Caleb and Felicity were quite excited this morning!! Nice to see the big smiles on their face. This year has been hard as I love Christmas so much but unfortunately spending the holidays in the hospital. Kids have a way to brighten your day! I’m happy to spend Christmas Day with them.
Some happy to see them and Merry Christmas to everyone! Hope you are all enjoying the holidays. For anyone recovering from GBS find your reason to fight. My kids are my why, what’s your why?
Tonight I surprised the kids by showing up to Caleb’s basketball practice at the Arnold H. McLeod School in Moncton. They had no idea I was home in Moncton for the holidays. They thought I was coming home on Friday. It was a nice surprise and I’m so glad to be home for a little. When the kids seen me they ran up and gave me a big hug. It felt some good to see them, talk to them and be able to hold them in my arms so to speak or them hold me really, but I’ll take it. 🙂 It will be a tease to be home for a bit only to have to leave again but I’m going to make the best of my time while I’m home.
It was the first time I was out in the public since this all started back on August 1st. I wasn’t sure this was going to work out for me as planned as issues happened when White Cab arrived. The wheelchair I was in was too big for the ramp. The driver was great even though he was on a tight schedule he waited for the nurses to put me in another wheelchair that would fit. The nurses rushed me back upstairs, put me in the lift and switched wheelchairs. It was the most uncomfortable and painful but it was worth it for my kids. Nothing was stopping me from going. I couldn’t get a day pass so I had to go against doctors orders and sign a form. It was worth every painful second in that chair to go see my kids. It also felt some good to actually do something and get out.
The hard part came next after my son’s basketball practice and saying good bye to the kids and going back to the hospital. My son Caleb is always okay but my young daughter Felicity always takes it hard. It breaks my heart every time to see my daughter this way. My eyes tear up every time. My daughter was fine the whole time as we waited for my drive to arrive. It goes from joking, playing around then it hits her out of nowhere as she knows what’s coming. She runs into her mothers arms and the tears start coming. Cheyenne and I always tries to comfort her and saying it’s okay. It’s hard for me to watch this every time even as I write my eyes get watery thinking of those moments your child is hurting. I love my kids so much.
“My heart hurts to say good bye….”
After my drive arrived and Cheyenne and the kids left I messaged Cheyenne later to make sure my daughter was okay. This is what Felicity says to her mother, “My heart hurts to say good bye.” This is enough to make anyone tear up especially coming from a 6 year old girl. It sucks when something that happens to you affects your child and there’s nothing you can do other then reassure them everything’s okay, comfort them, ensure them I’m getting better and I’ll be home as soon as I can. It was a great day and a sad day too, I hate seeing my child hurting.
While I’m home I’m looking forward to getting out and doing quite a few things with the kids and seeing them as much as I can. We’re going out for a family movie soon at the theatre while I’m home, I can’t wait. Glad to be home!
Day 140 Looks like I’m heading back home to the Moncton Hospital today as a bed has opened up. I am leaving around 1pm this afternoon. Going back home for Christmas as the Stan Cassidy Rehabilitation Centre closes down over the holidays. I was surprised they close down actually but happy to come home and see the kids. Looking forward to coming home for the holidays.
In case people don’t know the next time you get a flu shot please know that Guillain Barre Syndrome, GBS, is a possibility and this should be explained to you before you get it. Not many people know what Guillain Barre Syndrome is, also referred to as GBS but a patient that was here before me got GBS directly after getting a flu shot.
What I’m going through could happen to you. The chances are slim but the chance is there. I know I can’t get a flu shot as I have increased risk of getting GBS again. Know the risk before you get it as it’s on the form they need to explain this to you before getting it. The risk of getting Guillain Barre Syndrome from a flu shot is real.
Day 134 today I did a total of 8.2 miles on the bike, 2 miles this morning in 20 minutes and another 6.2 miles in 53 minutes this afternoon. I’m going to sleep good tonight with all the physio and OT today that includes leg exercises, arm exercises and all kinds of stretching. I’ve asked them to further increase schedule as I just got to get home. I am looking forward coming home for a few weeks at Christmas just unfortunately I have to come back after the new year.
Today was also the first day I was able wheel myself in the wheelchair in a long straight hallway. My arms and shoulders have been getting stronger and I decided to give it a try after supper to go back to my room and I did pretty good. Nurse lined me up and off I went…lol till I had to turn, lol when there’s a will there is a way! Glad more is coming back…
The nurses here that take care me are beyond impressed with the progress they see on a daily and weekly basis. For me it seems slow but for them they see changes all the time. They always ask me what my goal is for today as I always have one. They like my drive I have.
The doctor came in this morning to check my mobility and progress and was happy to see how far I’ve come since coming here on October 1st. We are both aware how long this road to recovery will be as the nerves only heal at a rate of 1 mm a day. He asked me how tall i was and I said 6’4 and he said oh God, lol I bet you wish you were shorter right about now as it takes many millimeters to make up you’re a complete nerves system. Many more months to recovery but it’s coming one day at a time.
Day 133 Today on the bike I did 6.2 miles in 53 minutes! No breaks. I had extra time after my session and was hoping to hit 7 miles in 60 minutes but ran out of time. My previous best was 4.3 miles in 46 minutes. Leg strength and muscular endurance continue to improve from the use of the SciFit bike as part of my Physiotherapy program everyday. Things are coming along!!
Tonight when I was in bed laying on my back I was able to bring my right arm up over my head and touch my head with my hand for the first time. I tell you what it felt some good to be able to scratch my face or my head. After not having being able to move my arms for so long I was quite happy to see that I now could with my right arm. That was the worst not been able to scratch an itch. The other worst out of this whole thing is when you have a damn fruit fly flying around your face and you can’t do nothing about it other then blow at it lol…. Glad to have more mobility coming in my right arm. I never thought this day would ever come. Today was a good day! Hoping for continued progress and improvements in the future.
Day 131 Today I went on the SciFit bike and I did 4 miles in 42 minutes on level 6. Last Wednesday I had done 4.3 miles in 46 minutes on level 5. To help with my Physiotherapy program I decided I’m going to increase the level of difficulty each week going forward to further increase leg strength and muscular endurance in my legs. The strengthening of my legs seems to be going well. As part of my Physiotherapy I go on the SciFit bike every day.
Before going on the SciFit bike this morning they put me in front of the wall that contains bars for me to hold onto and grab to try and stand up from the wheelchair. It went better this time around as I get more lift off but I was still unable to stand up. It’s disappointing for sure. The physiotherapists were happy as I’m getting close in their eyes but for me I don’t see it like that. I just want to stand now! They keep saying baby steps, it’s getting better each time, you’re improving and that I’ll get there. For me it’s so slow. With me increasing the difficulty on the bike each week I’m hoping the next time around i’ll be able to and finally stand up once again.
Today I also learned that next week I’ll be heading back to the Moncton Hospital as The Stan Cassidy Rehabilitation Centre in Fredericton closes down for the holidays. I would then be returning back to Fredericton on January 2. I can’t wait to come home and see my family, my children. Looking forward to coming home.
Day 126 and I’m back in Physiotherapy on the SciFit bike this morning as I continue to work on increasing muscular endurance and leg strength so that one day I’ll be able to walk again. As part of my Physiotherapy I work out my legs everyday which is helping me recover from Guillain Barre Syndrome.
For today someone never showed up for their appointment so I got extra time on the SciFit bike. I did 4.3 miles in 46 minutes on level 5 and without any breaks. I was hoping to reach 5 miles but ran out of time. Legs are feeling good! I continue to reach new goals and hopefully all my hard work and determination will pay off. I just have to keep working hard, stay focused and stay positive that the rest will all come together in the end. My muscular endurance and leg strength are improving which is a great sign for my recovery.
Day 124, today in Physiotherapy is one of my first few attempts at walking between the parallel bars supported by a sling. It gets a little easier each time but still very hard. None of this journey has been easy, the hardest thing I’ve ever had to do. Hopefully in time I’ll be walking once again.
My daily schedule pretty much consists of Physiotherapy 3 times a day and occupational therapy 3 times a day as well. In physio I was back between the parallel bars this morning, on the bike in the afternoon followed by stretching after that. This is my start to the week so far.
On the SciFit bike I did another 3 miles in 32 minutes with the difficulty increased to level five. Last week I did 3 miles in 31 minutes on level one. I’m looking at getting my legs stronger faster now by increasing the difficulty. It’s a long road to recovery from Guillain Barre Syndrome but it’s coming. Just trying to speed my GBS recovery time up.