Initially this blog post was going to be about the Bristol International Balloon Fiesta, but unfortunately it was cancelled due to the weather, so I didn’t get to see it. However, I’ve decided that I’m going to focus on the more important aspect of my trip to Bristol – my first time using a wheelchair.
Myself and Mr. J went to Bristol to spend the weekend with our friends (and obviously attend the balloon fiesta), but we knew that it was going to be a huge challenge for me, walking around the shops, and spending all day out and about without being able to properly rest. So, we made the decision – after much discussion, and ooh-ing, and ahh-ing from myself – to borrow a wheelchair for the weekend, to see if it would benefit me in any way.
I have to be honest and say, that I’ve been in two minds about a wheelchair for some time. On the one hand, I don’t want to feel as if I am giving in to mito, and accepting the boundaries that it imposes on me, and I’ve felt that by having a wheelchair, I’m making it easier for mito to take hold of my body. Will I become reliant on the chair? And will I opt for the easy option of staying in the chair all of the time, to avoid the extra pain and exhaustion that comes with movement?
But on the other hand, I want to be able to spend days out enjoying myself, and not be in so much pain that I have to go home early, or constantly look for seats to sit down every five minutes. I want to be able to go out and about to places that would normally present as a huge no no for me, walking wise. And I want to be able to spend days out doing, and seeing, things that don’t have to be cut short for Mr. J, or my friends, or my parents. In short, I want to live my life in the best way that I can, and experience everything, without having it completely hindered by mito.
So, we set off for Bristol with our borrowed wheelchair in the boot of the car. Bristol isn’t too far from us, so it wasn’t an excruciatingly long drive, and once we’d arrived and checked into our hotel, we were able to have dinner in their restaurant, and have our friend join us. That was a welcome relief, as although it had not been a very long drive, I was still exhausted and aching, and I knew we had an early start, and a full day the next day.
Our plan was to spend the day at the Aquarium, have some lunch, have wander around the shops, have a coffee, and then meet up for dinner in the evening. Whilst we were waiting to meet our friend, Mr. J suggested that we take the wheelchair for a short test drive, just to see how I felt in it, if it was comfortable, and whether or not it would be of any use to me.
I’ll be completely honest with you, and say that I was apprehensive. For the reasons I have stated above, but also because I was worried about what other people would think of me when they saw me sitting in a wheelchair. And what if I wanted to get out, and people saw that I could walk? Would they think that I was taking advantage of using a wheelchair when I had use of my legs? Or would they think that I was ‘putting it on’? I was so nervous, that it bled into embarrassment, and I really wasn’t looking forward to test driving the wheelchair in public. But Mr. J, as always, was reassuring, and comforting, and managed to work his magic and talk me around. First, just sitting in the chair and seeing how it felt comfort wise. Then, just a gentle push around the car park. And then the big one – taking it out into the big wide world.
I always forget how fast Mr. J walks, as he’s always holding onto me, and going at my pace. But damn that man can move! We were around the corner and down by the riverside in no time at all! And as embarrassed and as nervous as I was, I had a smile plastered onto my face the entire time! It was so refreshing to be able to go at a ‘normal’ speed! Even my hair got a bit wind swept! Before I knew it, we were outside the Aquarium, surrounded by families and couples, groups of friends and tourists. The nerves hit me like a brick wall – was anyone looking at me? Did I look silly in a wheelchair? Were people wondering what was wrong with me because I wasn’t wearing a cast on my leg, and I didn’t have Mitochondrial Disease tattooed across my forehead?
We sat outside a coffee place with a cup of tea whilst we waited for my friend. When she arrived, she was thrilled that I was using the chair. Like Mr. J and my family, she is of the latter opinion that I spoke of earlier. That I’m living my life to the best of my ability, and making the most of spending days out actually enjoying myself. And I know that it the right attitude and opinion to have, and if anyone in my position came to me with their worries, I would dispel them by telling them exactly the same thing – that you’re living your life, and enjoying days out of the house in the best way possible.
The Aquarium was huge, and in all honesty, if I hadn’t had been in the wheelchair, I never would have seen it all, or watched certain tanks for longer than a few seconds. There weren’t any seats, and it was packed in there, so there was no where that I was able to rest. However, in the wheelchair, all I had to worry about was watching the fish and sea life. Being in a wheelchair is a daunting experience for the first few times (in my opinion anyway), and I can imagine that some people may not know how to react to someone in a chair, especially if they’re children. And the Aquarium was filled with children! But to my surprise, a beautiful little boy walked straight up to me, held out his hand and introduced him, saying that it was nice to meet me. I was so touched by such a lovely gesture. He can’t have been much older than six years old, and I told his dad how wonderful it was that he was so polite and friendly. It really was one of the highlights of my day, and put to rest a couple of anxieties that I was having. Being in a wheelchair was a completely new experience for me; to not have to worry about where I could sit down and rest. I could enjoy myself, and there was no clock watching to see how much longer I could last before I needed to go back to rest. I don’t think I would’ve enjoyed the Aquarium even half as much if I hadn’t had been in the wheelchair. Which really is testament to how useful and beneficial it was to me. I was even able to have a go on a Ferris wheel that was outside the Aquarium! Call me a big kid, but I was taking full advantage of having conserved what little energy I have, and putting it into something fun, that I usually wouldn’t have been able to experience! Unfortunately for me, my Ferris wheel experience was more like a Final Destination experience, and was so terrifying that I could probably dedicate an entire blog post to it! But nevertheless, in between my silent prayers for coming to a halt safely, me and my friend spent the entire ride laughing. And that made the spinning wheel of hell totally worth it.
After the Aquarium, we got lunch at a little restaurant by the riverside. Everywhere was busy, and the wheelchair needed to be folded to get it into the space by our table. This was one of my worries. Whether people would be watching me getting out of a wheelchair, wondering if there was anything wrong with me at all, if I was able to use my legs. But I got out, and you know what? No one batted an eyelid. Nor did they bat an eyelid when we had finished our lunch and I climbed back into the wheelchair.
We agreed to meet up for dinner with our friend and her fiancé a little later on that evening, and in the meantime, Mr. J and I would go back to the hotel for a bit of a rest. I had certainly felt a huge benefit in using the wheelchair, and couldn’t have experienced all that I had already, but I was still exhausted, and needed to take a break.
Having spent the day in the wheelchair, I thought it would be best if I walked the short walk to dinner. It was a bit of a mistake, as although I had spent the bulk of the day in the wheelchair, I was still exerting energy by tensing my muscles and holding my body taut as Mr. J pushed me around. I wasn’t ready to relax into the chair, and so I was still experiencing the aches and pains that I would get usually. I didn’t realise that so much energy could be used up just by unintentionally tensing your muscles. Nevertheless, we parked in a nearby multi-storey carpark, and walked to the restaurant to meet our friends. By the time I got there, I was in pain, and a bit wobbly on my feet, but the evening was really lovely, and we had a great time chatting away and eating pizza and drinking cocktails (mocktails for me!).
I welcomed the hotel bed at the end of the evening though. We’d had a brilliant night, and it had felt so good to be out enjoying time with our friends, and just doing ‘normal’ things, but by the time I crawled into bed, my feet, ankles and legs were double their size. I think I expected them not to swell, seeing as I’d used the wheelchair, but unfortunately, they were huge – as they usually are when I’ve done any form of movement – and painful. So the comfort of the bed was like an aphrodisiac to my muscles.
We’d only managed a few hours sleep because we’d got back to the hotel so late the night before, so it wasn’t a surprise to find myself unable to open my right eye completely the next morning. We were due to go to the Balloon Fiesta that afternoon, so we thought we’d spend the morning looking around the shopping centre, and having a game of mini golf. Don’t get me started on Mr. J’s love of mini golf. And one that we had already played in the past, no less! It wasn’t too bad, playing mini golf, apart from the lack of air conditioning in the building, and the lines of sweat running through my make-up. I always used to think that I was A) hitting extremely early menopause, or B) just the fat girl who is always hot and bothered. But it makes sense now. Mitochondria help to regulate your temperature, and so it’s opened my eyes as to why perhaps when I’m hot, I’m sweltering, and when I’m cold, I’m freezing. It wouldn’t be uncommon for Mr. J to come home from work and find me huddled up in the lounge with the heating turned up to thirty degrees, nor would it surprise him to find me sitting in my underwear with the fan blasting on me, and the patio door and windows open! It’s a fifty/fifty toss up as to how I’ll be feeling on any given day, temperature wise.
I’d decided that because I’d used the wheelchair the day before, I wouldn’t use it to wander around the shopping centre. I didn’t want to rely on the chair just because I had access to it. But I have to say, it would have been a much-needed relief if I had used it that day. We found out that the Balloon Fiesta was cancelled due to windy conditions, and so we spent the day in the shopping centre. So, what I thought would be only a couple of hours ambling around, holding onto Mr. J’s arm, turned into quite a few hours ambling around, holding onto Mr. J’s arm. Don’t get me wrong, I thoroughly enjoyed the shopping centre; I mean, what woman doesn’t enjoy a shopping centre?! But it was hampered by my inability to walk unaided, and the aches and pains that were stacking up inside my body. I wanted to go to the cinema, and take part in an Escape Room, wander around all the jewellery and make-up shops that we don’t get close to where we live, but I didn’t have the oomph for any of that. No sooner had we arrived in the shopping centre, I was ready to go somewhere to sit down and rest. But there are only so many teas and coffees that you can endure when on a day out, and I’m sure Mr. J and my friend didn’t envisage their day as being spent going from coffee shop, to coffee shop. No matter how many stops we made, however, neither of them complained, or let it show that I was a burden on their day. And for that, I’m forever grateful.
We ended the shopping trip a little earlier than planned, so that I could go back to the hotel to rest for a couple of hours before meeting again for dinner. But this time, Mr. J and I decided to get an Uber, after the amount of walking I had done that day. I was good for nothing, and I don’t think I could’ve done any more walking if I’d tried. So, hearing the tapping of Mr. J ordering an Uber on his phone was like music to my ears.
We met our friends at an authentic little Mexican in the heart of Bristol, with the most wonderful staff, rustic and colourful décor, and food so delicious that I think I could eat there every day for the rest of my life! If any of you happen to enjoy Mexican, and are visiting Bristol, or live nearby, I highly recommend taking the time to have a meal at Casa Mexicana. You won’t regret it! Unless you don’t like Mexican. In which case, I suggest taking a trip to Zero Degrees, for the best pizza I’ve ever had! And if you don’t like pizza, then I’m afraid I have no more choices for you from this particular trip, but also, are you crazy?!
To sum it all up, our few days in Bristol was really fantastic, and we thoroughly enjoyed it, despite not being able to experience the Balloon Fiesta. It was so, so lovely getting to spend time with our friends, and it was wonderful to be able to travel up to them for a change, as they’re always good enough to travel down to us to accommodate me and my needs. Having friends that understand your situation with mito, or with any chronic illness, really is important. I’ve lost a few friends since really being unwell, but the ones who stick around are the ones you know are for keeps. I was lucky enough to know that the friends who are still around now, were the ones who weren’t going anywhere. And I’m extremely grateful to them for that. If you’re reading this, you really do make a huge difference to my life, and I love you so much for it.
As for my first experience using a wheelchair, I think I’m still in two minds about it, fighting against the nerves and embarrassment, and the worry that people may be looking at me differently, or that they may wonder why I’m in a chair when I can get up and walk a few paces without it. But the difference it made to my day was undeniable, and no amount of nerves, embarrassment, or worry can change that. By using the chair for long days out, or times when I know there will be lots of walking, I’m helping myself by conserving what little energy I have, so that I can enjoy more activities, and more days out with family and friends, without having to look for a seat every five minutes, and without having to cut a day out short, and ruin it for myself and others. I think I saw a chair as a limitation, and that I was letting mito win, but in reality, it’s opening up my world to so many more possibilities, and opportunities. It’ll take some time for me to get my head around the anxious side of my brain, and convince it to work with the logical side, but that’s how my brain works for almost everything in life. So, it’s just one more thing to add to the list. But I can work on that whilst I enjoy my time outdoors, and outside of my four walls, being pushed around places I never thought I’d be able to properly experience again, in my very own, new wheelchair. That’s right, you read it correctly. My wheelchair. I’ve taken the plunge and ordered my own, without feelings of disappointment in myself for giving in. I’m working on the issue of letting mito win, but the more I experience in the chair, enjoying my life, the more I realise that a wheelchair is helping to release aspects of myself from mito, rather than restrict my life, living with mito.