A friend once asked me, knowing that I love to write, "Why don't you write about what it's really like living with a chronic illness?" Of course I've written so much about the disease itself, but I've never written a biographical account of my day-to-day life. I decided that if I was going to do it, it would be my own story, not about my journey to diagnosis, nor my condition in medical detail -- just my own day as seen through my own eyes, in the hopes that others may have some understanding.
I guess the worst aspect of any chronic illness is the impact it has upon yourself and family. Sometimes it's more difficult dealing with the effects it has within your family than coping with the disease itself. On some days I feel selfish and worthless. Family can be a problem, too -- if you have children, their needs come first! So it's not all about coping with the illness itself, it's coping with all that goes with it -- the entourage you might say!
The alarm clock rings, it's 6.30am. My hubby groans and I turn over. "Is it really morning so soon." Fact is I'd only just closed my eyes and the night was gone! Another night of restless sleep. The alarm rings on until it finally stops and my hubby moans again, this time with one leg out of the bed. The duvet slides over my warm body as he climbs out like a Neanderthal man, stretches and yawns and then makes his way downstairs. I don't want to get up although I know inevitably that I have no choice. My daughter is at college with no other means of transport except 'Mum's taxi'. Reluctantly, I slowly begin to climb out of bed, waking my daughter as I do so. "Steph, time to get up." I hear the groan from behind her closed door as I go downstairs to a half-boiling kettle with three empty cups.
It's 7 am. I add instant coffee and pour the hot water into the cups, then make my way into the living room where my hubby is sitting putting on socks and fiddling with the TV remote. "What are you doing today?" he asks.
I reply sarcastically, "Going up Everest before lunch and then -- well nothing much." His silence says it all. In reality I may as well climb Everest -- every day feels that way. My little backpack and layers of clothing resemble Scott of the Antarctic! The only mountain I'll climb today is getting through it! Off to work he goes and I'm on my way to college with my daughter. She's reciting a to do list for me: Washing, Ironing, Can you get, Can you do and can you pick me up at 4.30pm? I nod my head like it's on a spring, her own personal lady in waiting!
Back home -- what a relief. The early morning traffic -- Rat race! 'Mums with Missions' on the school run and stressed out business men late for work. My living room is my sanctuary and the kettle goes on again before my daily chore of hooking myself up to the machine which delivers my nutrition. Of course I wasn't always like that! I could eat, too much I'd say (well you don't get to 168 llbs eating carrots do you)! I'm a mere snippet of my former self these days -- almost half that weight. Still, I consider myself a 'Babe' and don't take that away from me.
Okay! normal life over and I unravel the tubes that connect me to a little battery pack. The bottle of sticky fluid all shook up and looking like vanilla milkshake is ready for me to screw onto the cap of a newly unpacked giving set. Carefully I screw it on remembering the one time a newly qualified nurse failed to do this properly. This stuff is as sticky as honey and not nice when it's poured all over one's head. That's what happened! The nurse set the bottle on a drip stand and pulled the tube -- unfortunately for her, she was stood right under it when the cap came off! It was hard not to laugh but it was one of those situations when you couldn't help yourself. Since then, I've always been careful, but accidents happen and one too many occasions has had me scrubbing the carpet from my neglect. Cap on, bottle in housing, pump connected, tube attached and I'm ready to face the day! Up goes the zip on my little rucksack and away I go.
The weight pulls on my shoulders and the long tube that delivers my feed is wrapped up and stuffed into my pocket. I have to be careful of kinks or else an alarm sounds, usually in the most awkward of situations. Try standing at the cash till of a busy supermarket when you start to go, "Beep--beep!" It's amazing how many people dash into their bags for a mobile phone only to find it's not them at all but a woman with a computerised bag that's about to explode or something -- rather embarrassing, don't you think? Back to my car and I strap it into the seat with a seat belt.
Off I go into town -- it's Tuesday. Tuesday is market day and I'm all for bargains. Today is unusually sunny. I say unusually because I can't think of a day this year when it didn't rain! Then again, the day is young and anything can happen!