Sunday, 14 September 2014

There are many types of superhero

You are a multitasking superhero, highly trained in the art of doing a hundred things at once. You thrive on adrenaline, zooming from one place to the next, late for everything and mind already on the next task. You have a busy job that you love, you give it everything and leave from work later and later each day in order to give it your very best. You rush home to make the dinner every day, eating on the go sometimes so as not to be late for your orchestra, netball game or meeting your friends for a drink. Somehow, amongst all this you manage to keep the house intact, have a conversation with your husband and even give the cat a quick pet on the way out the door.

One day this all stops. You cannot even get out of bed to go to the loo, never mind going to work. You are no longer a superhero. Or are you?

Being sick long term is bloomin hard work. You can't clock ofF at the end of the day, the nights are often harder than the days.  You battle daily symptoms and you are never sure what to expect each day. It could be heart problems and a temperature one day with swollen glands and flu-like symptoms, the next day might be pain, stomach and bladder problems and headaches. The next day could be a migraine, shortness of breath and chest pain, then the next day might be extreme sensitivity to light, palpitations, pain, seizures and blackouts. If you're like many M.E sufferers, you might have all of these symptoms at the same time.

At my worst I couldn't sit up in bed. I couldn't talk, chew, go to the toilet by myself, have a shower or bath (my one great love... mmmmm.... baths...), brush my hair or get dressed. I couldn't watch telly (too stimulating), read a book or even do a simple puzzle. I just had to lie there. So you can imagine how appreciative you become of the 'little things'. Making a slice of toast and cup of tea, having a shower by yourself (just unfortunate that you forgot to take your pyjamas off, such was the concentration required to get in and turn the water on),  blow drying your hair, phoning a friend.

This is the real superhero stuff right here.

Then there is the admin. Sick notes from the doctor, prescriptions, appointments, different drugs and side effects, coping with disbelief,  attending work absence meetings. Managing the GP, paperwork for blue badge, benefits, assessments, applications, sorting out mobility aids, household aids, arranging carers. Each of these things is a mountain to climb with the brain fog and fatigue of M.E.

And the emotions.... The feeling of loss, grief, mourning for your old life.  Loss of 'friends' who don't or won't understand. Boredom, frustration, constant feeling of guilt about inconveniencing everyone who's caring for you or cancelling arrangements at the last minute, the worry and fear about the future. Coping with the lack of medical research and disbelief from the people who are supposed to help you.

So-  flying? Fighting baddies? Spidey senses? Nah. If you can manage to survive as an M.E sufferer for even one day, you are a superhero. Just remember not to wear your pyjamas in the shower.

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