A day in the life of me…

What a complicated bedtime routine I have.  I seem to have forgotten what it was like, to just decide, its time for bed, brush my teeth, go to the loo, and gracefully stroll from the bathroom to the bedroom, in my night gown.  Something we take for granted, shouldn’t really take much thinking about or planning in advance to get into bed and fall asleep.  I mean, all we have to do is remove our clothing, and step into bed.  Simple right?

Well,  its not so such a straight forward and uncomplicated task for me.  From the minute that thought, ‘im tired, its bed time’ creeps into my thoughts, there follows, a very carefully choreographed routine, that can take up to 30 minutes to carry out, on a good night.  Of course, it doesn’t always go to plan.

I try to avoid charging up my power chair overnight, but sometimes it is unavoidable.  Last night was one of those nights.  Now, whoever designs these wheelchairs, just cannot understand what it is like to have other bits of your body that don’t function to full capacity.  Its not just the legs, other bits get affected by muscle wasting diseases too.  But it is obvious to me, that these designers and engineers are fully able bodied people, who seem to believe, that people who need wheelchairs, only do so because their legs are useless.  For example, my indoor chair can only be charged up if I can reach the charger point, which, on this model, is situated under the arm rest.  So, to access this point, I need to remove myself from the wheelchair, to sit on the bed, lift the arm rest, attach the USB plug into the tiny little slot.  So, with the lead in one hand, my free hand drives me to the parking spot next to my bed.  I huff and puff as I transfer myself to the bed, not letting go of the lead. Which is difficult when I need both hands to pull myself out of my chair using the bed bar.  This is where teeth are a most useful tool to rely upon.  As long as you don’t drool of course, that could cause a nasty shock when drool meets live charger.  Though im not a drooler, my saliva is under control, unlike many other possible leakage bits, but we wont get into that bit just yet.  Fumbling about in the dark with the USB lead (im a moth phobe, so like to keep the lights off at night).  I then have to pull myself up to standing and turn around, to enable me to crawl up onto the bed, using the bars to pull up on, I bring the bed down to knee height, as I get one knee on the bed, swing up the other one, now im stuck on all fours till I get enough breath for the next stage.  But im on the bed, im halfway there.  Lets just hope I haven’t forgotten to turn off the heating, feed the cat, pick up my phone, have a full bottle of water to take my meds with.  I mean, should I be stupid enough to forget any of those little tasks, then I have to repeat the whole process again.  Of course tonight, it was my phone that I had left in the kitchen, my wheelchair is charging, so I have to unplug it before I can sit back in my wheelchair to get my phone from the kitchen.  Yes, that’s right, re-read this whole paragraph again, but stop when I get halfway into bed, its ok, iv got my phone now and im back in doggie position, gasping for breath as midnight approaches.

My next task is to reach for my bipap mask, which is located on a hook, at the end of my headboard.  Before I attach it to my face, I need to stick a plaster across the top of my nose, because the mask cuts into my skin, then I need to take the mask out of the cover, wipe it with a surgical wipe, untangle the Velcro fastenings, pop it over my head and get into reading position.  I like to read or play word games before I fall asleep.

Oh shit, stop right there, rewind here, I cant reach my box of plasters.  The grab stick I keep at the side of the bed, is over the other side of the room, on the table.  Off we go again.

Ok, made it back.  Though it takes three attempts to open an individually packed sticking plaster.  Why make them so difficult to tear open?  Its worse than those little sachets of vinegar you get with your pub meal.  Shall I get out of bed and get some scissors, fuck that, im done for tonight.

So, im finally settled, bed adjusted to comfort position, cat sleeping at my feet, kindle on for a little bedtime reading, and then I rest my head upon the pillow to sleep.  In doing so, I dislodge my mask, and a gust of ice cold air, hits me right in the eye.  I try to adjust it as quick as I can, im leaking valuable air here.  But in the rush, fumbling around in the dark, I seem to have torn the silicone seal with my nails.  By now, I have uttered every obscenity that exists in the English dictionary and beyond, yes, im well pissed off.  I have to adjust the bed again, to sit me up, lower me close enough to the floor and grab the bag under the bed with spare masks in.  Right, sorted, places head back on pillow around 2.00 in the morning.

4.30, I need a pee.  Yup, here we go again, a night in the life of me.