In my last blog about inspirations, I said I wanted to dedicate a blog to my old friend and massive inspiration, Gareth. Gareth went through a incredibly scary period in his life whereby his life was in the balance. To explain further I asked him a number of questions which he kindly answered and now I want to share with you to give you an insight of how amazing this guy is!
TELL ME THE FULL NAME OF THE CONDITION YOU HAD?
Guillain-Barre syndrome (pronounced ghee Ayn bar ray)
GIVE ME A BRIEF DESCRIPTION OF WHAT IT IS.
Guillain-Barre Syndrome (GBS) is an autoimmune disorder whereby the body’s immune system mistakenly attacks and destroys the peripheral nervous system. The initial symptoms are typically changes in sensation or pain along with muscle weakness, beginning in the feet and hands. This often spreads to the legs, arms and upper body with both sides effected. In some instances such as mine, it can result in total paralysis and respiratory failure, requiring mechanical ventilation and treatment in an intensive care unit. The cause of the condition is currently unknown but research has shown that the condition can be triggered by a viral infection, the immune system fights the virus and once destroyed, instead of stopping the immune system continues to fight,targeting the peripheral nervous system.
GBS is a rare and serious condition affecting approximately 1 in 100000 people every year. Globally death occurs in about 7.5% of those affected. Treatment together with supportive care and rehabilition will lead to a good recovery in the majority of cases, however recovery can range from weeks to years with about a third left with permanent weakness or residual effects.
IT MUST HAVE BEEN DIFFICULT BEYOND BELIEF TO WAKE UP AND NOT BE ABLE TO MOVE OR TALK OR INTERACT?
Defiently, it was by far the scariest moment of my life!
I was married to my wife Amanda in August 2014. During the second week of our honeymoon I started to get headaches at night along with a slight numbness and weakness in my hands and feet, we just thought it was either a bit of a cold, tiredness or the effects from the heat in Tenerife. The first week back to work I was feeling really unwell and the symptoms were getting worse so I decided to see my doctor on the Friday. The doctor thought it was a bad flu or viral infection and advised me to give it another few days to see if it would improve. That evening the numbness, weakness and pain were getting worse so I went to the out of hours doctor for a second opinion but they advised the same. By Saturday evening my entire body was aching and I was struggling to walk or stand without help so we decided to go to A&E. I was admitted to the medical assessment unit in the hospital where they could keep me in for observations and tests to determine what was wrong. One of the tests was a spinal tap-biggest needle I’ve ever seen stuck into my back to draw off cerebrospinal fluid. From this test the doctors thought I had viral meningitis and advised that the symptoms would likely get worse before it gets better and bed rest was the answer. I was discharged on the Monday.
As the doctors said,the symptoms were getting worse. Tuesday night was the first time I felt real fear, I was finding it hard to breathe as if someone was sitting on my chest. I remember saying to Amanda not to let me fall asleep as I didn’t think I would wake up again. Wednesday morning I was essentially paralysed from the waist down. We rang the doctor who came to the house. Upon seeing me and making her assessment she said that it wasn’t viral meningitis but most likely GBS. As I was unable to move my legs and already experiencing breathing difficulties she called for an ambulance.
In a&e resus the doctors agreed with the GBS diagnosis and the icu team were brought in to explain the next step and treatment process. I was told that I needed to be put on a mechanical ventilator as a precautionary measure against the respiratory failure for approx 5 days and hopefully by then, with treatment, I would be on the road to recovery. As you can imagine this wasn’t the news that I wanted to hear, and I’ll admit that I was scared…really scared… not just for me, but for Amanda as well. We were only married 3 weeks and this wasn’t part of the plan. The doctors said I would be sedated for roughly 5 days while on life support so not to worry. There was nothing for it then but to get on with it. Sadly things didn’t go to plan…My body didn’t appear to be responding to the first round of treatment. After a couple of days my body experienced respiratory failure and became completely dependent on the ventilator. Since this was going to be longer term I was given a tracheotomy (breathing tubes through the throat) instead of the ventilator through the mouth. This also meant that the level of sedation was also reduced.
I remember bits and pieces during the first couple of days in icu,even while sedated. The main thing I remember at first was the confusion over why I couldn’t move my body. I quickly realised that I was completely paralysed,from head to toes, I couldn’t even blink. My eye lids were frozen in the open position which thankfully meant I wasn’t paralysed in darkness-a small mercy but one I would happily accept nonetheless.
My main frustration was the lack of communication. I don’t think I will ever be able to fully explain to someone the feeling of having your ability to communicate stripped away from you and how difficult it is being fully paralysed and unable to speak because of the very machine that is keeping you alive. Thankfully I was able to move my eyes and my wife decided that they could work out what I wanted to say by asking me a series of closed questions and I would respond by looking up once for yes, and twice for no. Slow,frustrating and limited but it was something at least and far better than nothing!
WHEN I WENT THROUGH CANCER I HAD DAYS WHERE I NEVER THOUGHT THE PAIN WOULD END, DID YOU EVER THINK THAT YOURSELF? WHEN I VISITED YOU I JUST SAW THE LOOK OF DETERMINATION IN YOUR EYES NO MATTER HOW HARD YOUR DAY WAS!
We all think we have experienced the worst pain at some point, just think how many times we say “I’ve never felt pain like it” or “there’s nothing worse than…” I can honestly say the pain throughout my whole body was excruciating and something I could have never imagined or thought possible. Except for my inability to move and speak I would have been thrashing about the place and screaming. I couldn’t do this so I had nothing else to do but persevere.
I think the biggest thing that got me through my whole GBS journey (10 weeks in icu and 3 months of rehab) was the support from my family, friends and my faith in God,
It may sound strange but I knew from the beginning that I would get through this and I would be ok, I just needed to learn patience. I completely rejected the possibility that I could die or I wouldn’t recover from this.
I ONLY THOUGHT I HAD TO START FROM SCRATCH WHEN I FINISHED CHEMO BUT YOU LITERALLY HAD TO. YOU HAD TO LWARN THE BASICS AGAIN, ALL THE THINGS WE TAKE FOR GRANTED! WHAT INSPIRED YOU AND DROVE YOU TO GET YOUR LIFE BACK?
Yeah it was difficult-I had to relearn how to hold a pen to write, hold a glass to drink, eat stand and walk. It’s been a long process.
As I’ve alluded to previously, as well as support from my family and friends, my faith was my determination. I knew that I was going to be ok, there was no question of it in my mind, I just needed to be patient and work hard. Don’t get me wrong, there were some low points and plenty of frustration along the way.
I NEVER TOLD YOU THIS BUT YOUR ONE OF MY INSPIRATIONS AND YOU AMAZED ME IN THE WAY YOU HANDLED SUCH A LIFE THREATENING ILLNESS. YOUR SENSE OF HUMOUR AND STUBBORNNESS TO SUCCEED SHOWED ME WHAT WE CAN ALL BE CAPABLE OF. I JUST WANT TO THANK YOU FOR THAT.
Thanks mate, I honestly don’t know how to respond to that…
Your an inspiration yourself, dealing with and battling cancer at 20, not to mention all you do for friends of the cancer centre.
I’VE ALWAYS SAID THAT CANCER CHANGED ME FOR THE BETTER. NOT EVERYONE UNDERSTANDS THAT COMMENT BUT YOU HAVING GONE THROUGH A POTENTIAL LIFE THREATENING ILLNESS ALSO, CAN YOU SAY YOU’RE THE SAME? HAS IT MADE YOU LIVE YOUR LIFE AND ACHIEVE YOUR GOALS EVEN MORE OR WOULD YOU HAVE DONE ALL THAT ANYWAY?
Yeah I completely agree!
I found my faith again through this illness and learnt a lot about myself along the way.
When I was young I had a relationship with God but I lost this in my late teens through some difficult times. Around a year or two leading up to GBS I started to ask questions about God again and got involved with some church type activities but never made any commitment with God.
Sometimes we need a nudge in the right direction, other times we need a kick… I think GBS was my kick from God.
In a&e resus when I was told the news and what would happen, I decided now was the right time to make that connection with God again and I decided to fully lean on him. It was at that exact moment that I knew I would be fine, I felt a peace or calmness and I knew that I could overcome this and anything that was thrown my way.
Since GBS I have said to people that I wouldn’t change a thing. It brought me to God and I learnt how to be more patient and that I had a strength and determination that I previously didn’t realise. It also made my family closer.
With respect to achieving goals, I think it has definitely made a huge impact on that aspect of my life. It’s made me a more determined person and when I set my mind to something I’ll do everything I can to achieve it. I believe I’m actually fitter now than I’ve been for a long time. I’ve taken up going to the gym and yoga 3-r times a week. My most recent achievement was completing the strabane-Ilford half marathon.
I’m sure there will be plenty more challenges and successes to come in the future, watch this space!!
WHAT IS IN THE PLANS FOR THE FUTURE AND WHAT ADVICE WOULD YOU GIVE TO ANYONE FACING DIFFICULT TIMES?
Never underestimate the power of positivity! In my opinion a positive mental attitude is worth more than any treatment or therapy.
Plans for the future?… Not entirely sure at the minute, just enjoying life with Amanda. In relation to challenges, as I’ve already mentioned I recently completed a half marathon which I’m proud of considering only 2 years ago I had to learn to walk again! Nothing else planned in that sense, especially nothing like what you set yourself! Riding 10000 miles in a year, your a mad man! Going to do the mourne wall this summer, maybe a triathlon Sprint and my dad has mentioned canoeing from portadown to Coleraine, but we’ll see what happens.
MANY THANKS GARETH FOR SHARING YOUR EXPERIENCES WITH ME. YOUR AN INSPIRATION TO MANY AND I WISH YOU ALL THE LUCK IN THE FUTURE!