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Category: Living With GBS

Post about my battle with Guillain-Barré syndrome.

Physiotherapy

Physiotherapy

It has been a while since I have done any writing and there was no real good reason other that I wasn’t myself on the pills.

The tale started shortly after I had gotten out of the hospital. I was really hoping on a more abridged and unrealistic timeline for my recovery. I was in the City Market when I got the initial call for the referral, I had an appointment for my EMG so I procrastinated starting.

Then as I got closer to the start of Physio the first roadblock came up. I was booked for the wrong type of physiotherapist. I needed a Neuro one. Then the one I had been rebooked to left. I received a call that perhaps St. Joseph’s hospital had a shorter list. Once again it was the wrong type at first, but that was resolved early.

As we started, she gave me a few exercises as we met a few times I week and I was starting to see results and was really happy. During these sessions, my mobility improved and I could start raising my right arm over my head again. In the middle of these sessions, I finally had my hand surgery and needed a few weeks to heal.

Once things resumed, my sessions not long after ended and I was given exercises to work on which I did for a while.

Around this time I also started taking the anti-anxiety pills and stopped wearing my orthotic. The aftermath of this actually helped me get more active and stronger as at first I was motivated to do more and not be limited by the pain of the AFO.

Anti-Anxiety

Anti-Anxiety

Back in June, I was in a position that I was struggling with motivation to do anything. There was constant nervousness about falling and not able to get up on my own and I was doing very little.

After talking with my doctor, based on online research, I read that it was a common side-effect of Gabapentin. A common reoccurring solution was to also take a mild dose of Sertraline.

Once I started taking the Sertraline, things improved a lot. I started doing more and focusing on my exercises. I also stopped crying myself to sleep every night.

Now fast forward to early this year, I was taken off the Gabapentin. It was causing weight gain and as I learned, most of the remaining pain was a side-effect of it. Which left me with just the Sertraline.

As I soul searched it really wasn’t making me feel any less lonely, or even helping with dating. In fact, it made me less motivated to go out and meet people. I went to a dance for a friend, but couldn’t bring myself to go in. My friend was having a special night and the Arcade Bar, and I struggled with motivations to go. I’ve been really tired a lot. I couldn’t even go to comedy shows that I loved.

I would make it to the parking lot and then give up. Staying in a cloud of loneliness. I haven’t been even able to write these posts. So now my prescription is over and I have stopped taking it.

Today I even waxed my car today that I lacked the motivation to do.

“Full Out” Review

“Full Out” Review

To say that I would never watch a gymnastics movie, while that. Is simply not true. I loved the movie “Stick It” and must have seen that movie dozens of times. The movie I just saw was “Full Out”. This is based on the true story of Ariana Berlin. Early on in the movie, she gets into a car accident with her mother. After a period in a coma and severe injuries, she is faced with not initially walking and is in the hospital dealing with physiotherapy.

Having her whole dreams taken away and her meaning in life. She initially struggles to find meaning in life and where her new life will take her. This road leads to hip-hop dancing and eventually back to gymnastics with a warm and fuzzy ending.

Given what I have been through I can really relate to her struggles. Even before this I never really had big goals and was waiting for inspiration. Now I feel like I need to do something and want to find that something but many possibilities a beyond large rolling Austrian Alps, but a big rocky Swiss Alps now.

This movie is available on Netflix and worth a watch.

Fundy Fringe Festival #5

Fundy Fringe Festival #5

This summer I volunteered with the Fundy Fringe Festival again. Giving my physical limitations I was really worried if I could actually do it. It has been the highlight of my summers for the past several years and I really didn’t want to miss out.

This story begins with the gathering on May 20th. At this point, I had just started to go back to work and was trying to get my life back to normal. I really wanted to go to this event as a way to get out and try to be a bit social. It was a great night and I had so much fun even if it was a struggle to get there.

I then filled out the volunteer application and was a bit unsure what I would be able to do so I applied for Captain again, and venue tech, and bartender, and I think HUB volunteer. I then didn’t hear much of anything until shortly before the festival, on NB Day. I was on a road-trip of the province and while as I was waiting in the line for the Magnetic Hill attraction, I had seen the post that the first orientation was at 7 pm that night.

I did the Magnetic Hill drive backwards in neutral thing. Which for $6 is the biggest waste of time and money ever! Then I went to Shediac to get a pic with the giant lobster. Following that, I was headed to Boisetown to get to the centre of NB monument but ran out of time as I really wanted to get to the orientation night.

It was a good-sized crowd and more exciting of a presentation from earlier years that had gotten monotonous from reading the handbook that hasn’t changed over the years. I found out that I was selected to venue captain (again… or “Once a Captain Always a Captain!) It was also here I learned that there was going to be recorded introductions of the sponsorship and the “buy a button” speech. My heart sank a bit as that was one of my favourite parts of Venue Captaining.

After the meeting and email went out that there were still a few shifts open, I took it as an invitation to try something else than captaining so I offered to tend bar for the Big Tease night after the volunteer BBQ. As the night of the big tease came, I was still unsure with my feet always uncomfortable with long-standing periods due to the numb feeling if standing for a long time was even possible. I went to Giant Tiger and bought myself a folding bar stool and brought it with me and that worked very well. I had so much fun that night, and my beer knowledge came in very handy.

The next night was my first Captain shift at the year’s newest venue, the balcony lobby of the Imperial Theatre. When I arrived, I sorted everything out and found out there wasn’t the prerecorded opening on site that night. I was so glad that it gave me the extra motivation to blow the socks off the moderate-sized crowd there that night. I had nailed it and got a great reaction from the crowd. The show was “Denial Is a Wonderful thing”, I spent most of this show dealing with a situation so I didn’t get to hear much of the show. What I did hear was pretty good.

The second show that night had a pretty good size crowd, MIDDLEhood. After this show started, I had overextended myself a bit and needed to get off my feet. I spend most of the show in the stairwell laying on the upper landing listening to the show, while Snapchat and Instagram posting selfies. Occasionally, paying closer attention to the show like the description of a period.

The next day, I was at the BMO theatre for Crippled and Two Minds Into One. Since I had the option, I insisted on doing the pre-show announcement for these shows and again, I got the reaction I was looking for and was so worth it. After the shows, it was the Not-So-Family game night. This was a great night, I started with playing some Hungry Hippos but that got old fast and a game of Cards Against Humanity began and that was beyond fun, as more people joined in it just got better.

Thursday was my shortest day and I only had Crippled to captain. After that, I went to see some shows. The first show was I Want to Come Home. This show was beyond impressive. It was a mix of storytelling type, performance, and crowd interaction. I loved how the projector became a character in the play. After that, I stayed to see Illustrated Lady which was an ingenious version of storytelling and demonstrating how tattooing works.

On Friday, I had my last shift back at the Imperial Theatre for Escape the Ordinary and SMASHES. Both were really good. Bernard started out with a math demonstration that I was following along with seeing how this was too predictable to control the outcome, but then took it to simply, WOW!

On Saturday, I didn’t have any shifts but still had 3 passes to see shows so that is what I did. I didn’t have a lot of time to fit them in so there were so many I wanted to see but couldn’t. I saw A Century of Belly Dance and was really impressed, I didn’t go into it thinking it would be something for me but it was informative and entertaining at the same time. I then saw Two Minds Into One, like most people I love a good magic show. I can usually tell how something’s work but with the big finale I was beyond amazed. The last show I went to see because so many others people said it was a must-see for theatre fans.

I have to agree, it was great watching him show how theatre works in a one-man format, except the tech and an off-stage assistant become part of the storytelling as well, as a point that actors have to rely on the “non-talent” to make them “talent”. After this, I ran to the Imperial to see a non-Fringe show Jay and Silent Bob Get Old. This show was funny and entertaining and lasted about two hours.

After this, I went back to the BMO for the Fringe dance party. This was so much fun, a lot of the performers and Volunteers were all there. I also danced as much as I could but that wasn’t as much as I wished I could.

All in this experience was still fun, emotionally challenging, and really highlighted my limitations.

Buying My First Car

Buying My First Car

As it was becoming clear that I needed to get motivated to go to work. It was also clear that getting up to catch a bus was not really physically possible given my state. I was going to need a car. I had set in my mind from two years earlier that I wanted a Mazda 3. That was going to be my car, but I wanted to test drive others first. Since I was not convinced of my abilities I wanted to take the first round to sit in the cars and then shortlist a few to test drive.

The car buying experience if not the most friendly for those that don’t know exactly what you want. The experience typically goes like this. You enter the dealership, you get greeted by the fastest moving sales guy. Then you blow at least a half hour as he gets your information, then starts suggesting features, and financing options before you even look at a car. Then you only get to look at what the sales guy wants you to look at. Then you realize the car is missing some of your must-haves, then the blow off that the must-have is not that important doesn’t work well anyway or, promises it can be added after-market when it really can’t. Then you find one you kind of like and they never end up telling you what it costs, only payment amounts that leave out a few key things that get added when you close the deal.

My main feature need was I didn’t want leather seats. I also needed an auto-dimming rearview mirror and automatic transmission for physical reasons.

The first stop was Saint John Hyundai, the sales rep was new and made it known that he was not on commission yet and was going to look out for me. He then showed me a Sonata, it was nice. However this is where I learned I had another physical limitation, I couldn’t have a pedal emergency brake.

Then I wanted to look at the Accent but the sales rep insisted on the Elantra first. The Elantra would have worked, but the lip by the door was too deep for my leg brace and I would have to go high-end to get the mirror I wanted. I did get to try the Accent that was more comfortable and my size but he in post talks kept pretending I didn’t and insisted the auto-dimming mirror could be added aftermarket after the company he called said it couldn’t.

The next stop was Port City Kia. This place was more friendly because I was familiar with the staff. I sat in the Forte and it was a great fit and mostly met my needs. I was thinking of a Rio when I did my research but never did sit in one. While they were figuring out numbers I sat in a few of the other ones but they were more car than I needed.

The third stop was Saint John Nissan. The staff was friendly, and the Sentra fit well, but I needed the sports model to get a colour I needed. The Micra was also nice but the saleswoman has no interest in selling it.

Stop four was Dobson Dodge Chrysler. I went in thinking maybe a Dodge Dart. However, they were having a promotion that a Chrysler representative was in town and I only got to see a Chrysler 300 that was, “the only car worth considering”. It didn’t have what I needed and was way outside my budget with other options I had seen.

Stop five was Saint John Toyota. I spent a good amount of time here as I was being shown cars. As the sales guy was distracted, I fell in love with the Toyota Corolla iM, it was blue which I really wanted. It was only missing the mirror and the sales guy insisted it could be put in once again after-market, but he could throw it in. They also started insisting that a lease was a better option as it makes it easier to replace every few years, and are taxed better.

The next day I went and visited more places.

The next stop was Fundy Honda, in this case, I tried the Civic and the Fit but none of them wouldn’t work out.

The Seventh place was Brett’s Buick GMC. None of the cars met my needs or budget and the sales guy I got had to constantly leave to work on other sales, and then got the service guy to come out that shot him down that an auto-dimming mirror couldn’t be added.

Stop eight was Downey Ford, who insisted that I would only like a car if it was white, black, or grey. They also couldn’t get anything in that was blue, even if I wanted to wait.

The ninth and last stop was King Mazda. I basically learned that my dream car didn’t meet my needs as the only one that did was the top end Mazda 3 and that was outside my budget considering my other options.

After the round of viewings, my short list was the Hyundai Elantra, Kia Forte and the Toyota Corolla iM.

At this point, I went back to all three with my friend Tony to re-sit in all 3 of the finalists and it was really then that I decided the Elantra was just not the best fit.

Later that week I went to test drive the cars, starting with the Kia Forte. They had a red one there, and I was very comfortable in it and was comfortable with the feel of the controls. After the test drive, I was confident I had found the car. However, I wanted blue, and I wanted the mid-year update with Apple CarPlay. It took a few weeks for the car to arrive and was not the easiest process to find out for sure when I was arriving but they appeared to do their best at the dealer level.

On the day the car arrived, I went to the dealership to complete the sale. It was at this point that so learned how all the fees work, and all the service and warranty add-ons and what is actually covered and what is not.

I now have my 2017 Kia Forte EX and absolutely love it and am confident that I made the right choice.

The Return to Work

The Return to Work

On my way out of the hospital I was so hurried to get out of there I got my prescription list and that was it. I was gone just after lunch. I probably should have asked questions about the follow-up but didn’t.

When I got home I spent a lot of time watching TV and occasionally taking the bus to town. Having to sit on several cushions was getting to be uncomfortable so I bought a new recliner chair from Wayfair. When the chair arrived I loved it and it made watching tv more comfortable. I did eventually get a call from the doctor for a follow-up EMG. It went as well as poking a needle and giving an electric shock can get. I also received a referral to a plastic surgeon to see if he could fix the Ulnar nerve. Later the next week I had that appointment and an MRI to see what happened to my shoulder.

After another month of doing nothing and clearing out the PVR. I was so bored that I made an appointment with my family doctor and got his permission to go back to work. So 2 days shy of 8 months later I returned to work.

The Path to Freedom

The Path to Freedom

After the Christmas party, I was pumped and the goal wasn’t to just walk but to get out. The next weekend I went to a movie with a friend. The main goal that I needed to go home was to go up my front steps and to transfer onto a shower bench. After lots of practice, I was managing a few steps of various height with the hospital physiotherapist.

The next step was going home for a home visit to see what was needed for me to go home. When I arrived at the house that I hadn’t seen for months, it felt familiar but didn’t seem like home. I couldn’t even see half of it. Waking up the steps into my house was the hard part. My rails were too low to give support.

When I got into the house, I tried sitting on my couch and it was still too low to get up from without help. I also needed a walker still to get around. The walker also didn’t fit well through doors. That night my sister brought me to the Dolan Rd Irving and then went back to the hospital.

The next weekend was my trial overnight. I was really looking forward to it but once home reality kicked in. There was little I could do without help, and I didn’t really have much help. The worst part was at night, my bed was so uncomfortable and I couldn’t get up to go to the bathroom to even pee in the dark. Putting on the ankle brace was hard. The next day I returned to the hospital distressed that the weekend didn’t go that well.

At that point, my hospital release was extended about a month, and I had an idea of what I needed to work on. Unfortunately, being in isolation was impeding the process. It was that week that I ran into infection control checking to see if the sign was on my door while I was having my lunch. They were two very nice ladies. I made it clear to them that the isolation was impending my care and was stupid since I was researching the procedures of other hospitals in dealing with ESBL and that I was probably cured two months earlier.

Later that day, they came back and the Director decided to retest and then maybe decide what could be done. Having no choice I agreed and urinated in a cup and had a swab taken from my but. After two more tests a week apart, the results came back and I was cleared! Since I could solo walk with a walker by this point I did a victory lap.

Up to this point, I had two Physio and one OT session every weekday. The staffing became a bit short and my exercises Physio session was going to be cut. I asked if I could come to the gym and do them solo. (I was motivated at this point.) They agreed so I started doing them myself and then gradually tried doing the harder version that was on the sheet and was excited each time things got better.

Finally, after 5 months and 3 days at the hospital, I was released on March 1st.

The Life of the Party Must Be At The Party

The Life of the Party Must Be At The Party

On the spur of the moment I came up with a wild goal of getting to my work Christmas party on January 21st. I then told my Physio and OT that this was going to be my goal right after the Christmas holiday.

Step 1: The Car Transfer

Up to this point , I was barely able to slide on a varnished board but I gave it my everything to be able to do that. However, in doing that my muscles started to build more rapidly and I was moving on to being able to stand using a two-wheel walker, and walking a little with it with a physiotherapist. We had arranged an afternoon with my step-father that had a higher vehicle to get into to try with Physio to get the okay to go. The day I picked turned out to be a quite warm day for January and in one try I was able to get in and place myself in the sea. I couldn’t get my own seat belt on myself but it looked promising.

Step 2: Arrange tickets

My coworkers were visiting me in the hospital regularly and I got them to arrange to get me a ticket and my parents a ticket as well, and it was to be kept a very tight secret which is almost impossible to do with the closeness of the people I work with.

Step 3: Not arrive naked

Up to this point , I had not needed any clothes so I was just wearing Johnnies and pyjama pants most days. I had to arrange for my sister to bring me clothes. She got me everything I needed. I had also been working for weeks trying to be able to move enough to pull it off.

It was really funny the nurse helping me with the buttons as my fingers were still very week. I was nervous of having to use the bathroom while out.

Step 4: Arrange for my parents to bring me

This should have been the easy part but my anxiety made it the hardest part. Fortunately , they were on board and I arranged for them to be able to go as well, which they enthusiastically agreed to do.

Operation a success!

It then became the night of the party. I arranged to get picked up after dinner as it was the best time to have the nurses get me ready to go out with the limited help I still needed. I was just starting with a walker a bit in therapy, but the most part I was wheelchair bound. With the help of my mother , I made my way down to the waiting car. It was pretty cold and the temperature hit me as I had left the hospital for the first time since September (almost 4 months).

At this point , my tentative release date was just a few weeks away and this was a real challenge to see my progress. We drove around for a bit as I had about 2 hours to kill before the party. So many things had looked different but quite the same. I was so happy to at least be home. If I had stayed in Brampton, or even if I was transferred to rehab at the Stan Cassidy Centre in Fredericton I don’t think I would have been as motivated for this as I was and it was a goal that pushed me forward and gives hope that more was possible.

I waited fashionably late to arrive, almost a half hour after the doors opened. Mainly to have more people there to get a bigger welcoming. Much of what I do is plotted for maximum effect. The ramp was in the back door and the key people in on the secret met me and I transferred out of the car and into the wheelchair and I entered the legion hall.

So many people came up to me to see how I was doing it was incredible! The buffet began and I waited in line. My mother helped me, and everyone tried to help me. I really wanted to try and see what I could do but no one was letting that happen.

Eventually, I did manage to ditch everyone and made a solo run to the buffet. I had lots of trouble with the nachos and squeezing thongs.

I danced as much as I could in my chair and had a great time. I eventually needed to use the washroom and managed on my own. I wheeled up to the urinal and stood up on my own grabbing the pipe for support, and it took everything I had to do it. I really wasn’t ready but my brain was determined that there must be a way. As I left the washroom I found the handicapped washroom that would have been safer and easier. It was too late for that. I danced a lot more, said some goodbyes and left.

I wanted to let go and fly down the ramp but nobody was going to let that happen. I got frustrated that no one was letting me try things myself. When I got back to the hospital, I wanted to wheel myself back to the room but my mother wouldn’t let me do that and we got into an argument again. I was just so frustrated that so was not being considerate as I should have been. I wanted nothing more than to be independent.

I made it back and the nurse helped me back to bed and after some meds, I fell soundly asleep.

The Breathing Machine Experience

The Breathing Machine Experience

Back when I was in ICU, you cannot imagine what it is like to not really know what is real and what is in your head.

When I first had the machines breathing for me, I felt like I was in control of them and that they were supporting me when my brain wanted air until I would lose focus on breathing and then it would kick in. Every function of one’s body has it’s own unique rhythm from heartbeat to a breath of air.

At first when it kicked in the timing was wrong and it was pissing me off royally! Not as much however as the medical professionals asking is I was in pain and not being able to effectively communicate so they gave me good stuff and I would come in and out of consciousness but no one seemed to know and I blacked out again.

After a while, I just gave in and let the machine breath for me. I stopped fighting it and it became less noticeable except I knew I couldn’t breathe as well as before and my air wasn’t right and I tried to just go back to sleep and get the four weeks I thought I was promised over with.

When I became time for me to get out of everything. I would wake up and there would be no one there. I couldn’t talk, but learned that if I tried to fight the machine and breath erratically that it would set off alarms and people would come. Most of the time they seemed pissed off and tried to get me to relax but I desperately needed someone there to try and keep me from drifting back into the fake world of my head. However, no one would stay and for many days I would drift back.

I really am not sure what it was but there came a point where they changed my air and I had to struggle to breathe on my own. It was however that that made me decide I was going to breath myself again, then within days from that about 3-4, it was removed.

Starting Rehab

Starting Rehab

After lunch, on November 23rd I was wheeled down the hall to the next tower. I had escaped the mean nurses and now entered the rehabilitation program floor. I remember the weather was overcast or raining it was dark. This isolation room would be my final prison for the next 3 months. I had remembered being told the ESBL treatments were for a week. I was told within a few days that the isolation was to be permanent due to hospital policies.

The first nurse I saw went through the riot act that made me fear that the poor treatment from the last floor was going to continue. I spent the rest of my night in the room just listening to what I could hear from the hall.

The next day involved being assessed for what I was capable of. It was also more just waiting around doing nothing.

Over the next few weeks, I tried really hard and progressed to sitting up and sliding on a transfer board to a wheelchair with help. It was lots of long nights and days. Typically only a little over an hour of physiotherapy and occupational therapy. I was always excited when the respiratory therapist came four times a day to use this big hand pump thing to keep my lungs expanded.

Sitting in a wheelchair for hours was really hard. My bum would get sore from the pressure on it and it felt weird due to the lack of full feeling. There was one day in December, I made it up to 9 hours in the chair. That day they held a Christmas party and had some good singers.

I was upgraded to a better wheelchair and I started trying to push myself, which at first I could only do a few footsteps in length, but I think it was key to getting my arms stronger. I was eventually able to wheel pretty fast. Since I was in isolation, I was only able to get out with someone gowned up. Considering how busy everyone was, it didn’t happen that much. Partially because of my anxiety I couldn’t bring myself to ask for help.

Just before Christmas, they started me with standing. It hurt a lot using the standing lift, especially when slowly standing. I soon learned that if I stood up myself when almost there it hurt less. After standing a couple of days, I was put in a suspended support and walked a few metres on the first day.

The next time, I considered taking rests but when up I just kept going and walked a good distance, until after Christmas I was able to walk without a standing support and moved on to a two-wheel walker. It was at this time that I came up with the goal of going to my work Christmas party in mid-January, although I had not told anyone yet.