Surviving GBS syndrome: Chapter 4

THERE IS WAR IN MY BODY: Chapter 4


THE ROAD TO RECOVERY

The night nurse sister budged in the ward at 4 am as usual and brought my warm bathing water as usual. It took me about 10 mins to finish bathing then I sat at the chair next to the bed whilst they were making my bed. This was a daily routine with these night nurses but they are very sweet though. I walked with my walking frame to the far end of the corridor where a gym bike was domiciled. It was around 4:45 am I spend about 20 mins there cycling, this was a daily improvement. The meter wasn't reading but I just cycled. I then left the bike then headed back to my Ward which was about 80 metres away. I returned to the bike at 11 am for my second gym session. This time I counted the cycles as I was cycling. In total, I managed to do 550 cycles. This was a great achievement for me. In other circles, they would have popped a bottle of champagne. Later in the evening after visiting hour had closed I went back to the bike again and this time I hit a cool 600 cycles, the strength on the bike was three. On Monday I cycled four times, with an average cycle of 600. I was getting used to it and I was so pumped up like I was high on substances. All my doctors and physiotherapists were impressed by my progress.

There were four of us in the Ward, the nurses always changed patients in our Ward and I was always the constant one. On bed number 4 there was a coloured guy, he was in his 50s He was very sick and experienced shortness of breath. Each time the doctors came to see him they would drain water from him. His lungs were submerged in water. He would cough, and struggle to sleep all night long. All sleeping positions were not comfortable for him. Each time my brother came to visit me the coloured guy would ask him to pray for him as if he knew the end was near. Angel of death hovered around him for a couple of days like pain in the bum. It's not a good feeling seeing a fellow patient suffer but when one is in hospital it's inevitable and almost acceptable. The guy was on oxygen but he would constantly remove it and then the two oxygen pipes would fall on the floor and he wasn't able to pick it up. I would tell him most of the time not to remove it but it fell on deaf ears. I guessed the sickness was getting into his head. I would take my walking frame to his bed and pick up the oxygen masks, it was a struggle for me to help him. I reminded him most of the time that I couldn't walk. He would apologize but never listened. The other fellow patients just gave up on helping him.

 The other guy who was able to walk around on bed four had jaundice but was not even keen on helping the poor guy. So I would take my walking frame and limp to his bed. It was a struggle for me to balance on one hand and pick something on the ground. I had to do it for this guy. I have never been on oxygen but I assumed it had some irritating effects. After he was moved to ICU he, unfortunately, passed on the next day during the visiting hour. May his soul rest in peace.

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Writing is all about capturing one's imagination on paper, ideas just flow like a river and with spontaneity. I am often too lazy to harness this creativity otherwise I would have been a great writer. After my GBS diagnosis, I have become aware of the powers that I do possess. And I also discovered early in my sickness that I should never stress about the things that I don't have control over (PSALMS 46:10). I laughed when I watched a video clip about stress management. The basic message was never to stress as long as you don't have a solution just like the prayer of serenity and I quote, "God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference." This prayer sums it all.


On Monday morning 18 September 2017, my intern doctor came as early as 7 am and told me that I was going home. He took my file and started writing. After about an hour my main doctor budged in and was telling anyone who would listen that he wasn't on call on that day, he never the less asked me a series of questions checking if I was ok. He quickly left the moment he finished his interrogation. I reminded my intern doctor of the doctor's note for my workplace & ENT medication for my throat. He also left as soon as finished writing the discharge summary and my doctor's note. Lindsay from OT entered the Ward immediately after my intern doctor had left. I told her the doctors had discharged me. She had brought some putty-like sticky stuff for testing the strength of my fingers. She asked me to make small balls and put them in some container. It reminded me of my kindergarten days when we used to make shapes and objects from similar kinds of stuff. When she was convinced on this test, she gave me a pen and paper to write. I was shocked by my writing or whatever it was, was worse than my kindergarten one. She told me not to worry and said it was because of lack of enough strength in my hands. She said with enough practice I was gonna be fine and that I should practice my handwriting. Just before she wished me well and speed recovery, I asked for the stress ball. The initial physiotherapy plan was for me to go to a physiotherapy rehabilitation facility after being discharged. I had prepared myself mentally for that, but the major problem was that I was too functional for their liking. I was far better than the cases they deal with daily. I don't even know if I was disappointed or not. I had hoped to go to the physiotherapy rehabilitation centre, for the obvious reasons that there is more progress there than at home. I accepted the challenge and I vowed that when I get home I was gonna work out like a rabid dog.


During my three weeks of detention at the hospital, I didn't sleep as much as expected for a patient. I slept late in the night, or the witching hour daily. I slept that time when witches ride on their broom sticks and make their night rounds. In the hospital time does not move, it seemed like reading time from a dead clock. We would chat with my Ward mates up to around 8 pm then I would read my bible and my action novel. I would read until I get tired. Then engage in my writing mode. I did most of my writing at night, I guess it was because of the peace and tranquillity and the quietness and the night silence. I had one sleeping position I felt comfortable with. It was sleeping on my back facing upwards. One of the most feared situations of my condition was the failure to breathe. There were nights I had panick attacks It would happen when I was praying at night. I would wonder how dare the devil would choose to strike at that time. I would wake up in the middle of the night experiencing shortness of breath. I just dismissed it and told my mind that my mind was playing with my body. I didn't tell my doctors that because I didn't want to be put on oxygen. To me being put on a ventilator meant that my condition was getting worse. I told my mind that it wasn't real and it wasn't happening.it never became real after that instruction to the mind. Surprisingly my body and mind obliged. That is when I realised the true power of the brain. The worst case scenario of my condition is that GBS syndrome affects all autoimmune functions like breathing, eating, peeing or bowl abilities. I was very fortunate I was able to do most of these functions without the help of machines. I didn't use a catheter that meant my engine was operational just in case anyone was wondering.

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Doctors make their rounds from around 7 am to 9 am. Then during the day, they would pop up just like popcorn in the avalanche of their abundance. The hospital has so many doctors from interns, resident doctors and specialists from the private sector. Kayleigh came after Lindsay and we did our usual exercises. She told me to pass through OT department on the second floor to collect a stress ball & then get my next appointment card.
After the collection of medication from the pharmacy, I was discharged then we headed for the exit we passed through Occupational Therapy department as instructed. It was a long walk to the exit. On the exit there were security officers, then my sister asked for a wheelchair for me, all along I was using a walking frame. The security officer brought the wheelchair and I was wheeled off, I had to use a wheelchair because from the exit to the metered taxi waiting area it was steep. Whilst we were waiting for the metered taxi to arrive, I was approached by two hospital porters. They wanted to sell me a wheelchair. I was amazed and disgusted at the same time. This was the hospital property. They worked for the hospital, they were just opportunistic. I didn't know whether to laugh or become angry when they were chanting a tired line saying the hospital refused the wheel chair as a donation. I knew for a fact that wheelchairs were in short supply. I would struggle every day at the thought of visiting the bathroom. It was hard getting a wheelchair in my Ward. I ended up eating a lot of bananas so that I would not visit the bathroom as frequent.


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I called about five people to come to take me home but because it was a Monday the response was the opposite of what I expected. I understood Monday is a working day. My sister and brother in law then organised a metered taxi to take me home. They paid R400 for the journey back home. The driver was in his mid-fifties and was a patient guy. I asked him to pull over at the shopping mall on our way home so that I could get one or two ingredients. My mother, sister and aunt went into the mall whilst I remained in the car. When they came back we then took off. We discussed various topics me, my sister and the driver. There were four of us in the vehicle my mum, aunt (her friend ) my sister and the driver. The driver was Professional, experienced, patient and a good man. He started asking me about how to trust funds work, he told me that his son was involved in an accident ten years ago. And was told by road accident fund people to create a trust fund for his son since the money was due to be disbursed. We arrived home in no time the journey was shortened by our discussions.

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When we got home I was quickly reminded by the empty house that I was a bachelor, a senior bachelor. I was cool with it though. Life as a bachelor sometimes is very funny and hectic, there are very few considerations. It's very easy for one to be swallowed by such kind of life. I don't have a yardstick to compare between married life & single life, but what I know is that if I want to be somewhere or do something, like Nike I just do it. There were only two pots and my sister had to go buy some more pots. She started preparing some food as soon as she got back from the shops, I quickly reminded everyone that I was now hypertensive and that meant less salt and cooking oil. Everyone laughed about it. In the hospital, they fed me a diabetic diet simply because I mentioned to my doctors that my young brother was diabetic. Eating home cooked food was devine. Hospital food wasn't as bad though and had now gotten used to it. It was like I was on a diet. It felt good and normal after a while.


When I was in hospital my form of bathing was wiping. My night nurse would bring me the water bowl around 4 am every day. Except for two days when the shift changed. So when I got home bathing was the only thing my mind was thinking about. After taking a bath I felt refreshed, it was a nice feeling that I had not felt in weeks. I then wondered how on earth some people didn't wanna mix with water.
I never knew that I had a bed as comfortable as it felt the moment I laid on it after a three-week absence. It felt surreal. It was like laying on a bed of roses. The hospital bed is so hard and uncomfortable but that can only be felt after leaving the hospital.
The average patient sleeps three-quarters of the day but I made it my mission to educate fellow patients not to sleep as much as unnecessary, to finish all the food provided, to exercise and not to argue or cause an unnecessary problem with the nurses. This formula worked like magic to me. Soon my fellow Ward mates obliged, that to me was the beginning of healing. Just like seeking the kingdom of God. I don't even know where I got the strength and will, to motivate my fellow friends in the hospital. It worked like magic and they appreciated. I am not a fan of porridge or cereals but I devoured it as my life depended on it.



There were no televisions in hospital, I got used to starring on the blank walls. It became normal living without television or radio, hospital life became very normal life for me. Most patients would sleep pretty much the whole day, I envied them, sleep was just some event for me. I would spend most of my time reading or writing. Sometimes it was all boring but there wasn't much of a choice for me. It was like a prison where most of the rights are taken away. My condition was serious but for some reason, I was able to lighten it so much that the readers think its some minor condition. The condition can't be cured, but progression can be stopped or reversed through Immunoglobulin/Polygam. Worst cases have seen patients being put on ventilators. All autoimmune functions can be affected. My night nurse told me when I was in the hospital that I was going to walk by fire, by force and that hypertension wasn't my disease and I shouldn't identify it as my BP or my SGB syndrome. She told me to refuse these things in Jesus' name. She told me to chant a prayer as I walk with my walking frame. I did all that and it worked miracles.


On 21 September a miracle happened. I woke up my usual 4 am time and did my morning exercises for about 20 minutes then I went back to bed to relax. Breakfast was saved at about 9 am then took my tablets, on hypertension tablets, I take two per day then I capsule for my throat. There are also some tablets that I take two tablets five times a day for my allergic reactions in my mouth. These taste so nice like sweets. Immediately after breakfast I put on my trainers then head to the garage where I normally do my exercises. I believe in God, and I believe that my recovery will be speedy & complete by fire by force. A brain is an amazing machine, I told my brain that I was gonna lift my walking frame then walk to the garage. I lifted one leg after the other whilst I carried my walking frame then I walked to the garage. It wasn't a perfect walk but I DID walk to the garage. I was wobbling like a toddler, it was my first time walking since my admission into hospital. It felt so good, the feeling was everlasting and encouraging. My brother carried my two 3kg dumbbells & the stool I seat on when I workout. I did quite a lot of sets & different lifting. When I was exhausted I walked again back to the house lifting my walking frame. This was my first miracle like what Jesus did on his first miracle, turning water into wine. I generally spend my day working out and exercising the whole day through. I push myself to the limit day in day out. I pushed myself to the breaking point.

On 22 September is diarized in a google calendar. It is the day I left a certain company I worked for in Sandton some time back. Every year September I get a reminder. My daily routine is now pretty much standard. After my morning exercises, I felt better, better than the previous day. My legs are still numb but it felt much better on this day. The legs felt much lighter than it was when I was in the hospital. I felt healing and progress. The past three days I have been walking.

24 September is my young brother's birthday. By this day I could walk around in the house unassisted, by either my walking frame or walking stick. It wasn't the best walk but to me, it was a milestone given that since admission I was incapacitated by GBS syndrome. My recovery was encouraging and once again my brain proved to be a Goliath, to quote Paul .J.Meyer, "Whatever you vividly imagine, ardently desire, sincerely believe, and enthusiastically act upon... must inevitably come to pass!". That was my daily bread, my motivation and pillar of mental strength. Paul J Meyer 's quote is pregnant with inspiration and, motivation. Walking for me became my new found love, it became like a brand new toy to a kid. I fell again on this day I was, home alone walking around. It reminded me of the movie Home Alone. I wasn't bothered that much about the fall, practice makes perfect. My only fear was a fracture. The ship is safe at the harbour but that's not what ships are for and a rough sea always makes a great captain. That has been my philosophy since the arrival of GBS syndrome.

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Comments

  1. Awesome, our God is an awesome God. I remember one business person saying a person must believe in a higher power so that when things get hard you know where to lean on. Those who believe in themselves soon find it hard and quit.

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