Level-Up: Part 51
I’ve been hanging off on writing this post. Initially it was because I was too tired, but also because there’s a lot to say and I wanted to arrange it neatly in my own mind before sharing it.
Last week I went on a short holiday to Devon to coincide with my dad’s PhD graduation ceremony. The first thing I have to say is that I had a great time and it felt good to have a proper break with no computer screen to stare at. The biggest thing to say though is that in terms of what I pushed my body to do it was the most accomplished thing I’ve done to date. I’ll break it down into two sections to make it easier to discuss.
Before last week the most train travel I’d managed to do within the last four and a half years was one hour. A single hour from Cardiff to Bristol and then the same journey back a short time after that. Exciting as that was, it left me tired afterwards. The journey had been smoother than the local trains but also faster, so it made me a little more queasy and I had to avoid looking out of the windows too much. This journey would be one local train of about 10 minutes, another hour journey to Bristol, a short break and then a little over two further hours to Plymouth. The first two sections of the trip went reasonably well, although I don’t think I’ll ever get used to how terrible the Severn Tunnel makes me feel.
The third and longest section was more of a challenge. I was already starting to feel tired and for the first hour of the journey I had to sit on the outside of someone I didn’t know, so had nothing to lean into. I could have switched seats, but if I wanted to stay travelling forwards I had to stay where I was. This line of track also has a lot of tilts and turns to it, as much as a train can turn. So there were several points where it felt like I was on a rollercoaster ride and became incredibly swimmy and unsteady. I just tried to focus on reading comics on my iPad, which served as some distraction, but trying to make my eyes focus on quite small print when I was already dizzy maybe didn’t help.
Thankfully, after a few people left the train and left some more suitable seats free I moved across. Having the wall of the train to lean into made my natural slump to the left a little easier because I didn’t have to work so hard at keeping my body upright.
We eventually made it to the hotel. I was incredibly tired and, I’ll be honest, massively overwhelmed by what I’d done. I just cried it out for a while and tried to get some rest.
Coming home I was starting from a very low energy point and with the feeling that’s a little like a shaken snowglobe. We’d done a lot over those few days, far more than I was expecting, and there hadn’t been much time to catch up. Still, I had to go home. That’s the frustrating thing about making plans with a vestibular disorder: you just don’t know which days are going to be good and which will be bad. The simple answer is to make no plans at all, but then you don’t get to do anything. Coming home I managed to have a wall to lean into on both trains, which helped a lot. I also switched to watching some TV and films I’d downloaded rather than reading. This was a much better distraction from the window as it didn’t require much effort. By the time we got to Bristol I wondered if I might collapse because I was so worn out and hadn’t been given a chance to sit down directly after getting off the train. But I held on and bought a pasty to cheer myself up.
I’m massively proud of being able to complete both those long journeys. There were times when I compared it to the travel I used to do before I was ill and got a bit down about how different and difficult it felt. But I’ve tried to fix on how big an achievement it is as part of my life as a disabled person. In that sense it felt like a much happier thing. My next step is to try taking some longer trips by myself, but that brings up a whole new set of issues to think about. How will I get my luggage on and off the train in time before it pulls out of the station again? I get incredibly dizzy if I stand up while the train is moving. What if I need a wee and have nobody to hold on to? Which will be the best seats to book in advance? I only have one free hand. If I want to grab a coffee and pull my bag behind me, that’s going to be near impossible. What if the train is severely delayed and I’m already feeling rough? Individually they’re all small things, but put them together and there’s a lot to consider as a disabled person travelling alone. Still, it’s the next logical step and pretty exciting considering just a few months ago I just sat at the local station to remember how it felt to be there.
The trip was fun and, like I said, so good to get some proper sea air. Devon and Cornwall are some of my favourite places on the planet, so to be back there felt special. There’s no getting around it though, in fact it became a running joke, the whole of Plymouth is on a massive tilt. Nothing is flat. So for me, who struggles to walk on flat ground, this was a big challenge to say the very least. The first walk down to the waterfront after arriving was a bit of an eye-opener in that sense. Still, I managed to slowly get down there for a coffee and a sandwich and make it back to the B&B, which was about 3 streets away.
Later that night it was suggested we all go out for dinner. I was pretty worn out by this point but agreed to go. Unfortunately, it wasn’t really agreed where we should go and we ended up roaming the streets looking for somewhere to eat. I just can’t do this kind of spontaneity at the end of such a big day and I was lucky not to have fallen over on our way to the burger diner that was eventually settled upon. Coordinating my legs got impossible and I was very upset by this. What’s better for me is to know where we’re going and get a taxi there. I’d love to go on a voyage of discovery, but sometimes it just can’t happen. Three of us got a taxi back.
The next day was graduation day and with it not starting until 4pm I planned on spending the morning staying horizontal, but I also really wanted a cream tea. I agreed to meet my family wherever they stopped for one in a taxi, but there was a little miscommunication. They assumed I meant wherever they stopped for a breather and I ended up walking the few streets to meet them because they were still fairly close, only to find that I still needed to walk up and down hill to get to the cream tea cafe. It wasn’t easy and I had to stop and sit a few times along the way, but I did it. What’s difficult to explain to people is how I and others with chronic illness need to pace ourselves. Everything we do has a cost along the way, so you have to selective. Looking for alternatives often comes across as fear, but fear holds me back from doing very few things these days. We have to grab energy-savers where we can so that we can enjoy other things. It would have been so much better for me to get a taxi to the cafe. It was miscommunication, but I need people to understand that when I say no to one part of something, it’s just so I can enjoy the next thing more. Let’s marvel again at the cream tea though.
This all left me more tired that I’d anticipated and I rested so much when we got back that I didn’t leave myself much time to get ready for the ceremony. We made it though, enjoyed the 90 minutes, stood for the photos and then went to a buffet reception afterwards.
From here we walked back to the B&B to drop a few things off and then went straight to a restaurant for a celebration. The food was beautiful but I was starting to feel very spaced out by this point so can’t remember too much of it. At one point I left the table for 10 minutes because the noisy atmosphere was making me feel quite disorientated. The quiet break seemed to help. Maybe I was just distracted that it was set inside a working gin distillery! I declined the offer to go to the pub and headed back to the B&B in a taxi.
Wednesday morning we were heading home and as much as I wanted to stay sitting down before the train journeys home, it seemed like a waste of the last couple of hours there to sit watching TV. We went for a short walk along the waterfront (again, in something of a daze) then headed for the train station. Which brings me neatly back to the journey I’ve already told you about.
It’s a little surreal looking at all this written down. Only I can really understand how unwell I felt through so much of it and how much strength it took to ignore and push through that in the name of enjoying myself. And only a handful of the people who were there at the beginning of this illness will appreciate along with me how astonishing it is that I’ve been able to push myself to do these things. It may have taken quite a few days to recover from it both physically and emotionally, but I’ve always been determined that I would eventually assert my authority over my illness so that it doesn’t dictate how I live my life. And while last week may have opened up lots of new questions needing answers, it also let me tick a few more things off my list of stuff I thought I’d never do again. Quietly, that means more than most will really understand.
Every Sunday (I know it’s Tuesday) 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.