Monday, 13 April 2015
How the other half live.
Lying on my side I could feel the hard tiles under my shoulder and hip. Poor absorption of food for years on end has left me with little padding on the tender bones that poke out. I could take out an eye with the knob of bone sticking sharply from my elbow or the pointy bit of sternum that sticks out just above the ever present pulse that spasms and bounces. And here I was again, communing with the short and curlies, dust, and ever present Freyja hair on my grey terry toweling bath mat. At least this time it wasn't through collapsing limbs or plummeting blood pressure. Though when I say "At least" what I really mean is a long line of expletives stretching off into the distance, far beyond the dusty underside of my bed, that I can see through the doorway of the ensuite.
I try to find a more comfortable position but no matter how I brace my body it all hurts. The green and white box in front of me has two delightfully bizarre yoga positions to choose from. Bum up or on my side. Put one leg here, another over there. Bend this bit and that. I wonder if I simply adopt Child's pose, can I cry "Mummy!" Physical comfort is further pushed down as I contemplate the process ahead. If I had any muscle strength left my nether regions would be bracing right about now.
Delay. Delay. Double check the box. Close my eyes and think happy thoughts. But no amount of puppies and kittens is going to help. No happy place is to be found. But the pain in my abdomen begs "Do it. Please just do it." A desperate rock hard abdomen is hard to argue with. So I don the gloves, lube up the applicator and resign myself to the inevitable.
I lie on the tiles as I wait for the contents of the bottle to work. It's been over a week since I last went. I have taken a laundry list of medications to get things moving. I employed all the maneuvers given by the local continence nurses. I watched the videos and studied the leaflets. I "moo" like a cow while bent in two, feet up on an overturned basket. And still nothing. Things go in but they never come out. My gut the Bermuda Triangle. And so I had to cry uncle and go from softeners and suppositories to the big guns, the enema. Stories of people so impacted they vomit up poo a good incentive to forego any last remnants of dignity.
1 in 2 people live with chronic illness. In disorders like Dysautonomia continence is a hidden issue. An unpalatable issue, but a common one all the same. When I hear people say all I need is a positive attitude I wonder if they could be all Pollyanna as they stick a tube up their bum and squeeze fluid up into the dark recesses of their body. Or when they have to explain the intimate details of their bowel and bladder habits to strangers. Or when they have to see a physiotherapist to learn how to poo again. Or when they have to consider more medications and stimulators and flushing and......all so they can do the most basic of bodily functions.
The nausea, the pain, the worries about malnutrition. They are part of life now. But it is hidden from sight. I went for bloods and the nurse said I looked great. Then she looked at my sour face and mumbled that she guessed I didn't come in when I was really unwell. And that's the problem. So much is hidden from public view. And so many don't want to know.
You see chronic illness isn't something you simply positive your way out of. It's not a question of attitude. It is learning to manage sometimes incredibly confronting and unpalatable symptoms and their equally confronting and unpalatable solutions, or partial solutions as the case may be. If reading this makes you feel uncomfortable, imagine what it is like to live with it every day. To have use suppositories and enemas because there is no alternative. A reader can stop reading. They can turn away and forget. For those of us living with chronic illness there is no choice. We must live with the unpalatable. We don't have the luxury to turn away and pretend it's not happening.
"I could never do that!"
Actually you can. You do what you have to do. You do things you never thought you could. Because there is no choice. It is simply life.
Those of us that live with complex chronic illness and disability are well aware of just what we have to do. What we can do. We do it and we get on with life.
And today I up my dose as it all starts to slow once more. And I talk to my nurse and I break out the gloves. And contemplate another day spent lying on the tiles.
If you have problems with continence there are people who can help. Contact the Continence Foundation of Australia for more information on how to locate a clinic or practitioner. There are also links to videos for pelvic floor exercises and helpful tips. There is even a toilet map app which I reviewed here. Continence issues can affect anyone at any age. Don't suffer in silence, seek help and guidance. You are not alone and you don't have to be embarrassed. There are similar organisations in most Western countries.