The Faces of Guillain Barré & CIDP 2018: Day 2-Tarsha #69

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.

The Faces of Guillain Barre 2017: Day 17- Hayley

On 26^th April 2010 my life as I knew it changed forever. My whole life evolved around sports, I was about to embark on a trip of a life time to help underprivileged children in Uganda, Africa. I was going out there to teach football. Through coaching soccer I could have given the children the chance to excel and learn knew life experiences through playing football. I had to have the yellow fever vaccination to be able to enter the country. 

The next day I awoke with breathing difficulties and weakness in all four of my limbs. As the day progressed my symptoms were getting worse and my friend made me go to A&E with her (my parents were on holiday). I agreed to go having no idea of what was about to follow.

I had a battery of tests and the doctors thought I had swine flu. I remember having tubes coming from everywhere; the arterial line coming out of my neck was the most painful. The weakness had spread to the whole of my body from the neck down. I was suffering badly from pins and needles and my eyes were extremely sensitive to light. I wore sunglasses to help this. The neuro consultant was not happy with how I was progressing. My breathing deteriorated and I was admitted to the intensive care unit and put on a ventilator. My weakness soon turned into paralysis. I was completely paralysed from the neck down. I couldn’t move anything not even slightly. I remember at not being able to itch and itch and get my eye out of my eyes. I hated this and I was in so much pain. I had many more tests including MRI and CT scans, nerve conduction tests, many lumbar and blood tests everyday. I was then diagnosed with Guillain Barre Syndrome (GBS).

I don’t really remember much of the next few months. I was in and out of ICU barely making no improvement whatsoever. I was receiving physiotherapy for my body and chest. My mum would also give me reflexology. I was so scared, I didn’t know what was going on neither did anyone around me. I hated being in hospital. I was in a huge amount of pain. I dreaded the time of day when the nurses washed and hoisted me. Any movement and touch was so very painful. My nerve endings were on fire. Imagine you can only feel intense pain coming from all over your body but cant move a single thing.

I started to make slight improvements starting with my breathing. I eventually came out of HDU and ICU and onto a general ward. This was scary because whilst in HDU and ICU I was nursed 1:1 so if something went wrong the nurses and doctors were onto it quickly. But on a general ward your just kind of left. Not long after being on the general ward I was moved to a Neurological Rehabilitation Unit. I received vital support from the whole therapy and nursing team. This included physiotherapy, occupational therapy, speech and language therapy and neurological psychology. But, things went downhill and I was moved back to a general ward for more intense nursing care. This was a terrible time and I was stuck in a bed with no stimulation whatsoever. I remember crying uncontrollably. I just wanted to move. I wanted to be on the floor, this felt more normal than being lay in bed and sat in a wheelchair.

I then had the most horrendous news anybody could hear. My beautiful best friend had died. She, with her sister were both hit by a man on a motorbike. Sue died within the next few days. Thankfully Julia was ‘okay’ (as ok as you can be when you’ve just had your sister die). I couldn’t cry, I felt numb.

It was at this point in my recovery I saw all the cards letters and presents from my family and friends. Each card contributed to the increase in my shattered confidence. I was hit by a huge over whelming feeling of guilt. I was horribly aware of all the worry and pain I had caused my family and friends. I spent long periods of time by myself which just allowed my thoughts and feelings to take me prisoner.

The nurses had to do everything for me. Wash, dress, feed me and put me in those lovely pink nighties!! I had not been outside for months and months, the first time I went outside I was gripped by paranoia and I was scared. I did have a lovely time though, just being in the fresh air.

Over the next 2-3 years I was starting to recover some movement. I could now cheat in OT when learning how to brush my teeth. I would move my head forward instead of bringing my arm/hand to my mouth. The same when brushing my hair and using a fork. My physio used to get on my nerves, head up, back straight, boobs out, knees straight, ankle flat oh and stick your tongue in. I loved hydrotherapy though, it was the highlight of my week. On land I could barely weight bare, but in water I could walk freely. It felt amazing. 

My friends did some different funding raising including a 24 hour bike ride and the Manchester 10K run. In early 2014 I did a walkathon. Previously I had managed to do 7 steps, but on the day of the walkathon I was determined to do 10 steps, and I did J

I raised a lot of money for the GBS charity (GAIN).   

Whilst in rehab my parents told me that they had separated and were getting a divorce. I didn’t take this very well, I blamed myself.    

I had lots of support from people but on the inside I was really suffering. There was so much positivity coming from other people but inside me I felt empty and hopeless. I was suffering from depression and was on a downwards spiral. I had a psychiatrist come to see me and he wanted me admitted to his ward, so this is what happened. This was the lowest time of my life. Days turned into weeks, and I still felt so hopeless. I would spend all day in bed which is kind of ironic because when I wasn’t able to get myself in and out of bed all I wanted to do was not be in bed.

I had a lot of support from the GBS charity called GAIN and also the GAIN group on facebook which is full of individuals who have experienced or cared for people with GBS and other associated Inflammatory Neuropathies. These people just ‘got it’.

After a huge fight on her hands from my mum I finally got the funding to move back to rehab. Mum had had meetings with MPs, Treasures and many more people to get my funding sorted. If a person didn’t have someone to fight there corner for them it must be terrible. I am very lucky to have such fabulous family and friends who fight for me. I went to rehab in Wales for 2 years and on the 3/3/16 I finally got discharged and was able to move into my own house living completely independently after nearly 6 years of being in hospital.

I was so happy to help my nan celebrate her 80^th birthday in New York. I have managed to play a little bit of hockey again for a couple of minutes at a time. I’ve tried trampolining but failed miserably. I now plan to take up archery, seems safer, well for me, don’t know about people around me. I go to the gym and have a personal trainer. I also go swimming and to pilates. I am doing the colour run in Manchester on the 1^st July. I saw this advertised in my first year in hospital and I said to myself I have to do that when I can walk again.

I still have a lot of pain especially in my back which limits my ability to walk, I have to walk with crutches and I have permanent nerve damage and I am still on a lot of medication but hey I’ll take that seeing a few years ago I thought I would never walk again – and yes one doctor did say he thought it was very unlikely that I’d ever walk and live a independent life. My weight doubled whilst I was in hospital due to all the medications and the inability to move. But now a year after being out of hospital I have lost 4 ½ stone, which makes me very happy.

I have set backs both physically and mentally but with the support of my amazing family and friends I get through them, and will continue to do so.

After living with GBS for nearly 7 years my life is now heading in a completely different path. I can no longer do sports, but who knows maybe in the future I’ll be able to do it again. I currently volunteer at 2 children’s charities who support kids with learning and physical disabilities and I also volunteer at a special school. I absolutely love it and couldn’t think of a better way to spend my days. On my journey I have met some incredible people who know play a vital role in my life. I would not have met these people or be on my altered path in life if it wasn’t for GBS. So I am grateful to GBS for that. It has made me into the person I am today.   

I am going to spend the rest of this year volunteering and gaining as much experience as possible with hopefully starting paid work when my body is ready to. I am taking things slowly as I still tire very quickly.

I decided that on my GBS anniversary every year I am going to do one of the things on my bucket list. This year it is to use a pottery wheel to make something. But my main goal, within 5 years from now is to go on the Inka Trail in Peru with my mum. We made this a deal when I was in my early days in hospital.   

We go through these challenges we face to remind us of how strong we really are. I’ve learnt that life is so very short and that things can change in an instant. So you need to get out and do the things you want to do and live your life to the fullest NOW, and ENJOY it. We all have this strength inside of us that we don’t know we have until we have to use it.


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Here is a link to a video Hayley put together recently.

https://youtu.be/0SgeRUoaZFY