Tonight I'm not feeling well. My lower back hurts, and my abdomen feels like someone is grabbing it and twisting. I walk doubled over into the bathroom, sitting with my Word Seek book trying to ignore the pain and hoping it passes soon. I have a routine for these times - grab my water, my chapstick, a blanket, slippers, sometimes a pillow, and hunker down. The Word Seek books I keep next to the toilet to keep my mind off the pain. It helps. I don't know why, but it does. I find this routine soothing somehow, because so far it has got me through every time alive, so now I've developed a superstition about it. Like sports players not washing their jerseys...but I think I smell better.
This current flare is the result of not taking my full meds last weekend. I only managed two meals a day so I was down a dose for three days in a row. Not good. My interstitial cystitis acted up first - starting with the feeling like I have to pee every few minutes. Annoying, and painful. Then the costochondritis flared up. This came on about 4am on Tuesday with a pain under my left armpit. It's sharp like a knife being plunged into my ribs, then fades, then I relax, then it comes back again. This lasted about 24 hours. Now, the ulcerative colitis. And, all of this causes fatigue. I want to just curl up in my bed, heated blanket on, soft pillows surrounding me, and disappear for a while. I want to lock the world out, my responsibilities out, and just sleep until I feel better. I don't have that luxury being a single parent, but I can pretend I do in my mind which helps a little bit.
Pain is something all of us have in our lives in one form or another. I have a certain amount of chronic pain that is constantly with me, which I hardly think of as pain anymore. Then I have this kind of pain - the pain of the flare up. I wonder how others out there deal with their pain? What works for you?
I often get asked what others can do for me. Most of the time, I really just want to be left alone. I need to go into my mind to deal with it. Maybe bring me my water, tell me you're there if I need you, and then leave me until I get through it. It's not callous, and there's nothing really you can help with. Just knowing you care is what I need, that's all.
Well, back to the bathroom.....
Saturday, March 19, 2011
Friday, March 18, 2011
La da da da life goes on: Chronic Illness and Perspective
March. So far this month has brought some momentous changes in the world - namely, the earthquake, tsunami, and nuclear emergency in Japan. The little things we deal with day to day pale in comparison to this tragedy. And, I'm sure somewhere over there are people dealing with chronic and terminal illnesses who just had their entire world turned upside down on top of it. It's all perspective. What most of the rest of us are dealing with is teensy by comparison.
Perspective. Recently a friend of my son's came to live with us. He was kicked out of his house so I opened my home to him. It's someone my son has known for a number of years. His mom, who is also a single parent like me, was diagnosed last year with breast cancer and just finished her treatment; she has some kind of liver involvement now they are researching, and will find out in a few weeks if the treatment worked. It had spread to 7 of 9 lymph nodes. They also have have a very difficult home and financial situation outside of dealing with a significant health situation. And, whether it's something wrong with her brain from the cancer or the treatment, she is treating him horribly. I don't mean this in an even remotely light way. I feel sick and immensely sad about the things she has said and done to him. I try to tell him that it's probably because she's sick that this is happening. It still doesn't make it right nor excuse the behavior, but maybe it gives a reason for it. It's hard enough as adults for us to deal with someone we love treating us horribly, let alone a teenager who has yet to develop all the skills we learn as we get older in dealing with this kind of situation. Right now we are just going day to day. I don't know how long he'll be with us, but keeping him safe and stable, and giving him support, is the least I can do.
So a new journey begins for me, raising two boys, and doing everything I can to stay healthy in the meantime by managing my illness so I can be there for them. And, remaining aware that what I'm dealing with is the smallest of potatoes compared to the rest of the world.
Perspective. Recently a friend of my son's came to live with us. He was kicked out of his house so I opened my home to him. It's someone my son has known for a number of years. His mom, who is also a single parent like me, was diagnosed last year with breast cancer and just finished her treatment; she has some kind of liver involvement now they are researching, and will find out in a few weeks if the treatment worked. It had spread to 7 of 9 lymph nodes. They also have have a very difficult home and financial situation outside of dealing with a significant health situation. And, whether it's something wrong with her brain from the cancer or the treatment, she is treating him horribly. I don't mean this in an even remotely light way. I feel sick and immensely sad about the things she has said and done to him. I try to tell him that it's probably because she's sick that this is happening. It still doesn't make it right nor excuse the behavior, but maybe it gives a reason for it. It's hard enough as adults for us to deal with someone we love treating us horribly, let alone a teenager who has yet to develop all the skills we learn as we get older in dealing with this kind of situation. Right now we are just going day to day. I don't know how long he'll be with us, but keeping him safe and stable, and giving him support, is the least I can do.
So a new journey begins for me, raising two boys, and doing everything I can to stay healthy in the meantime by managing my illness so I can be there for them. And, remaining aware that what I'm dealing with is the smallest of potatoes compared to the rest of the world.
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