Bite Me

Four months ago, my boyfriend Tom and I moved to Vancouver, Canada. We live with his brother Joe and Joe's girlfriend Kat, and Kat's cat, Sooty. In the flat above live his parents, and in the backyard lives our growing vegetable patch.

When I moved to New Zealand I was 20, brimming with life and ready to do as many adrenaline rushing extreme sports as possible. I broke up with my ex, partied hard, lived in a hostel, moved into a flat, sky dived, went caving, pot holing, jumped off Auckland's Sky Tower, white water rafted, hiked, skinny dipped and generally did as much as I possibly could before I returned home. I made some wonderful friends and often look back at that time with great fondness and laughter; everything was 'Sweet as'.

When I returned home I spent a year wanting to get away again, and despite being in a wonderful relationship, I was angsty and ready to travel again. I hated my job and I felt trapped. So that's when Charli suggested I move to Australia to live with her, her parents and her young twin siblings. I leapt at the opportunity and before I knew it I was living in Mandurah on the West coast of Aus, south of Perth.

This was ultimately a very different experience. I wanted to enjoy my time in Australia, but I was also working full time as a waitress and living with my friends family, and I wanted to save for a big trip. Mandurah was beautiful, and whilst Charli and I had a lot of fun together, I was bored with the work and too anxious to be on the road again. Still, we booked our flights to Nepal, India and Sri Lanka and I was preparing for a short five weeks on Australia's East coast on my own, and then back to England for a few weeks before leaving to do Base Camp Everest and travel with Charli and Sophie to the one place I'd wanted to visit for a long, long time. I was desperate to go somewhere not Westernised.

During this preparation, I decided that I was going to have a Rabies and Cholera vaccination. Despite being very expensive, I was sure it would be worth it. All it would take would be one nip off a rabid dog and that would be that, so I thought I might as well be extra cautious, it wasn't like it would do any harm...

Two weeks after my third and final rabies injection I got Guillain-Barré Syndrome. Nearly two years ago now and I've read a lot to do with immunisations and GBS, with some people getting it after something as small as a flu jab. There is a lot of controversy within this subject, and my Neuro doctors were pretty sure that my immunisations were nothing to do with my GBS. But it leaves the question for future...should I ever get these vaccinations again should I need them? If I were to have kids, would I want them to have the MMR jab etc? Two weeks ago, I was faced with a choice.

I started a new job dog walking. Sounds great right? I get my own van and I basically go out and walk dogs off leash in the morning (six dogs off leash can be pretty crazy!) and private walks in the afternoon. Well, as I was training I had a couple of pretty nervous dogs who were reactive to new people, and one particularly nervous dog was called Baron.

Laura, the girl training me, went in to get Baron a few weeks ago, and by the end of the walk I was holding his leash, giving him treats out of my hand and he was letting me stroke him. When we got back to his apartment, I offered to take off his collar, but alas as I bent down to take it off, Baron freaked out and bit my face and wrist.

It was very sudden and I remember Laura just shouting at Baron and getting me through the door as I began to process what happened and started saying 'He bit me, he just bit me' and I felt the warm blood trickle down my wrist and my face starting to swell. Laura was amazing and had me in the emergency room within ten minutes as she comforted and assured me that my face was okay and it was all fine. I couldn't believe it, there I was back in hospital in another country and of course, I couldn't get hold of Tom or anyone.

After being told that the fee to even just see the doctor was $955 I felt a deep overwhelming sadness for the people of the world not lucky enough to have an NHS or health insurance with their job. What on earth could you do in that situation? Lucky for me I knew that I was covered as this was a work accident, and as Laura left at my insistence, I sat in a hospital waiting room feeling incredibly sorry for myself.

After an hour I was told to sit in a room and wait for a doctor, and as I looked around at all the hospital equipment I had my first panic attack in a long while. Overwhelmed and alone with all the old flashbacks pounding my mind, I started to practise my breathing exercises that I had learnt in therapy. I kept telling myself that I'd learnt to walk again, I could deal with a small dog bite for goodness sake. As I felt myself begin to calm down Tom showed up just in time for the doctor to start injecting the four deep puncture wounds in my wrist, numbing it so he could have a good root around to check nothing was stuck in them. This was incredibly painful but I kept just repeating 'Not as bad as a lumber puncture, not as bad as a lumbar puncture' and then my wrist was completely numb, bandaged up and a black eye began forming around my right cheek. Then I was of course advised I would need a tetanus shot.

I cannot describe the fear of this decision. My doctor assured me that this was not a 'live' vaccination as such, unlike something like the rabies vaccine, but obviously it had to be my choice whether of not to get it. I decided that the chances of this causing a GBS relapse was so slim that I would get the shot, and then consequently spent two weeks worrying about every tingle and every nerve sensation.

But it was fine. Evidence keeps showing me that just because I get the sniffles sometimes, or need a jab, it doesn't mean that I will relapse. This fear ebbs away as each month passes; nearly two years since I heard those words 'We're worried'.

And now I'm in Vancouver. I have blue hair. I walk dogs. I live with my wonderful boyfriend. Of course I've visited the hospital here already, would it be travelling for me if I didn't?! 

With all the fear and worry about life that constantly bears down on us, and of all the things we have to deal with each day, it can feel like death and disease is so inevitable and so constantly present. 

But in the great words of Jeff Goldblum...'Life, uh uh, finds a way'.

 

Mindfulness

I am very pleased to say that after five months of hard work, I have finished Cognitive Behavioural Therapy. Obviously there are many tricky things one has to deal with after finishing such an intense course, such as not being able to rant to a hot (sorry Tom) therapist for an hour each week and no longer getting a bit of a lay in before work.

 

It’s strange when someone gets to know you more intimately than most people you’ve known your whole life, and yet you know nothing about them. I learnt, in my last session, that my therapist had got into meditation as a way to deal with severe back pain that could no longer be controlled with medication. He would meditate as a way to accept the pain he was in, and eventually worked his way into becoming a therapist (the details of which I don’t know).

 

What I learnt is that meditation is for everyone. It's not a cliche for hippies or yogi’s or people wanting to 'connect to their spiritual side'. As an atheist this was certainly not what I was looking for. Known as ‘Mindfulness Meditation’ I learnt how to be still, comfortable with breathing and just sitting down. I’m not utilising this to its fullest, and I should really be doing at least 10 minutes a day of quiet meditation, but I do find it useful in many day to day situations.

 

Say you’re at work and your boss comes over and tells you to do something completely menial in a very condescending way. This can easily get ones blood boiling. I will just pop to the loo for a bit, sit with my hands on my lap and slowly count my breath. At first you just notice how you breathe, don’t try and control it. Being patient and kind to yourself is very important, so when your mind wanders back to your boss being a wanker, just allow it to happen and bring your thoughts back to your breath.

 

Time and again you will notice that your mind wanders and it’s good to notice why your thinking about what you’re thinking about and how you can learn to bring focus back. At first I would get so frustrated, as my CBT 'homework' was to listen to a medative CD for an hour and listen to a woman with a calm voice tell me to think about my left leg 'with kindness and no judgement'. At first this was infuriating! I wanted to tell the woman to fuck off and that I'll just go back to watching Buffy in my pants. But inevitably each day I did it, I felt calmer and more patient; don't get me wrong, it was still hard, but I felt like I wasn't so angry. In a society where we are more and more connected it is important to sometimes just be.

 

There has recently been tons of stuff on mindfulness this year already, just have a search in Google to see what I mean. I read a story about a woman who suffered from extreme anxiety until she was an adult. Then she got married and had kids and life continued and she felt better; until she was in a major car accident. She could not stop thinking about what might happen and what could happen, and it wasn’t until she was too scared to get on an escalator that she knew she needed help. She hated CBT. She hated meditation, she hated being quiet. She was bored, anxious and restless. But she stuck with it and it changed her life. That's certainly the main thing I've learnt these last few years.

 

Stick with it. If I hadn’t stuck to trying to move my arms every single day, I wouldn’t have ever washed my own hair again. If I hadn’t tried to roll over in bed I would’ve been stuck on my back like a turtle. If I hadn’t tried hard every week at therapy and every day in-between, I would still feel depressed and anxious.

 

I’m doing a 10k run in March. I couldn’t run 1k a month ago, and now I’m on 3.5k. If I don’t keep trying, I won’t be able to do it. It's the most obvious, simple thing in the world that we get sick of hearing. But only because it's true.

 

Practise makes perfect.

 

One Year

One year since I left the hospital to be flown home from Australia.

What an incredibly shit year it has been in many respects.

The recovery from walking to running to full time work went by month by month, and each day I felt, physically at least, normal. I landed myself an easy admin job for a gas company that mainly involves looking busy and really just reading the Guardian and doing online shopping. I ride to work every day (mostly) and suddenly it's November again.

But even though externally I look exactly as I did a year before (a bit chunkier, a few re-established piercings and a fringe on its way out), I don't feel the same. I realised in February that the way I was feeling wasn't good. I wasn't elated that I was getting better. I wasn't living every day full of joy like I felt people expected me too. I was depressed.

I went to the doctors and filled out a questionnaire which led me onto the waiting list for Time to Talk. TtT is a government scheme to help people with mental health issues, and despite a long waiting list (nearly five months), I finally got to see someone to talk to. My first session left me feeling empty. My therapist felt that I was likely to be suffering from Post Traumatic Stress Disorder.

PTSD? I, like I'm sure many others do, relate this to the truamas of war. How could my experience of GBS create such a horrific condition? But the flashbacks, the anxiety, the fear and everything else fitted right in. Often, being alone and in transport somewhere my mind would take me back to the moment I first went into hospital, all that time ago, and it felt like I was back in that hospital bed staring up at the doctor telling me 'We're worried'. Sometimes these moments would be fleeting and the next moment I knew that I was on a train to London listening to Laura Marling and off to see my sister. Other times I would be lost in these terrible memories for what felt like hours.

I would find myself depending on people more and more. With the arrival of my boyfriend back from Canada in August I finally felt I had someone to take care of me, a character trait I never had before. When my Dad had both his ankle surgeries and when my Mum broke her hip, I was again and again confronted with visiting hospitals and I felt like I couldn't deal with these reminders. 

My closest friends understand. Others don't. I feel like, at 24, this is definitely a transitionary period where you begin to discover the people you love and the people that you no longer can relate to. A while back we all went to a nightclub that we used to visit often, and everyone could laugh and ironically dance. I could enjoy myself for a bit, but then I just felt so incredibly sad I had to leave. I feel so far apart from these friends, who now have their careers and their plans to move to London. Maybe it's jealously; they are where they feel they ought to be at 24, or at least from my perspective that's how it feels. I feel like I've lost a year of my life. I'd already lost a year having knee surgery aged 19. Was this the way to look at it, lost years? 

Not that their hasn't been some wonderful moments this year. Doing the 5km 'Race for Life' with my Mum and some friends was a great feeling. Tom coming home and us living together and watching Buffy the Vampire Slayer and going to shows and cooking and all those lovely moments. I went to Italy with friends for over two weeks, travelling from North to South whilst drinking red wine every day and eating delicious food. But even this...how can I explain pure exhaustion? It took my at least two weeks to recover from this trip. People think that the fatigue that comes with GBS or any kind of chronic fatigue syndrome is really just someone who is a bit tired. I know, because I used to think that. I never knew tiredness until this year. I can keep going and going and going and then I will just cry and cry with utter exhaustion. My hands and feet buzz, always a reminder of the past and the possible future.

I used to get excited about the future. I'm planning to go to Canada in April for a year or so. But it terrifies me. Now, I don't get as excited about the adventures I may have. I get scared. What if I get ill again? What if something happens to my family at home? What if Tom gets ill? What is next?

Is it purely getting older that makes people feel this way? The innocence of childhood gone, the teenage years a fond memory, and then fear? Before I would've, and indeed nearly, travelled to dangerous parts of the world, places I would have gone alone with little anxiety. Now? The thought of travelling alone to London makes me breathe a little faster. If Tom wasn't going to be in Canada with me, would I go? 

But my therapy helps. I'm having Cognitive Behavioural Therapy and next week will be my 15th session. I get homework; mediate every day or write down how I feel or breathe this way or think about this another way. There are many things we talk about, not just the GBS.

And it must be helping. The first time this year I have finally been able to sit down and finish a book. I allow myself to think about the future as I used to. I have many, many wonderful moments with my family, my friends and my boyfriend. 

But to those of you reading this who have been ill and feel...I dunno, I kind of sadness even though your better, don't be afraid to seek help. Don't feel like the world is more dangerous.

Because really? It's not any more different than last year. 

Running Up the Stairs

'Where's my helmet?! My fluorescent jacket?! Gah, I'm gonna be late!'

I run around my house, looking for daily essentials before my ride to work. I leap up the stairs, brush my teeth and bound out the door to get on my bike to cycle the 25 minutes it takes to get to work. I work eight hours and ride home. I get in, sometimes I cook, I watch a show, read a book, have a glass of wine maybe, and then I sleep.

At the weekends I go out. I dance, I drink, I cycle, I see friends, I walk, I eat.

As you know, nine months ago, I couldn't roll over in bed. I couldn't eat a grape. I couldn't play Halo. Let alone walk. Guillain-Barré struck me down and I thought that was that.

It's a weird thing to look back on. I wasn't going to write another blog, feeling that my journey with GBS had mostly come to an end. Fifteen thousand blog views, emotional Facebook updates and six months later, I was feeling pretty alright. But it doesn't really work like that. It's something I think about every single day. I could be on the train listening to music, when I suddenly remember being told GBS is potentially fatal. I could be laughing with friends about nothing at all and my feet will start to buzz gently under my socks. I could be shopping in town and I'd flashback to being in hospital saying 'I just want to do something normal like go to the mall'.

My friends look back on their last year; they talk about the travels they've been on, the people they've met, the new jobs they now have. They can move on and occasionally think 'Shit, what happened to Tarsha was mental' when they see someone in a wheelchair. I find it hard to look back. The new jobs I've started, the explanation I give about GBS, the shock on people's faces and then the worst bit...the admiration and the 'You've come so far'. I'm of course not angry with these people, I'd be the same in their shoes. But many people just don't really get it.

The expression that I hate the most, that I utterly despise, is 'Everything happens for a reason'. The most patronising expression for those lucky people who haven't been through shit. I hear 'Oh you must appreciate everything SO much now' and even, unbelievably, 'Wow, like, I know what you've been through must've been pretty awful and everything...but you know, it's kinda cool that you've had that, like, life experience, you know?'

It is not cool. It is not an 'experience'. It is a process of pain, endurance and misery. I don't know what I've got out of it. I read about people who had GBS who have run marathons, climbed mountains or have had kids and talk about how they are stronger because of what happened to them. I am extremely happy for these people; it is not everything happening for a reason, but it is because they are people who have been determined to make something good out of an awful 'experience'.

Me? I'm taking it slow. I'm planning a holiday to Italy with my best friends, a festival and hopefully, eventually, a trip to Canada to be with my incredible boyfriend. Every day it is hard to remember. But things get easier, as they always do with time.

For now, I still try to remind myself of the small things that really do matter, and I find myself smiling a bit more. And really and truly, right now?

I'm just happy I can run up the stairs.

Living

An ambulance picked me up from Heathrow Airport and we started the journey home. It was grey, cold and raining, typical England. I said goodbye to both my nurses who flew me home, and I couldn't have asked for better care. I would recommend Sainsbury's travel insurance to anyone, they were incredible; the whole flight home my Mum and I didn't have to worry about anything. I was in Business Class so I could lie down, and the nurses worked in shifts to check my blood pressure and help me walk to the plane toilets etc. They were also such lovely, kind women, and my nurse Henry still texts my Mum to see how I'm doing (even after getting married and having all that jazz to deal with!)

Seeing my brother and sister was obviously a very emotional affair, and adding to the emotion was the fact that I wasn't going to a hospital, but straight home. I was worried about getting up and down the stairs to get to the toilet, not having a wheelchair to use and being stuck inside. I needn't have worried.

The NHS were, and continue to be, outstanding. I had a wheelchair delivered that first day, and over the week I was visited by the Neuro team of occupational therapists and physio's. A programme was set up immediately and I was assessed at home to check that I was ready to be out of hospital. It was strange how weird it was that...well, it wasn't really weird. I thought I would really struggle, but it was kinda normal straight away.

I had a perching stool delivered, and I must say this was so very useful. The best OT is cooking, but to stand up and cook was exhausting! With my stool I could perch as I stirred food or chopped up an onion, and to anyone reading this who is in recovery I really recommend you trying to get one of these.

It's now over four months since I got ill, and I think this will be one of my last blog entries. Guillain-Barré Syndrome is a nasty, horrible illness and I wouldn't wish it upon anyone. It has turned my life upside down and been a hell of a journey. I go to the gym twice a week, and I can jog for 8 minutes now and do 15 minutes on the bike, along with weights and stretches. I go to see my physiotherapist at the hospital once a week, although I no longer see my OT's.

I go to town, I shop, I dance, I cook, I walk, I volunteer, I do yoga. If you are suffering with GBS, please hear me - you will get better! Your hands will work again! You just have to work every single day and stretch and exercise, it is the only way you will get better.

I am going to start looking for a part time job, as I've been advised to wait a few more months until I can go full time. I still suffer from fatigue and depression (why me?). Some days I can hardly get out of bed and everything is a chore. But there are also days when I get up, go to the gym, see my friends, stay out until the early hours drinking and living and that's great.

I've been one of the lucky ones. This week I realised I could feel my fingers, really feel them. I still get some odd nerve pain here and there (especially in the cold), but generally it's okay. I've had an incredibly supportive family and amazing friends. Two of my friends came to see me in Australia in hospital, how wonderful is that? My whole family, especially my parents, couldn't have been more amazing, and I feel I am forever in their debt for everything they have done for me (which is why I'm cooking and baking all the time...I am thanking you all in food!) My boyfriend has been simply awesome, and considering he lives in Canada the support he has shown me has just been...magnificent. (Although when he came back he thrashed me at Thumb Wars...I blame the GBS!)

I hope this blog has been helpful, especially to those suffering or those who know people with GBS. There are only so many days you can be positive, there is only so much pain and exhaustion you can deal with. But listen to those around you who support you. Embrace the hard days with the good.

And if you find some days just too much...have a cheeky glass of vino and have a dance!

Home

Week nine and I was told that the next Monday, I was flying home.

Ecstatic isn't the word. I can't describe it, because I was so happy and yet so terrified, a bizarre combination. English hospitals were one thing to worry about, and I couldn't help but worry all week that something was going to go wrong. That they'd do a blood test each day and one day my neutrophils would be so low they wouldn't let me fly, or my legs would stop working again, or I would get sick, or or or a million different scenarios.

It was a good week though. I was finally independent in the shower! I remember the luxurious feeling of my first stand up shower and washing my hair. It was a draining task, and afterwards I would sit and rest for 5-10 minutes to recover. Then I would dress myself, walking around my bed or bending over cautiously to get out my clothes for the day. I'd been moved back into a ward with four other women, and they'd watch me slowly wobble around with encouragement and praise. I still couldn't get my bloody sports bra on though! That was the one thing that I couldn't do until a few weeks after getting home, and now it's easy as pie.

I could do 48 stair steps in a row with my Physio, no longer holding on as I bravely met each step with a cautious foot. By Thursday that week I could even stand on one leg for around 5 seconds. All this really pleased me, because it meant that I wouldn't have to wear a catheter for the flight, something I had been dreading. I could walk, turn and sit on the airplane toilets, hazaar!

The nerve pain had settled to a quiet buzz, with often only my hands and feet tingling gently in the evenings. But I was incredibly exhausted. Walking around independently everywhere, eating meals in the dining room with everyone else, showering, dressing and exercising meant that by the afternoon I was knackered. I cried to my parents quite a lot that week, out of anxiety and fatigue. We were all on edge.

It's funny to look back on all this. As I type this, the 1st February 2013, over four months since diagnosis, I am about to dash off to the doctors and then to town. Yesterday I went into a hairdressers alone to get my hair done. These small things that I am so, so grateful for. When I shower now, I try and appreciate the ease of washing my hair. As I walk around town, I look for disabled access and picture how hard it would be in a wheelchair. I try and enjoy the English grey compared to the stifling Townsville heat.

But it's not easy. I am still so weak, so tired all the time. I often get people say 'Wow, you're better now!' But I'm not. I still have a long way to do.

But I new I still had a long road ahead on that Monday I got on the plane. My Dad had flown home two days before, and it was me, my Mum and a beautiful nurse from my insurance company. We were flying business class so I could lie down in the flight.

My Mum took her first drink on the plane, a glass of champagne. My nurse and I lifted our orange juices. We toasted...'To going home'.

Waiting

'Chronic idiopathic neutropenia has never sounded so good!'

This was my Facebook status update on week eight and I was genuinely so pleased. Once all the bone marrow results had been analysed and nothing weird was discovered, I had Joel from Haematology come have a chat with me. They had basically decided that I had probably always had a low white blood cell count, and now they just had to decide whether to give me a boaster shot to get my neutrophil count up for the flight home...or to just leave it and let me get on the plane.

My parents and I began to get excited; if I didn't need the boaster shot I could potentially be home the next week! But oh it was such a waiting game, we just didn't know what was going to happen. It was so very frustrating for me, because I felt so much better and try as I might to mentally encourage my neutrophils, it was obviously completely out of my control.

In terms of walking I began going to the bathroom without my rollator. The week before a 10m walk took 2.22 minutes and by Monday it took 38 seconds. By Tuesday I walked 160m and by Wednesday I walked for a whole six minutes. I began balancing on one leg by the end of the week, a hilariously difficult challenge and something I still struggle with four months on (but I'm bloody getting there!) I even started practising the stairs without holding on, which is something that four weeks prior I couldn't even imagine.

'Good leg to heaven, bad leg to hell' was how I was taught to use the stairs again, as my right leg was always a bit weaker from the surgery I'd had a few years before. I had a student physio by this time, and he was pretty buff! Holding onto me as I wobbled up those first few steps I was sorely tempted to fall back into his arms and do the whole 'Oh I'm just so weak, hold me!' act. But I didn't, because I'm not a pathetic little teenage girl...although like I said, tempted!

By the weekend I was told I was finally allowed out of the hospital grounds. Eight weeks of being stuck inside meant I had already become institutionalised in a small way. I was nervous.

At the beginning my doctors told me I would walk out of the hospital, something I couldn't believe. That Saturday, I stood up out of my wheelchair and walked out of the main entrance to get a taxi with my parents. I wasn't nervous any more, I was elated. We took a trip to the Palmaton, one of the top three attractions of Townsville. As you can tell, if seeing some palm trees is your best form of entertainment, then you know you're not in the most exciting place on earth.

Still, it was lovely. We saw hundreds and hundreds of Fruit Fly bats in the trees and I can still remember the acrid smell of them all. I felt like I was smelling everything for the first time, it was all so powerful because it was real life, not that disinfectant hospital smell. We also had lunch together in the tea rooms...real food! Oh it was a happy day.

And then it was week nine and we got the news. 'Tarsha, you're ready to fly home'. YES!

Please note, the picture below is the first picture I took standing up on my first outing. In the background is the Ross River...the bastard that may have caused the virus that caused the GBS!