Five years ago I was travelling Australia. I had flights booked to Nepal, India and Sri Lanka and had been working hard to save up for this big trip. Two weeks into this trip, alone and on a boat, my toes went numb. Thinking it was surely nothing but an allergic reaction, I kept on partying but as the days went on, my fingers went numb. I started finding it hard to lift my arms up and had to ask strangers to turn off my cabin light for me.
Me on the boat as I was becoming numb…notice me resting my arms on the railings!
We went on a hike to the Whitsunday Islands where there is some of the purest sand in the world, but I couldn’t feel it. I started finding it hard to walk but put it down to the flip flops I was wearing being awkward. That afternoon we snorkelled, but I couldn’t make it back to the boat and had to be rescued…it was hard to climb up the steps and get up onto the boat.
This is me on the Whitsunday Islands – notice my strained smile. I was struggling to walk here and couldn’t feel my hands and feet but was determined to travel!
The next day I called my parents. I was finding it difficult to stand, perhaps I’d hurt my back? My parents gave me the second best piece of advice they’ve ever given me (the first being ‘Never turn down an invite!’)…”Go to the hospital”.
I didn’t want to bother with insurance and pay for an ambulance so I hitch hiked a ride to the nearest hospital, certain after a couple of day’s rest I’d be trekking on. I walked in like a robot, stiff and slow but still happy, until I was rushed straight to a bed. I was asked to sign a form but I couldn’t write, why couldn’t I hold a pen? A doctor came over and checked my vitals and my reflexes, “Do you normally have reflexes?” I answered yes of course, not that it’s something I checked regularly. I had no reflexes anywhere in my body. He said “We’re worried”.
It has been five and half years since I heard those words, and it took me an awful long time to think about that moment without a panicky sick feeling, as if I were back in that room. Because after that I was helicoptered to Townsville’s Captain James Cook Hospital, Australia, alone, scared and with suspected Guillain-Barré Syndrome (GBS).
The picture of me with the helicopter in the background was showing the helicopter that took me to Townsville hospital from Prosperine hospital. I flung my arm up quickly to get this snap.
I was told that I could stop breathing and that this was potentially fatal, and whilst I could make a full recovery, I could expect to get worse first. I don’t remember the phone call to my parents or the tearful call to my boyfriend. What I do remember is being very annoyed at my Dad for booking a flight straight away, why was he wasting his money?! I’d be better in a few days!
When he arrived we cried. A lot. And then I needed the loo. My Dad tried to help me up but my legs collapsed beneath me, and that was the last time I stood up for 6 weeks. I lost all movement from the neck down (they used to call me T-Rex because I could only kind of hold my arms floppily out). I am so very grateful that I was never ventilated, something that happens with GBS.
My Dad and I in my hospital bed. My Dad kept me sane by singing to me and being very silly!
But it was hard. I had MRI’s, CAT scans, two lumber punctures, heart scans, ECG’s, nerve conduction studies and a bone marrow aspiration. My Mum flew out, and together with my Dad we spent each slow day playing scrabble and drinking cold coffee to help in the oppressive heat.
My parents and I about 2 months in, still in hospital in Townsville, Australia.
This is my Dad taking me for a walk. I am wearing a mask because I was neutropenic, meaning my white blood cell count was dangerously low…we still used to sneak out to get some fresh air!
My Mum and Dad – this was my first hospital outing and the first time I took a picture.
I was in the gym from 9-5pm with a fantastic team of physios and occupational therapists. The first time I stood, with three physios holding on to me, I let out a triumphant yell before collapsing back down; standing was painful!
After a few months of learning to walk. It was a happy day when I made it from the gym to my hospital room!
I was in agony. My hands and fee burning from never ending nerve pain and what felt like thick swollen fingers. Excruciating pain in my back from lying still and not being able to shift a muscle left me in constant tears and a lot of medication. Not being independent in the toilet, in the shower, eating (it took a long time to pick up and eat a grape!) and not being on the adventure of my life with my friends left me utterly depressed.
Me using the wooden peg board (the first time I tried I couldn’t get a single peg in a single hole!)
I was flown back to England with some wonderful nurses after 3 months in hospital. The NHS were, and continue to be, outstanding, providing me with physio, a wheelchair and everything I needed the day I returned. They also provided me with Cognitive Behavioural Therapy (CBT). I was suffering from Post-Traumatic Stress Disorder (PTSD), and despite physically recovering I was emotionally terrified of it returning and of what would happen in the future.
Three wonderful Norwegian nurses who helped me every single day.
My lovely physios with my on my last day!
The first time I crossed my legs was a happy day!
They don’t know what caused my GBS. I had a rabies vaccination two weeks before I got ill, had been swimming in the rainforest and been up to all sorts, but not sick. Normally GBS is caused by a virus. I was 23 years old when I became ill, and I am now 28. I’ve lived in Canada for three years, hiked mountains, worked as a dog walker and lived an active lifestyle, but it took a long time to do these things. I would say it took a year before the fatigue and nerve pain faded, and another year before I felt comfortable talking about my experience and active enough to not be utterly exhausted at the end of the day.
Me, aged 25 midway through a big hike in Squamish, Canada.
Me in Canada, aged 27.
This is me now in very windy Edinburgh!
I don’t believe ‘everything happens for a reason’. But I do believe you can make your experiences, bad or good, worthwhile. Naturally, after over 5 years I still grumble about everyday things; I am a human. We can go through extreme traumas, grief, illness but we persevere. Since I got ill, my boyfriend’s Mum died of cancer, my Dad has had many operations on his ankles, my Mum has got cancer and is going through chemo, I’ve recently had a third operation on my knee and my brother and sister have ulcerative colitis which they deal with daily. But is it my identity now? No. It is something awful that happened and I am stronger for it.
To those of you suffering with GBS now or have loved ones struggling here are my tips. Wash your hands and feet with gentle exfoliator to have a brief relief from that burning pain. Rest – do things slowly with many breaks. Laugh. When I couldn’t put a straw in a carton of juice my parents ripped the piss out of me. You must laugh. Write or get someone to write your progress. One day I couldn’t turn on a light switch, the next day I could. Celebrate the small victories. Accept sadness. Yes you will get better, but it is a shit thing to go through and it’s okay to feel terrible and get help.
I wrote a blog as soon as I could use a finger on my iPad. There are moments I would’ve forgotten without it, and it helped me track my progress. Here is the link http://tarshcat.blogspot.co.uk/ (I’m afraid I find it a little cringe in places now!)
My Instagram is tarshaporterp – Please contact me any time you need to talk or support or advice.
Thank you for reading.
