This is the first of what I intend to be a series of blogs about every-day experiences which are totally shat upon by having M.E.

This is not written to garner sympathy or to whine about my terrible life (cause my life isn’t terrible). It is written to perhaps open a few eyes a little wider and encourage people to be thoughtful towards friends who have chronic invisible illnesses.

It is also written for those of you out there who have the chronic invisible illnesses. It makes my day when I read about someone else’s experiences and realise Hey! I can relate! I hope I can give a little bit of that to some of you. Maybe we can have a giggle together, connected for a moment through the ether.

So, a night out with M.E…

First of all, there’s getting ready. A shower involves standing up for at least 3 minutes (usually longer), leaning down to wash your feet and legs and closing your eyes at least for part of the time to wash and rinse your hair. Standing up with eyes closed is not easy when standing up itself is making you feel sick and dizzy.

Then there’s shaving your legs, almost always a night-before activity because it involves way too much leaning down and putting sharp things on your skin to risk doing it at a time when dizziness might be more likely.

Washing your hair isn’t too bad. Drying and styling is not only difficult but can result in injury. Holding a blow-dryer up above your head can be beyond uncomfortable, setting off arm cramps and possibly a couple of bruises when your arm decides it isn’t going do what you want it to do and the blow-dryer drops on your head. I just did that, like 5 minutes ago. It hurts.

Straightening or curling irons add another few minutes (at least) to the time your arm has to hold something up above your head. Dropping a set of GHDs at their maximum temperature on your head or bare legs sucks. I am beginning to embrace having curly hair instead of risking injury by frequently straightening it. It actually looks pretty damn good curly.

Make-up actually isn’t too much of a hassle, providing that I’m not too run down because being too run down results in my skin spontaneously becoming allergic to anything that comes close to it. I rarely wear mascara these days because the weight of it on my eyelashes makes it hard to keep my eyes open. Yes, seriously.

But the joys of brightly coloured eyeshadow (Urban Decay = awesome!) are many, providing you can use eye make-up remover later without your eyes stinging and burning. This is not possible very often.

Getting dressed. Choosing an outfit is often a night-before activity for me because the act of getting dressed once is exhausting enough, never mind having to do it a whole heap of times to see what looks good together. Because of this, I have safe outfits that I know look alright and are comfortable.

Getting to where you’re going. Walking is out. Getting a taxi is nice, but usually too expensive. Catching the bus is probably out too, because walking to the bus stop guarantees a painful and sweaty (ick!) start to the night. So I usually drive.

Arriving at the venue, there’s finding a seat because standing up for any length of time is obviously out. Finding a seat is not the same as finding a seat that won’t result in an aching back and losing the feeling in your legs. Cinemas share this issue, but I’m not going there this time around.

So you maybe get to sit down and you maybe get to sit down in a seat that doesn’t cause too much discomfort. If you drove, you’re on soft drinks all night and even people who know you well, know that you have M.E. and know that you drove to the bar will still keep asking if you want a drink. Those with less tact will ask (often repeatedly) why you aren’t drinking. This isn’t too bad when it comes from strangers, but really sucks when it comes from people who supposedly know you well.

But maybe you had enough money to get a taxi to the bar. Drinking any more than one or maybe two drinks is out, if you can drink at all, because a) alcohol and medication don’t mix well, b) a body that is already exhausted and sore doesn’t appreciate the addition of another substance for it to deal with and c) the recovery time usually makes drinking totally not worth it.

Dancing is not likely. Walking from your seat to the toilets is awkward, especially if you’re not very mobile to start with. A supportive arm from a significant other or helpful friend is totally do-able walking from the car to the bar, but not so convenient to help you fight your way through drunken crowds to drain the tanks. If there are stairs involved, add about 200 difficulty and pain points. Add another hundred or so if you are walking with a stick or crutch.

Getting home. Walking is obviously out. Getting the bus is probably out too, unless the night bus departs from right outside the bar you were in and drops you off at your own front door. Getting a taxi may or may not be possible, depending on what time it is and how much money you have. Leaving early generally makes it easier to get a taxi.

Home. Yay! Often the relief of arriving home far outweighs any positivity in the experience of being out in the first place. Get undressed and changed into comfy clothes or pyjamas isn’t too difficult, or can at least be done slowly, while seated. Making some food may or may not be possible. Go to bed.

Wake up the next day after about 14 hours of sleep broken by pain in your legs and feet from walking, pain in your back from sitting, pain in everything else from the exertion of being upright and sociable the night before. My brain takes at least a day or two to get over even a sedate night out. My body takes almost a week.

Next M.E. and my life will probably be about sex.

Admit it. You can’t wait.