Over the weekend I had an experience which reminded me just how much having M.E. can affect every-day life stuff. My parents are about to move house so my husband and I went to Ireland for a couple of days to visit them and so I could say goodbye to the house I grew up in. My flat in Edinburgh is a tiny little place (aren’t most flats in Edinburgh tiny?) so moving from room to room requires only a few footsteps and no stairs.
My parents’ house is considerably bigger and has three floors, so lots of stairs. Even the distance from the kitchen to the downstairs bathroom is bigger than the distance from one side of our flat to the other, and an “oh, I left my glasses in the bedroom” moment requires a feat of athleticism that I barely manage. As a result, I spent the vast majority of the weekend completely out of breath, aching all over and needing random sleeps throughout the day.
I needed to pay serious attention to everything I did, to make sure that I didn’t have to keep climbing stairs or walking from room to room to get the things I needed. For example, when I went downstairs in the morning after getting up, I had to think about whether or not I might need my sweater later in the day and make sure that I had it with me. If I was sitting in the living room and needed a drink, it was usually a case of someone else having to go and get it for me, which feels pretty rotten even when the people you love are happy to help.
I was lucky that when I first became ill, I already lived in a little flat and didn’t need to do anything drastic like moving into a much smaller home or from somewhere with stairs to somewhere all on one level. I didn’t need to start house-hunting alongside coping with an illness and I didn’t need to start viewing flats to try and find somewhere suitable or thinking about packing up all my belongings and shifting them to somewhere else. I didn’t need to move to a different area just to live in a home was accessible to me or suffer the expense of moving on top of the loss of earnings that comes with being unwell and unable to work but not receiving any benefits.
It really made me feel for people who suddenly have to completely uproot themselves and their family to move into somewhere that they can cope with living in, dealing with the often huge expense of doing this, never mind the incredibly stressful ordeal itself. Home is where the heart is and for people with M.E., it’s also where you can get from the kitchen to the bathroom without having to sleep afterwards to recover.
The house my parents are moving to is all on one level, so I’m looking forward to being able to spend our next visit with a bit more awake time!
I don’t go to the cinema very often. This is partly cause it’s bloody expensive and partly cause it just isn’t very comfortable. Cinema seats and my body do not like each other so I tend to be very sore after about 15 minutes of sitting, and generally leave the cinema walking penguin-style cause my back has decided to protest. This does not make for a pleasurable experience and I kind of resent paying quite a bit of money for something that hurts.
When I try to sit up straight in cinema seats, it never works because the angle isn’t right for my back and I end up with frozen legs and lots of pain. I usually end up curling up in the seat (which my very tall husband envies my ability to do) but even then I have to shift around every few minutes to try and stay comfortable, or at least not-completely-uncomfortable. It’s a hassle and it generally eclipses any enjoyment I might experience from watching a good film.
But occasionally it feels worth it just to experience massive explosions and action-type-stuff on a big screen. Last night my husband and I went to see Iron Man 3 at the Vue cinema in the Omni Centre in Edinburgh and I made a wonderful discovery. The arm rests between the seats can be flipped up out of the way! I have no idea if all Vue cinema seats have this feature, or if all cinemas in general have it. To be honest, I just hadn’t tried flipping the arm rests before. I don’t know why I suddenly decided to try it last night. But I did, and it was good.
We went to the 9.30pm showing so there weren’t many other people there, meaning that I had plenty of space to take my shoes off and LIE DOWN! It was amazing! My man-shaped human lap pillow meant that I could prop my head up and watch the film through the space between the seats in front while not having to constantly wiggle around trying to find an angle that allowed me to see the screen and still feel my legs. Also, lying down is much less exhausting than sitting up, and anything that conserves energy is good with me.
So yes, late showings at the Omni Centre have increased comfort potential, which makes me happy. And Iron Man 3 was pretty damn good as well.
Beltane Fire Festival is over and I’ve finally managed to scrub all that epic body paint off my skin. There’s still a bit under my nails that won’t seem to come off no matter what I do, but I’m generally clean and back to my normal colour. I’m now in major recovery mode, which involves not much moving around and lots of sleeping. I have pain in parts of my body I didn’t even know existed and my brain feels like mush, but it’s all wrapped up in a lovely layer of joy and wonder from having been involved in something so amazing with such fantastic people.
Taking part in something as huge as Beltane is utterly and completely exhausting but so totally worth it. It would be easy to file it under things that sick people cannot do but that simply isn’t the case. Yes, my participation is very different from a lot of people’s because I don’t perform, but I’ve found ways to use the skills and abilities that I do have to be a productive volunteer and not just a sick person trying to do something.
I’ve been on the Board of Directors of Beltane Fire Society for the last year and while it has been a truly incredible experience, it has also been intense and all-consuming at times. Ok, most of the time. I’ve made the decision to take a step back and prioritise other things at least for the next year, so as of June I will no longer be on the Board. I’m still going to take part in festivals, but it’ll be in a more manageable capacity that allows me to do things like sleep, rest and take time for myself when I need to.
Even after having M.E. for 8(ish) years, I still find it difficult not to throw myself head first into every exciting thing that comes my way just because I want to. When I first became ill, I didn’t have the option of taking time off and focusing solely on taking care of myself. I did my best to keep things manageable, but without money coming from somewhere else my priority had to be to remain self sufficient and pay my rent and bills, no matter how I felt or how unable I was at any given time to do the things I needed to do.
When I see people online talking about all these ways in which they adjusted their life to make their health their main priority, I feel a spark of envy because I wonder how different things would be for me now if I had been in a situation that would have allowed me to do that. In a way though, having to keep going no matter what has allowed me to retain a part of myself that I’ve always valued – the ability to get through difficult times with a complete (necessary) disregard for the concept of can’t.
Perhaps if I’d had any other option than to keep providing for myself, I would’ve reached a more advanced stage of recovery. If I hadn’t had to focus on work instead of simply getting better, maybe I would’ve actually gotten better. It’s almost easier when you can look back and think of all the things that you should have done differently, but when there’s no other option apart from the one you had at the time, you just accept things the way they are, however tough or frustrating that might be.
It’s not such a bad thing. I know there are lots of other people in the same position as me, other people who fell through the cracks and weren’t afforded the help they needed from the resources that are supposed to be there for that exact reason. It is what it is and perhaps if I had had that help back then, I would’ve lost my sense of absolute determination. And I kind of like that about myself.
It really surprised me when I realised I hadn’t written anything here for over a month. Life has been incredibly busy lately because the charity I volunteer with has a huge festival coming up at the end of April, so it’s all systems go at the moment, leaving very little time or energy for anything else. I’ve been very careful with balancing workloads and making sure that I can keep up with everything without ending up totally out of action and unable to do anything. As much as I hate having to plan every aspect of everything I do in so much detail, doing so makes it possible for me to actually have a life, so it’s worth it.
To escape from all the organising, admin and general intensive stuff-doing, I headed off to a lovely little campsite next to Borthwick Castle (near Gorebridge, outside Edinburgh) on Friday with a bunch of friends for some snow camping. I absolutely adore camping and while it’s frustrating to have to stick to an edited version of my previous outdoors activities (no long hikes, no carrying heavy stuff, short stays only, comfort over adventure), I’m really happy to still be able to get away from the city and enjoy nature.
I was able to park right next to the camping spot so unpacking the car was really easy. To be honest, my husband did most of the stuff-carrying and tent-putting-up, but I carried light things and because the drive there was so short, I wasn’t exhausted by the time we arrived in the early afternoon and was able to actually do things.
We’d been very sensible about packing food, bringing sausages that we’d already cooked at home that just needed to be heated up (less time standing next to the barbeque), flasks of pre-made coffee (no need wait for water to boil outside) and various things that could be munched on without cooking. It was all very low-effort, which was great. Because of the weather (below zero temperatures!), I wore numerous layers of clothes, including two hats and, snuggled up by the fire with everyone else, stayed toasty warm and comfortable all night.
As there were quite a few of us there, any work needing done, like collecting fallen wood to burn and setting up the fire pit, was shared between everyone. This meant that I was able to really be involved in what was going on rather than sitting there feeling a bit crap watching other people work.
Sharing a tent with my husband, AKA the human hot water bottle, and having a decent quality air bed to sleep on meant that when we did finally crawl into bed, sleeping wasn’t a painful experience. Gone are the days of just a sleeping bag and ground mat if I still want to be able to walk the next morning! I woke up at 7am to see a stunning blanket of snow covering the entire field, tents and everything, and wrapped up in my gigantic all-weather coat I got to enjoy a truly magical moment of beauty and silence, alone with a frozen world.
We came home the next afternoon because even though we wanted to stay for another night, it just wasn’t practical. I slept for 13 hours last night and woke up feeling like I’d been run over. Getting out of bed took quite a bit of time and a lot of help, and today has been spent on the couch with minimal movement and lots of lying-down breaks between short periods of sitting up, but I’m feeling alright. I’ve kept the lights low, the tv quiet and the brightness on my laptop screen turned down so life is calm and gentle – perfect for recovery.
I’m under no illusion that I’ll jump out of bed tomorrow feeling fantastic. It doesn’t work that way. I’ll probably feel pretty rough for the next week or so, so I’ve planned everything around allowing that to run its course. I’m giving a talk about photography tomorrow evening, so I’ll be out for a couple of hours then, and I have a meeting for another couple of hours on Tuesday evening, but after that it’s just work-at-home and early nights for the rest of the week.
Times like this make me feel kind of emotional because they serve as a reminder that I still have so much in my life and so many opportunities to get excited, be happy and share experiences with amazing people. One of the girls I was camping with also has a chronic illness and we were talking about how being sick doesn’t mean that your life is over, or that you never get to have fun or do the things you love. It was such a delight to meet someone else with an attitude similar to mine, and to have had that conversation while breaking up a pile of wood for the fire!