7:30am – phone alarm gradually drags me out of a restless and unrefreshing sleep. I sit up and check my legs are fully attached, they aren’t so I pop my ankles back where they belong. After a quick stretch I go about my normal routine, getting washed and dressed etc.
Me – ‘Urgh I’ve got killer back ache’
Brain – ‘Maybe we should wear a corset that usually helps!!’
Back – ‘Yeah Lets try that!’
So I lace myself into my underbust corset.. sounds easy but with clumsy morning fingers and dislocating wrists it’s actually pretty difficult.
Back – ‘Yeah this feels good’
Tummy – ‘Oh no this just won’t do, too much pressure to tolerate today.. you better take off the corset’
I un-lace myself, once again battling clumsy fingers and dislocating wrists.
Back – ‘I still hurt you’re going to have to do something’
Brain – ‘What about TENS that usually helps!’
Me – ‘Great idea let’s try that’
I get out my TENS machine and twist and turn in awkward angles to see my own back in the tiny hotel mirror, I eventually manage to get the TENS pads stuck on symmetrically but the batteries are dead in the machine.
Brain – ‘We could go to the spa shop to buy batteries’
Tummy – ‘But I’m hungry and we’d have to skip breakfast to get there before lectures start’
Me – ‘Tummy, if we eat breakfast are you going to digest it?’
Tummy – ‘ … well .. no, probably not’
Me – ‘Ok we’ll get batteries’
Brain – ‘Wait! we have to check out of the hotel before we go’
So I pack up the rest of my belongings while trying not to aggravate my back or lean over. I look from my wheelchair to the wheelie suitcase and realise I simply cannot do this alone. Luckily the hotel staff are used to me and I know they’ll be happy to help.
I check out and leave the hotel folks to fetch my suitcase.
Me – ‘Right its time to go outside are we ready?’
Brain – ‘Yeah lets go outside, it’s cold and I’ll be able to think more clearly’
Hands – ‘No wait! its cold you need gloves on or we’ll turn blue all day’
Back – ‘Haha the gloves are in the bottom of the bag and you can’t reach’
Hands – ‘but we neeeeeeed them’
Me – ‘OK, we need hands to wheel to the shop, without the shop there are no batteries and that means no TENS’
After struggling to reach my gloves I do eventually get underway and after a few minutes of wheeling through drizzle I reach the shop and manage to buy batteries. Batteries means TENS so my back is fairly happy, I kept my gloves on so my hands are still functional, I checked out of the hotel on time and even managed to get to lectures a little bit early.
Student colleague – ‘Hey how you doing today?’
Me – ‘Fine thanks how are you?’
This only takes me to 9am! I still have a full days worth of lectures and a long drive before I’m home and ready for bed.
The reality of life with chronic illnesses and/or variable disabilities is that even when I say I’m fine it doesn’t really mean fine, it just means that I’m coping fairly well with the usual stuff..
Life with complex health problems means thinking about your body pretty much constantly. It’s a series of negotiations between different body parts. What my back likes will aggravate my knees and what suits my autonomic system will aggravate my raynauds.. I don’t always get the balance right but most of the time with a little bit of luck and a lot of planning I can get through the day pretending to be a ‘normal’ human being.
My disability is a lot more visible than it used to be, I use a wheelchair most of the time at university so it’s pretty obvious that my legs don’t work all that well but a lot of the time my inability to walk very far is the least of my worries. The invisible stuff is much harder to deal with, it’s also the stuff that most people aren’t even aware of.
If I wasn’t using a wheelchair would anyone realise I was struggling? makes you think doesn’t it.. Just how many of the people you pass by every day are actually in severe pain or are so tired they are about to fall over?
How many people say ‘fine thanks’ when what they really mean is ‘I wish I was back in bed this is all too much’
Just something to think about as you all go about your daily lives. As always I’d love to hear your comments and please feel free to share.
Ciao for now.