I have had GBS twice in the last 9 years.
The first bout started on December 10 2009. I went undiagnosed for over a month, but it was finally determined I got GBS from the flu shot. It had been my first flu shot ever, and it was the new H1N1 strain of flu shot I received.
During the next 4 months I was weak, lost mobility of most of my body, and could not even hold my 9 month old baby. I was fortunate though in that I was never found to be ill enough to be hospitalized, and I never lost control of my bodily functions.
I was only ever prescribed a pain killer in week 2, and I had such immediate adverse reactions (lip droop) that I stopped taking it.
I continued to have facial pain whenever I was hugged, or there was pressure put on my face. This has continued to the present date.
I found out that the GBS affected my back muscles by making them "soft" & "squishy" and when I got an epidural for my 2nd child - it was not effective. The anaesthesialogist indicated that this was most likely directly from the GBS. (I had an epidural
with my 1st child with no issues and it was effective).
I was cleared in October 2010 and thought I
was in the clear, until May 3 2015.
was in the clear, until May 3 2015.
On May 3 2015 I started to feel pain in my lower limbs and told my husband that it felt like it did the last time as the GBS in 2009. I went to 3 different ER's - 3 days in a row and was sent home each time with the doctors telling me it would go away,
it was in my head, and I must be going through something emotionally. Thankfully my husband would not give up. He stood by my side and finally I was admitted on May 7 2015 with a diagnosis of potential GBS.
I spent 3 days on a ward in the hospital on pain meds before my body stopped performing basic functions and it was decided I would be moved to ICU. My 2 boys visited me once during this time and my youngest wouldnt even come near the bed because he was
scared. My heart broke.
May 2015 in hospital with my kids (2nd bout)
On May 10th (Mothers Day) I was transferred to ICU and I was given a feeding tube as I could no longer swallow or move my mouth at all.
I spent 12 days in ICU and my husband would not leave my side. I was on a pain med named Diladid that caused me to hallucinate alot, and I know family and friends visited me but I cannot really remember who or when they did.
One of these nights, as I was sleeping, I stopped breathing. The machines started beeping and thankfully my husband was right there and shook me until I started breathing again and woke up. This was scary because a nurse did not arrive until after I had
woken up.
Finally, my breathing was getting a bit stronger so they moved me out of ICU on May 22nd. I continued to be on the pain meds and I requested to be injected in the arm as it was the only part of me that wasnt either completely numb or in extreme pain with
each touch.
I started physio in bed 3x a week. I hated it. It was so painful just to have the bed put into sitting position. It felt like my whole body was on fire. I dreaded these sessions.
Slowly parts of me gained mobility, but the process was so slow! It was strange how the 2nd bout had hit me so much harder than the 1st. It was like polar opposite experiences with the same name GBS.
On June 22nd I was moved out of the hospital and into a transitional medical facility where I waited for space to open in the rehab hospital next door.
June 2015 on a day pass for oldest sons kindergarten grad
The new place was like a retirement home. I was the youngest person there by 40 years at least. It was depressing and I felt so alone. I decided I was not going to stay any longer then I had too.
First I asked to be switched from injection to pill form for my pain meds. I had no idea that the withdrawals I would feel from this change would be so drastic. It hit me hard, and honestly I completely understood how some people get addicted to meds and
cant get off of them. It took over a week to regulate my body around this change.
After the med change, I scheduled my second visit pass and on July 8th I went out to a restaurant to celebrate my brother in laws birthday. It felt so good to be free, but I was tuckered right out after only an hour and fell asleep before I got to say
goodbye to my boys. That night I woke up very disoriented and realized I hadnt said goodbye to them. I started to sob uncontrollably and all rational thinking was gone. The staff had to intervene and provided me with Amitryptaline, a sleeping med, to help
me to calm down and fall asleep again.
The following day I spoke with my husband and we made a decision. I would aim to be home by July 15th. I was able to move myself around via wheelchair, I had taken a few steps with the help of my physiotherapists, and I was able to do transfers regularly
from the bed to my wheelchair, from the chair to the toilet. I knew I could do this. We spoke to the doctors and they agreed to my discharge, with the plan that I would do physio on my own daily and that a referral would be done for me through the local physio
office.
My 3rd day pass was for my youngest sons 4th birthday on July 13th. We spent time at home, and went out for supper. It was the best day during those hard 3 months.
Finally on the 15th my husband and kids picked me up and drove me home. I was never so happy to pull into our driveway! I continued on the meds I had been on before: Dilaudid for pain, Amitryptaline for pain & sleep, and I was started on Gabapentin.
The next few weeks went by in a blur. We hosted a summer camp for our karate students, and had 2 amazing friends come stay with us and help with everything. They were our angels that weekend. We spent time together, I went to doctor appointments, and I did my physio regime daily. What was most frustrating during this time was that the physio referral took 2 months for a therapist to be assigned to my file. I felt like I had been forgotten by the medical system and that I was behind in all of my goals.
When I finally had someone come out it was not what I expected. The exercises were very basic and didnt help me very much. I felt like I was being swept under a rug and that no one cared.
Over the next year I went to numerous doctor appointments to experiment with medication/dosages, and I started attending a rehab facility that was an hour away from home in an attempt to get the help I needed. My prescription for Dilaudid was ended, and
I was switched to Tramadol which has less side effects. Slowly I started to walk on my own, and in October 2015 i started using a walker instead of my wheelchair. I attended twice a week for full days of 3-4 sessions each. I completed clases to strengthen
my hands, arms, and legs, and I met with a psychologist monthly. This continued for approximately a year and a half.
Throughout 2017 & 2018 I have been working towards returning to training in my passion, karate, and to eventually return to work. I continue to be tired all the time, and I nap daily of possible just so I can make it through the day. I have slowly weaned
off the Tramadol and Gabapentin, and remain on Amitryptaline to this date as I still struggle with sleeping. I have vivid dreams and will often have nightmares about being back in the hospital.
GBS Awareness Run in September 2017
GBS Awareness Run in September 2017
As my kids were only 3 & 6 when I got sick, I assumed they would not remember and thought they wouldnt really be affected long term from my GBS. Unfortunately, that is not the case. I have learned to be descriptive when I say im not feeling well, as they
would both assume I would end up sick again every time i said those words. I have become open with both boys about stress and the effects stress has on people, as the doctors believe extreme stress played a factor in my relapse. I have also tried to role model
self care, positivity, and happiness throughout my struggles to show them that they matter to. I am hoping it will all reflect in their overall self care as they grow older themselves.
My family & i in Japan in August 2017
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Not really sure how to end it off - but there it is. My long winded 3 part experience. Thank you for your great idea to spread GBS Awareness!!
Jenny Rybie
Alberta, Canada
