How I Am

Several lovely people keep checking in with me to see how I am. I think they mean “How I am feeling” as opposed to say, “How I am still alive after everything that has happened these past couple of months“, although frankly that feels like a relevant question too.
The answer is “Ok”. And also, “I don’t know”.
I’m able to attend to most of my daily needs- showering, toileting, getting dressed, eating and drinking, entirely independently. I can walk without help and without falling down. I can even manage the stairs with my trusty crutch. I left the house for the first time yesterday and that was totally fine. So really, when I think about it, I’m doing ok.
Certainly compared to this time 2 weeks ago, when a bruised and defeated version of myself lay in a bed on AMU hooked up to the magical 2nd dose of immunoglobulins that seemed to kick start my recovery. In fact some days when people ask me how I am, I feel like resorting to hyperbole and images flash through my mind of me cartwheeling around the room shouting “Spectacular!” and “Superb!” because physically, although I’m probably only about 85% back to normal, compared to how bad I was I feel about a million times better.
On the other hand, when people ask me how I am, I feel stumped. A simple question leads to a spiral of confusion. At any given point in time I find it almost impossible to identify a singular emotion that would cover my current state of being.
I feel genuine happiness at being home and reunited with Chris and my boys. I feel so much gratitude and huge crashing great waves of relief at how well my recovery is going. I feel stressed about our impending house move, and frustrated at the timing and how inconvenient it is and how little help I can be on a practical level. Although there is also a tinge of excitement mixed in there, of fresh starts and new beginnings. I feel worried about family and friends, who have their own struggles and who’s battles, unlike my own are not yet definitely won. I feel terrified that this may yet turn out to be only an interlude in my own battle and that my symptoms might come back or I might wake up one day to find I can’t move again.  I feel sad about the loss of our baby, about the plans we made that now won’t be and the space in our future that now waits to be filled, or not. And occasionally I feel overwhelmingly and irrationally angry. I’m talking pure unapologetic rage. Towards people, towards things, towards life itself. It comes out of nowhere and in a flash it’s gone again, leaving me wondering if a side effect of IVIG therapy is some kind of Banner-esque transformation.
The fatigue aspect of recovering from Guillan-Barre has been spectacular. Always inclined towards narcolepsy, in the sense that I have an ability to fall asleep any time any place (a distinct advantage when it comes to juggling shift work and motherhood) I now find myself like a cat. Delighted to be alive and yet unable to fully appreciate what life has to offer because I need to spend about 16 hours of every 24 asleep. Waking up is a several hours long process compared to getting to sleep which doesn’t even require my eyes to be closed before the process begins.
Today I didn’t get out of bed until 10am. I spent most of the afternoon sat on the sofa in my pyjamas wrapping ornaments and picture frames in bubble wrap and placing them in a box because it was the most “helpful and yet restful” thing I could think to do. Even so by teatime I was unreasonably exhausted and I fell asleep whilst putting Toby to bed, before even he himself went to sleep and woke up an hour or so later, summoning up just enough energy to transfer myself into my own bed before zonking out again.
Admittedly I’m awake now but that’s only because Chris came to check where the hell I had got to and his presence in the room woke me up (and scared the shit out of me) so I decided to sit and drink some ribena and potter a little on my phone before falling asleep at a slightly more reasonable hour for someone (well) over the age of eight.
When I think of how I used to spend entire days from 6am until 7.30pm in sole charge of the kids and then go work a busy night shift before getting back home at 8am and then sometimes sleeping for a couple of hours or maybe not at all before continuing where I left off with shopping and cooking and cleaning and playing etc. It’s hard for me to comprehend how I was even still alive.
These days all I can manage is some light packing and/or childcare duties (after about 12 hours sleep) and I’m done for. It’s like getting used to a whole new pace of life. Pace being the operative word and something I think I am going to struggle with because I like everything doing yesterday and find it difficult to differentiate between urgent and non urgent tasks. Chris calls it “impulse control issues” as it often leads to me undertaking ridiculous tasks at the most inopportune times because I can’t bear to just let it go for another minute. I know I am going to have to learn though if I want to keep the momentum going with my recovery without setting myself back. It’s just going to be hard.
So, if you ask me “How I am” and it takes me a few minutes to formulate a reply. Or indeed if my reply is a garbled nonsensical string of words, then you’ll understand why.

The Stairs

Written on Thursday 10th October

I just passed my stairs assesment! Woot woot. It was a pass/fail sort of thing but if it had been graded I reckon I’d have got an A-

Good attitude, ability to follow instructions and enthusiasm. Points deducted for nerves, occasionally forgetting where my crutch is supposed to go and speed (or rather, lack of it).

I can’t believe that in just one week stairs have gone from being my arch nemesis to being just another normal everyday thing that I can manage. Admittedly with a lot of extra effort and a crutch but even so.

We no longer need to consider bungalow living, unless we want to. There is a certain appeal to it that I keep coming back to- of having everything right there on the same floor. Plus I like that it’s a bit different and non-traditional, in this country at least.

On the other hand, the dog could and would go anywhere he liked. Cat fur on the bed is bad enough, Fudge sheds about a guinea-pigs’ worth of fur each and every day. And cooking smells would get everywhere. Plus, it’s just not very sexy is it, if we’re honest? Living in a bungalow under the age of 30?

So, it’s good that we now have other options 🙂

The Plan

Written on Wednesday 9th October

The plan from neurology, when it came was simple: IMMUNOGLOBULINS.

A medical registrar I’d never met before came to tell me and to explain the risks. Chris was with me at the time and she told us that the biggest risk was of developing a blood clot but that they would try to reduce that by prescribing an anticoagulant. She also explained the risks of reaction and that there was a tiny chance of it causing abnormalities in my pregnancy.

I’d like to say that it was a huge decision to make, that we deliberated for hours, weighing up the risks vs reward, but it just isn’t true. A couple of minutes of hesitation was all it took.

At that time I couldn’t move independently at all. So yes, I worried about the risks, and yes even now I feel horribly guilty that I consented to something that could potentially harm our baby, but what kind of life could I lead without the use of my arms or legs, what kind of mother could I be to the 2 children I already have?

The chance of the immunoglobulins having a significant impact on my condition far outweighed the small possibility of harmful effects. To say yes was an obvious choice.

(And yet here I am, trying to justify it on paper).

I had my first IVIG (if you think I’m typing Immunoglobulins each and every time you can think again!) on Friday evening (the same evening I had to be picked up off the bathroom floor). On Saturday morning I could get off the toilet by myself. By Sunday morning I could shower by myself. By Monday morning I could walk alone with 2 crutches. Yesterday morning I went down to 1 crutch. I had my final dose yesterday evening and aside from a headache today I feel like I could take on the world! (Or at least be a functioning part of it!) It has been a truly amazing transformation.

Each bottle of IVIG comes from 1,000 individual donors. I weigh 68kg so was prescribed 30g but as the hospital don’t supply 30g/300ml bottles each evening I had 2 bottles- a 20g/200ml and a 10g/100ml. Over 5 days that means along with all the doctors and nurses and researchers and drug companies and whichever brilliant bastard came up with the idea in the 1st place 10,000 strangers who could be arsed to go donate blood contributed to my recovery. 10,000 ordinary people who had a needle in their arm and a brew and a biscuit on their lunch break and I can walk again. That’s pretty damned amazing I think you’ll agree.

Glass half-empty? Or full of shit?

Imagine if you will, that you arrive home one day to discover your house has been burgled. Half of your life’s belongings, ranging from the valuable to the priceless have been taken.
I’m willing to bet that most people’s reactions would be “For fuck’s sake! I can’t believe the thieving bastards have stolen half of my stuff!”and not “Oh well…at least they only took half of my stuff”
I don’t think that is anything to do with whether or not you’re a so-called optimist or pessimist. I think it’s just human nature.
Maybe later, weeks down the line you may get to a point where you think “Well, it could be worse, at least they didn’t take my cat / glasses / signed copy of my favourite book / whatever” but most normal people need a period of disbelief, of shock, horror, grief and anger first.
If the morning after you were burgled, a well-meaning friend or neighbour suggested you were lucky, and encouraged you to look on the bright side, you’d probably be less inclined to agree with them than to punch them in the face. Or maybe that’s just me?
This is relevant why? Well because it provides a good analogy for my life at the moment.
Only rather than coming home to a ransacked house, I woke up one morning in a body that no longer operated as it should. And as I struggle through each day, trying to continue with life as best as I can with limited functioning and mobility people keep telling me “It could be worse”.
This is a moronic statement, akin to “smile, it might never happen”. Yes of course it could be worse. There are not many situations that are so bad they couldn’t possibly be worsened in some way. But let’s be honest, if you’re telling someone “It could be worse” then it could probably also be a lot better.
I can think of hundreds upon thousands of things that I’m sure are so much worse than having Guillain Barre Syndrome that they’re incomparable. Does that mean I should feel delighted in some way that my situation is only as bad as it is?
Or perhaps, am I allowed to feel sad, scared, and down right pissed off?Am I grateful I didn’t end up ventilated on ICU? Of course! Am I devastated that this has even happened to me in the first place? Damn right I am!

It would probably be easier for me to “look on the bright side” if I could dress or undress myself without assistance. If I could pick up my own children. If I had made any progress at all since being discharged from hospital over 4 weeks ago. If I’d had even a glimmer of a hint of improvement or recovery. Maybe when getting up from a sitting position doesn’t take every ounce of effort and energy I can muster, maybe I will have some leftover for “counting myself lucky”.
Until then you’ll have to excuse me if I continue to have moments of panic, terror, depression and fury. You see my glass is neither half empty nor half full. I’m just human.