M.E. On: Summer FOMO Without The FO

Ah, it's that time of year again. Beautiful blue skies, sun's out, jackets off, sunglasses on, bare legs, sandals, yep even in Scotland, we've had a glorious couple of days (after freezing our bums off recently, but that's British weather for you) and we're all daring to ask "is summer really here?". I hate this time of year though, because I get serious FOMO. I long to be out there enjoying it too. People often say "oh the winter must be so tough on you"...yeah, snuggled up inside with my cosy blanket, the heating on, cups of warm tea and the gigantic chocolate stash whilst it's snowing, icy, windy and freezing outside, errr no, I know where I'd rather be! Yes I dislike the very long dark days, but I have no desire to go out on days like that. I'm usually pretty thankful that I'm safe and warm inside. That said, I'm not a massive summer fan. Last year was far, far too hot for me and I know people in this country are horrified if you dare diss good weather (because it's not often we get it), but it's the truth, I'm no sun-worshipper. I don't cope well in the heat and go out of my way to protect my skin from burning tanning in the sun because of the harm it does. I get tired much more easily in the heat, find everything more taxing when I'm hot, it's difficult to sleep and trying to stay cool becomes my main life mission (bless you Dyson fan, you saved me last year) and I can't focus on anything but that. However, on days like this (it's about 21 outside) or when it's bright, sunny, slightly breezy, but most of all dry, I get serious envy of people revelling in that.

I want to go out and have an ice-cream and just sit somewhere watching the world go by. You don't need to be doing anything, just enjoying your surroundings. I can't though. I can't just go out because the weather is nice, M.E. doesn't work like that. You are still ill regardless of the season or whether it's a special day or not, it just doesn't go away. Often people will ask if I sit out in the garden when it's nice, I can't. I live upstairs all the time now (because I can't manage the stairs on a daily basis), so to get out into the garden would involve tackling the stairs, twice, plus coming in and out however many times for the toilet. It's more walking than I can manage in a day, so I can't do that. It's fear of missing out, without the fear of, you really are missing out. The day becomes like any other, stuck inside the same 4 walls and it wouldn't matter if it was sunny, rain or sleet, it's just another day. You know you should be appreciating the (rare) good weather, but you can't and before you know it, it'll be back to darkness and drizzle. Now I know if I weren't ill, I'd be working, so I couldn't just live out this romantic notion of sunning myself when I feel like it, but walking to and from work when it's nice outside or having lunch al fresco, looking forward to days off and being able to plan things when the weather is dry, is still experiencing it much more than I am right now. If I weren't ill, I'd definitely feel my mood lifted by the nice day outside, don't most people seem chirpier on dry days? Instead, I feel it has the opposite effect. I just feel a bit down and jealous that I can't delight in it too. Plus it seems whenever I do have a scheduled day out, the weather isn't so favourable (intense hailstorm last week, thank you).
Us British folk love to converse about the weather and I know if I do get out that will be the topic of conversation and I'll have to go along with how wonderful it's been to have all this sunshine and dry days, when really I'm feeling the opposite about the situation. I live in a seaside town on the coast, where people literally pay to come here from all around the world, to see our beaches and sites and I have it right on my doorstep, for free, but can't appreciate it.  It's hard, no, near impossible to be living your life to the fullest when you're constantly missing out on things and the simplest of things. I'm sure many people won't consider the 'dark side' of these bright days for those like myself, living with a chronic, debilitating illness.  I'm sure I never gave it a thought before I experienced it for myself.  So if you can get out, enjoy it, no matter how little a time you have in it and just soak up that atmosphere of people being in good moods and all the beautiful flowers out (insects can do one though!) and spare a thought for those that aren't as able.

[These photos were taken just over a year ago on a randomly warm April day.  Mum and I took the wheelchair out, sat at the beach, wandered around the town and tourist spots.  It's not often I get to go out just for the sake of it, as opposed to having to go to a specific place.]

M.E. On are a continuing series of posts aimed at raising awareness of and detailing what it's like living with chronic illness (Myalgic Encephalomyelitis/M.E.) through discussion of a variety of topics. I was diagnosed in 2002 after contracting glandular fever earlier that year. Unless otherwise stated, all opinions and experiences are my own. If there's a specific topic you would like me to cover or you have any questions, please comment below and I'll do my best to address those in future blog posts.