I went over lots of options in my head for this project – there are so many places I wish I could go to! I picked The V&A Museum in London, not just because I miss visiting it now I’m ill, but because I miss the way I visited it too.
I have never lived in London, but I’ve probably visited the museum more than most Londoners! I often went with family or friends – it’s a particularly special place for my Mum, my Australian Aunty and I. I still owe my friend Hannah a trip for her birthday in 2017! For several years my Granny bought me a V&A membership so I could go to the paying exhibitions whenever I wanted – and then tell her all about it. Visiting an exhibition and then chatting over tea & cake in the beautiful cafe was one of my favourite London meetups.
I also visited the museum a lot on my own. Despite being a very sociable person, it’s probably these solo trips I miss the most – I rarely get to do anything outside of my flat by myself now. I used to love popping in on my own after seeing friends elsewhere, or at the end of a busy day of work meetings in London. I once went there straight after a job interview and sat in the garden with my feet in the pond to unwind. It was my little oasis in the city. I used to love the spontaneity of my trips – sometimes I’d head to my favourite spots, like The Daylit Gallery, or the collection of old biscuit tins, Sometimes I’d go to an exhibition, sometimes just to the garden, or shop, or cafe. I rarely planned and just did whatever I fancied at the time – the choice was always completely mine. It’s that freedom to explore by yourself, in a beautiful place, that I really miss – M.E. takes away independence and spontaneity.
Technically, with a lot of planning, luck and money, I could probably get to the V&A. But unless my health dramatically improves, I would never be able to visit like I used to.
I am one of the luckier people with M.E. as I’m affected ‘moderately’ by it. Many are much iller than me. Something that’s ‘moderate’ probably doesn’t sound too bad, but in reality, it means I can rarely leave my flat. I can’t work and I have to plan when I am able to wash my hair. I use a wheelchair for more than a minute or so walking, and I have to plan my days around rests, symptom management and medications. M.E. is also unpredictable. The chances are if I did ever manage to plan a trip, I’d be too unwell to go. If I did make it, my visit would not have the light-hearted spontaneity I crave; I’d have to plan accessible travel, accommodation (I definitely couldn’t do London in a day anymore!) a wheelchair accessible route around the museum, what I’d be able to eat, where would be quiet and not too brightly lit…and I would definitely need someone with me. My brain would quickly turn to mush, and I’d know that I’d have to pay for my time there with being even iller for a long period of time afterwards.
M.E. doesn’t really have much to do with feeling tired – for me it means feeling poisoned, heavy and aching all over; leg muscles that burn like I’ve been for a long run; a frustratingly foggy brain that struggles to find the right words; and a racing heart just from standing up… the list goes on.
None of us knows what life holds for us. I was a pretty normal 28 year old in 2017 when I caught the glandular fever virus that triggered M.E. and changed my life so significantly.
So, take this as an invitation to be spontaneous and explore! If you’re in The V&A at the moment, visit a gallery that you’ve not been to before, join a tour, stop and spend a while with an object that catches your attention, head out into the garden and dip your feet in the water. Have a piece of cake under the twinkling lights in the cafe, and enjoy the beauty that surrounds you.
