as far away as California and Kentucky). This is great awareness for Guillain-Barre, and great learning for these future nurses. Secondly, it makes me even happier to know that these students, who don’t even know someone with GBS, are that impacted by my video, that they are buying my book and reaching out to email me to tell me how I much I have inspired them.
I have also been in touch with numerous patients and family members of those dealing with GBS in the last few weeks. One lady, a young woman in New Zealand, was diagnosed just 9 weeks after the birth of her child. She has a severe case like mine and is in the ICU breathing on a tube. It brings back a lot of memories, thinking back to that time when I was so paralyzed that I couldn’t even hold my newborn Casey…but look how far I have come now, and one day she will be able to hold her child again. I’ve been in touch with her family, and they have already read my book to her. I hope that she found it comforting; knowing that there is someone out there that has gone through what she is. One of the mains reasons I wrote my book is for situations like this, and I hope it helps not only her but her family as well.
I have also been in touch with a young man in England, who posted my video on his Facebook page for others to see what he is going through. He is 26 years old, which is the same age that I was when I was diagnosed. He has just learned that he is going to be a father to his first child which is one more reason for him to fight as hard as he can to get back to his life.
This week I started Chalean Extreme, another home workout program. It’s quite a bit different than Insanity so far, which I’ll need to get used to. Chalean Extreme is more focused on weight training where Insanity is high intensity cardio. I’m used to working out at a very fast pace with a very high heart rate…where this is slower movements but with extremely heavy weights. Don’t get me wrong, it is still very difficult, just a different workout is all. I’m not able to lift all that much yet either but I know as the weeks go by I will get stronger and stronger, just like with Insanity.
Our family is headed to Golden this weekend, to go visit my cousin and his girlfriend, and we are going to hit up the ski hill on Sunday. I am so excited; it’s been over 3 years since I’ve skied and I’m looking forward to getting up on the hill again. But of course I am a little nervous; I haven’t skied since GBS so it’s hard to say how I’ll do but I’m willing to give it a try! My ankles are still weak but I am overall stronger, so hopefully that helps me.
At the end of April, my mom and I are heading to Toronto for a GBS Conference. I am really looking forward to meeting even more people that have been through what I have, to some degree. I am certainly not there to sell my book but I’m sure a few will be sold to those wanting to hear more about what I went through. And again I hope that those currently struggling with issues from GBS find my story beneficial and inspiring.
Meeting the many people that will be at the conference will remind me that although GBS is a rare disease, there is still a shocking amount of people who have had it or will get it. Thinking about some of the people I have been in contact with this past week, who are going though similar things that I did, brings back a lot of memories and I can’t help but feel terrible for them. It gives me that same feeling I felt back in ICU – that pit in the bottom of my stomach- thinking about all they are going through and all that they are going to endure over the next months- even years. They really have no idea, and there really isn’t a way to prepare them for it. But the best thing about GBS is that there is a high chance of making a full recovery. It will take time, but these people have every reason to believe that they can get their life back. And not many diseases allow for that.
For anyone that is dealing with GBS, whether it’s still in the acute stage, or you are already at home recovering, please remember this:
It may feel like you are never going to wake up from this nightmare but I assure you, one day you will. There is a light at the end of the tunnel even if you can’t see it right now. Stay positive and take each day at a time. Don’t stress about your future, just focus on getting through the challenges you are facing right now. You can deal with tomorrow’s challenges, tomorrow. You will get through this. Surround yourself with positive people that will lift you up rather than bring you down. Instead of always thinking about the things that you are unable to do, try to find things that you are able to do, that make you happy and do them every day. When I was in the ICU, the little things for me included watching the news in the morning to help ease the isolation feeling and my mom reading me my Facebook wall to lift my spirits. And when I was recuperating at home, it was spending time with friends to take my mind off of my illness. Find a hobby that you love, and do it. It’s these little things that will help you get through your days. GBS is the hardest thing you will ever face in your life. And you may not think you are strong enough to handle it, but I assure you, you are stronger than you know. And one day I promise, you will look back and see just how far you have come. I know I do, every day.