Level-Up: Part 39

I hate hospitals. I hate the smell. I hate how hot they always are. I get it. Sick people need to stay warm to keep their defences up. But those dark, stuffy corridors do nothing for my already far too warm blood. Also, with the exception of the maternity ward, I can never shake the feeling that everyone’s there because something’s wrong.

I’m fine if I’m visiting someone else. I remember how relieved I was when familiar faces appeared at my bedside when I was stuck in my hospital bed following surgery a couple of years ago. They were achingly long days, literally and figuratively, where my only view was the woman pestering nurses to wheel her out for a smoke and the delirious elderly lady who regularly mistook the floor for a bed pan.

This week I’d been called to the vestibular rehab centre for a check-up after over a year. For the first time since becoming ill I had to do it alone. The prospect of just being in the hospital, making my way through hordes of people and tackling the maze of corridors to bay 14 without an arm to hold on to and company in the warmest waiting room known to man was a daunting challenge by itself. Knowing that once I was there I was going to have to discuss everything that’s happened over this past year made it feel even more like something I wanted to cancel. I didn’t.

Thankfully, I didn’t have to spend more than 20 minutes in the waiting room and they’d put two large fans in there to offset the molten air. Some time ago I had walked into the rehab therapist’s office, burst into tears before even siting down and very clearly said “I don’t think I can do this anymore.” I don’t know what I expected her to do. I knew there was no miracle cure. But I just didn’t know what else to say. I wanted it to all go away.

It’s making my eyes well up recalling that moment because I’d never felt so much that my life had been stolen from me, with no way of getting it back. She sent me away that day with a few new things to try, but really, I still felt lost and slightly abandoned. I felt like a number being ticked off a list. It was one of the first indications that I really needed some counselling to help me accept what this illness had done to me. And if I was going to get it, I’d have to figure out a way to do it myself.

This time, walking into her office felt quite different. Telling her everything I’d been through over the past year or so and explaining how proactive I’d been in the face of such adversity felt pretty great. I didn’t just relay everything I’d tried in learning how to walk a little again and in managing difficult environments, but in beginning the painful process of grieving my old life and building a brand new one from scratch. I was still very aware of my frustrating limitations, but placing who I am now against the frightened, broken woman who had sobbed in that same chair a year or more ago, it was a stark reminder of just how hard I’ve worked. She was impressed. I may even have been a little impressed with myself. It’s not often I feel that way.

We talked about carrying on working hard, but not to the point where I exhaust myself. If you’ve read any of this series you’ll know that’s a bigger challenge than it sounds. We discussed how I might start doing my exercises in low light and in the dark, where I still have a fairly major struggle in staying upright. She reminded me to try moving my head and looking around when I’m walking. Not to where I’m putting myself in danger of falling, but I do tend to hold my head pretty still because I’m concentrating on walking in as straight a line as possible. And finally, we discussed the reality that this really might be with me, to a certain extent, forever. That thought is never comfortable, but it’s one I’m learning to live with.

Before leaving she announced that she would now be making me an ‘open appointment’ patient, where I stay on their books but they won’t need me to come in for any appointments. It’ll be on me to decide if and when I need them. You call us, we won’t call you. There’s something slightly scary about that. It has a finality to it. Like they haven’t got anything else they can do for me and the responsibility to live the fullest life I can with my disability is entirely down to me now. But there’s also a freedom to it too. It means I’m coping well enough that they trust me to look after myself. And if you felt able to watch the video I made last week, you’ll understand just how much being able to do that means to me.

One of the only advantages of going to the hospital is that they have a Starbucks in their concourse. Going there on the way out had been keeping me going throughout the day. I’d planned on grabbing a drink and leaving, but it felt like an important day, so I stayed and let the enormity of it sink in.

starbucks_heath_hospital

I bought myself a new mug on my way out to mark it too. Just being able to sit there was something I don’t think I could do the last time I went to the rehab centre. The fact that I’ve sat writing the first draft of this post in a coffee shop, next to open windows and with cars flying past (albeit while feeling like I’m drinking cappuccino on a cruise ship in a storm) is so far beyond what I could have imagined the last time I sat in her office. It’s quite overwhelming.

fino-lounge-whitchurch

So this is it. This is my life as a disabled person and I’m very slowly getting to a point where it’s just a little bit okay. I won’t pretend that I’ll definitely feel fine about it tomorrow or even an hour from now. I think I run a gauntlet of emotions with it every day. But the moments where I feel like I’m doing alright are precious, because they just didn’t exist at all in the past. One of my favourite songs is a country song by Pat Green called Carry On. I’ve listened to it a lot this week. It’s about being fed up with everything and taking a break for a while before you crack on again. I can’t have a holiday at the moment, but the little moments of quiet where it feels like I’m coping or winning are a mini-break of their own. As Pat would say, “I’m okay. I’m alright. Carry on.”

Trying to make the best of a bad situation doesn’t take the bad stuff away. It doesn’t make the fact that I was so dizzy on Wednesday I spent most of the day throwing up. There have been times this week where I’ve been so tired and in need of a hug that it reduced me to tears. And yesterday I kept being gripped by the kind of brain fog that makes your tongue and lips work against you in a way that speaking a simple sentence feels like you’re practically having to chew it out. But those days don’t necessarily make the good ones any less valid either. I would like some more of those, please. And if the universe is listening, feel free to sprinkle a little magic into them too. I won’t complain.

Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.

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