Guillain-Barré Syndrome, Queensland and Me
Sunday 17 August 2014
Bite Me
Thursday 6 February 2014
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.
Monday 14 October 2013
One Year
Friday 10 May 2013
Running Up the Stairs
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.
Monday 11 February 2013
Living
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!
Friday 1 February 2013
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'.
Wednesday 23 January 2013
Waiting
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!