I haven’t written anything since November, mainly because I was busy and then poorly as a result, but also because I didn’t know what to write. I went back and forth between ideas, thinking ‘who cares’ and then trying to come up with things people might want to read. After much deliberation and a nudge from a friend, I’ve decided to simply give an honest update about what I’ve been up to recently.

Back when I posted in November, my M.E. was pretty stable and I was functioning at my baseline level which typically involves dressing and washing myself, working from home, enjoying quiet hobbies and some low-energy socialising, then receiving help from my parents with food prep and chores. My phased return to work went surprisingly well with only a few bumps in the road, and I’d been consistently doing 3 hours a day from home for a while.

So, I made the decision to spend almost two weeks staying in York. Naturally when I stay away from home, my routine changes somewhat, but I try to keep disruption to a minimum. I can’t manage the trains yet, therefore I have to line up a lift there and back again which can be difficult at such a busy time of year, however this wasn’t half as pain staking as packing for such a long stay. Before I got sick I was one of those strange people who loved packing, and I never appreciated what a mammoth task it is. My Mum usually gives me a hand which softens the blow, but it’s still a huge undertaking. If I wasn’t already tired after all that, I then had to help my Mum lug my heavy power chair in and out of the car boot at both ends because help isn’t always available, and one person cannot manage this beast alone. I’m not sure I’m much help, but it’s better than nothing.

When I’d finally made it to York, I kicked off my trip helping to run a bake sale in the office, raising money for Movember – we managed to raise £220 which was amazing and for such a good cause! Though, in typical me-fashion I went completely overboard, from working a few hours at home everyday, to almost a full day in the office. Despite my over-exertion, it was lovely to be back in the office and working, which may sound bizarre to some people, but this is the place where I have met many of my closest friends and it is a place that has always been there for me. I rarely get to see my friends anymore, people get busy and life sort of goes on without you when you’re ill. Going back to York is always bittersweet: in some ways it is so familiar, like going home, but in other ways it is a painful reminder of how life has moved on without me.

I was also in York to celebrate my girlfriend’s (yes, I’m just casually dropping that in without explanation) birthday. Our birthdays are pretty close and we’d decided to plan each other’s so I had to get my thinking cap on. Bearing in mind we are both wheelchair users with allergies, finding something accessible to do is no mean feat (understatement of the year). We were also planning high and low energy options in case I had a poorly M.E. day.

I desperately wanted to take her to the Fairy-tale Christmas event at Castle Howard, it sounded perfect; the castle was dressed up for Christmas, with different rooms themed as different fairy tales, and the gardens lit up after dark. The pictures from the previous year looked gorgeous, and their cafe’s were even allergen friendly! The only problem was wheelchair users could only get the lift up to the exhibit in a manual push wheelchair… and we couldn’t exactly push each other around?! I called them countless times with no luck, left an email and an Instagram message asking if there was anything they could do to help, but nothing. After radio silence, I eventually got through on the phone, but they couldn’t accommodate. It’s so disappointing when places aren’t fully accessible, I was so excited to do something special together to celebrate. I’m not welcome in most places anymore because I’m in a wheelchair. Access obviously goes much further than wheelchair accessibility, but I find it so baffling that only a short while ago I was welcome and able to access any building I wanted without giving it a second thought, but now I can’t.

Instead, we ended up at the Van Gogh immersive experience in York, which was more energy-friendly in hindsight. Van Gogh’s paintings came to life in a short film projected around a blacked out church building, and it was so magical, I would definitely recommend. I did need my earplugs for my oversensitive soul, but I’m sure it wasn’t actually that loud. I didn’t realise how quickly we would be finished up there so we ended up with a chunk of time to kill before the taxi home. After a bit of trial and error, we ended up at the Cat in the Wall which was the cutest little find – kind of like a 20’s style nightclub, but quieter and seated. We also got to enjoy some of York’s festive lights afterwards! I’m so pleased we managed to go and celebrate together, even if it wasn’t exactly as planned.

The bulk of my trip after this involved recovering from all the excitement, which is honestly just my life – I do something beyond my remit and then suffer afterwards. Having a chronic illness is like a round the clock job, with no holidays. Every waking moment is spent preventing a flare or recovering from one, living life in a very structured way just to exist with as little pain, symptoms and fatigue as possible. Even then, sleeping isn’t necessarily restful. Everything is difficult, including socialising and going out in my case, so I can often feel more lonely in a room full of people than when I’m sat at home alone. As you probably gathered by now, trying to plan anything is a nightmare, especially considering I can plan something to the ends of the earth, and pace myself around making it happen, but then end up too poorly on the day. As frustrating as this is, I don’t think anything is more devastating than using precious energy on something that doesn’t bring me any joy. This does all mean however, that when I do get to do something I enjoy, it is all the more special.

Given that most of my friends are in York, there is much more temptation to push myself whilst there, as they don’t come across to Brid (where I temporarily live with my parents). I get so excited when someone actually suggests to meet up, I always try my hardest to make it work if I am given enough notice (spontaneity is largely a thing of the past lol). I was meant to see a friend for tea after work one of the nights, so I planned my week around this and didn’t sort any food out for myself that night. On the day, they let me know they couldn’t have food with me and were on the fence about whether they’d make it at all. I did end up seeing them, but after several last minute changes and nothing prepped for tea, I was already exhausted and didn’t manage much socialising. Of course, I know as well as anyone, there are occasions where this type of thing happens and can’t be helped, but when it becomes the norm it’s hard.

Afterwards, I actually ended up doing something spontaneous for the first time in a while; I went out for a walk (/wheel) with the friend I was staying with. We went into town to see the city lit up with the festive lights. Even though I was feeling the repercussions the next few days, it was so worth it, because mentally it was exactly what I needed and the lights were so beautiful. I often have to decide between my mental and physical health as certain things will exacerbate my pain and M.E. symptoms, but will give me energy and care for my mental wellbeing. This was one of those times.

My last bit of time in York was spent celebrating my birthday with my girlfriend, and she planned the most wonderful surprise – we went for an allergy-friendly afternoon tea at The Ivy. I’ve never been before so it was very special and they were incredibly accommodating of our disabilities. I know this should just be the norm, but sadly we live in a very ableist world where it is so often seen as a problem. The fact that they made us a separate afternoon tea and one that we could both eat is phenomenal and definitely the highlight – believe me if you saw the full allergen list you’d understand (but I won’t do that to you).

Before going back to sunny Brid, I went to the only hairdresser I trust (OSSIE at Spark) and had most of my hair chopped off to donate to The Little Princess Trust. I gave a whopping 12 inches which was terrifying because I’ve never really had short hair and I was quite emotionally attached. I expected to look like a mushroom head or that meme of the cat with a lime on it’s head, but surprisingly I love my new hair… I feel more myself than I have in a while so I had definitely outgrown my old style. To make it even better, my hair can now be used to make a wig for a sick child.

On my actual birthday, a friend painted my nails then my family came round to the house for a buffet and a catch up. My Mum made all the food herself and even better, made it all Emily-friendly! Nowadays I’m very used to eating something different to everyone else so it was such a luxury to eat the same as my family. Mum went all out with the buffet (no surprise) which included mini burgers, home made chicken nuggets, mini cheesecakes and even a birthday cake to finish! A few nights later some friends came to celebrate with homemade pizzas and cake which was a lovely end to a very extended birthday. I got some beautiful gifts this year, which included doggo compression socks and almost the entire Lush shop. I can’t explain how grateful I am to all the people who put the effort in to make my birthday so wonderful this year, especially considering I kept forgetting it existed and didn’t expect a fuss.

After a few full-on weeks, my body had well and truly had enough, how dare I have so much fun right? I’d started flagging before my birthday, but I struggled on through (which I would never recommend). I missed my work’s Christmas party and managed to work from bed, but didn’t do much else until a meal out for my friend’s birthday. Honestly I knew I shouldn’t have been going, even if I was on top form, because it wasn’t going to be the most energy-friendly event… but it was a friends birthday, and I’m a stereotypical people-pleaser at heart so I went. People pleasing isn’t great anyway, but it definitely doesn’t go hand in hand with chronic illness!

From here on out I was bed-bound for the rest of 2022, besides trips to the bathroom and a few trips downstairs to celebrate Christmas. My family eats Christmas dinner on Christmas Eve so no one spends their Christmas Day cooking a meal and can relax instead (I would recommend this to anyone who celebrates and wants to pace themselves, or just spread out the festivities). I feel very fortunate that this was only a crash; a quarter of people with M.E. have a severe or very severe case and can spend the remainder of their lives in bed, many missing out on Christmas all together. One of the difficulties I often have in these crashes is keeping up with hygiene, but before eating Christmas dinner with family I decided to prioritise this. I managed to get downstairs for dinner then played some light board games after resting and digesting all the delicious food. I’m sure it won’t come as a surprise to anyone that my Mum made sure I didn’t miss out on any of the food I would usually enjoy! She’s planning to post some of the best recipes from my birthday and the festive period.

On Christmas Day, I literally dragged myself out of bed and slid downstairs (I go down on my bum lol). We opened our presents and I managed with the help of my brother…and a food break in between of course. I got some of my favourite allergen-friendly snacks and some amazing noise-cancelling headphones which are now permanently attached to my head. I slept through the entire day whilst everyone else partook in our usual tradition of getting drunk at the local pub. It was just as well because I can’t drink anymore and my alcohol alternatives can only do so much. I got downstairs later on for buffet food and Christmas TV then that pretty much rounded off my celebrations.

It was hard being so poorly and one of the #MillionsMissing this Christmas and New Year, especially seeing all the amazing highlight reels (particularly my friend’s that I would usually be in). It’s also safe to say I haven’t mastered pacing yet or putting myself first in social situations, but it is something I’ll carry on working at this year in the hope that it’ll become easier. Despite some difficulties, I have had a lovely few months and made some amazing memories that I’ll always treasure.

What now?

• Feeling the overwhelm of the new year? Check out my self-care quickies and read how to start believing that you’re enough
• Watch our bake sale reel
• Watch my hair donation reel
• Watch my hair transformation on TikTok
• Watch my expectations vs. reality reel for 2022