Brain fog, intention tremor, headaches, spasms, digestion problems, muscle aches, blurred vision, double vision, stiff joints, dizziness, PEM, nausea, sore throat, heart palpitations, light and sound sensitivity…
A normal day in the life of M.E.
These are the symptoms that doctors talk about, but what affect does that actually have on our lives? Want to go for a walk? Hope you’re ready to spend a few hours (or days) lying down afterwards. You have a job? Guess you’re sacrificing evenings and weekends to staying in bed then. Keen to go catch up with friends for coffee? Get ready for the headache and blurred vision that’s about to follow… There are just so many things that were once taken for granted that now require careful planning and consideration. Here are a few of the most daily inconveniences that I have found on my Chronic Illness journey –
THE PROBLEM. Showering daily is an absolute luxury. Yep, I said it. No exaggeration, showering is one of the hardest daily tasks – the problem with the shower is that not only do you have to stand in a small, confined space with a slippery floor and only cold walls to lean on, you also have to deal with temperature. Nothing drains energy faster than consistent heat. Did I mention how physically active showering is? Arms up, arms down, arms up, arms down, arms up… you get the point.
THE SOLUTION. Simple. Don’t shower daily. It sounds awful doesn’t it? but honestly, if it’s a choice between showering and making it to work there are plenty of other ways to keep personal hygiene up with out having to stand in a shower for 10 minutes.
2. Drying hair
THE PROBLEM. Tired arms REALLY do not like being lifted above the shoulders. Actually, scrap that, they don’t like being lifted at all. What’s worse than lifting them? Holding something in your hands at the same time. What’s even worse than that? Actually having to wave it around a bit, oh and the stupid cord that’s attached and limits movement. Oh, and you just had that shower that I mentioned above… Okay, I’ll admit it. I bring this problem upon myself. My hair is long and incredibly thick – I know cutting it short would make my life much, much easier but there is just absolutely no way I am cutting my hair short.
THE SOLUTION. My partner. I wish I was joking. More often than not my partner will dry my hair for me. I hate that I rely on him for such a simple task but leaving my hair to dry naturally in the winter months can lead to me getting pretty sick. I also only wash my hair once or twice a week to limit the need for drying it.
THE PROBLEM. Not just being able to eat whatever, whenever, but also just the desire to eat. Eating before 9am is totally out of the question (for reference I start work at 7am so that’s two solid hours into my work day). WANTING to eat before 10am is rare and don’t get me started on the fear of eating certain things because they are the items that sporadically, when they feel like it, but not often enough to actually pinpoint, cause digestion issues.
THE SOLUTION. Perseverance and scheduling. I eat at the same time every day if I can so that it’s developed as a habit. That way it doesn’t matter if I REALLY don’t feel like it one day – habit will lead me to eat anyway. If I’m not hungry I have to try, this mostly relates to breakfast when I need the energy, I tend to think that if I’m not in the mood for dinner it isn’t going to matter anyway – I’m only going to sleep after all.
4. Getting up
THE PROBLEM. Dizziness, exhaustion, inability to open eyes, and legs that feel like they’ve been set in concrete are just a few reasons why getting up can take much longer for someone who is chronically ill. Waking up can be even slower again. Anything involving brain power can feel like a marathon be it as simple as choosing what clothes to wear and working out how to get them on.
THE SOLUTION. Partner to the rescue… AGAIN. I set a lot of alarms, starting a long way before I actually have to open my eyes and I turn lights on well before I need to get up. This helps drag the process out a little and lets me wake up at my own pace. My partner is also absolutely amazing and will often get up and start preparing the things I need so I don’t have to.
THE PROBLEM. This is a reference to brain fog I suppose. If you haven’t experienced it… imagine you are in a foreign country where you don’t speak the language. No, you’re on a foreign PLANET where you don’t speak the language and you have absolutely no idea how they live their lives. Five different people are talking to you, quickly, about different things, in that language you don’t speak and they’re all waiting expectantly for your responses. So you put your slippers on your hands and your keys in the fridge and wish them all a Birthday Happy. That’s brain fog.
THE SOLUTION. Notes, notes and more notes. I write EVERYTHING down. I keep a journal by my bed, a notebook in my handbag and a printed out to-do list on my desk at work. Even my phone is full of checklists.
It’s easy to take things for granted when they’ve never been a challenge. They’ve always been there and in some cases, you don’t even realise that you are doing them. When they are taken away from you suddenly it can feel like your world has been ripped out from under you. I’ve learnt to find humour in my struggles (I think it’s one of those things where you laugh or you cry) but until not all that long ago (and even now if you catch me on a particularly hard day) the tears were what prevailed. Everyone copes with this stuff differently but it can be amazing to look back and see what adjustments you’ve made in your life to help you cope with something (not necessarily illness!) when you once thought you’d never be able to get through. We are humans are much more hardy than we think!
I’d love to hear what some of the things you have had to work around or change in your life that you once took for granted are! Let me know in the comments 🙂