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'.