Boxes.
I have tonnes of them.
So many, I could open my own little shop and sell them. I reckon there might be a market for it. The homeless, for one. People moving house. Children who always prefer the packaging to the actual toy.
"Parents - this christmas, save some money and give the kids what they really want - a nifty set of boxes"
The source of these pesky items in my life is a company called Baxter. They supply all the dialysis equipment and fluid needed by Brendan and they arrive at my place every two weeks to deposit another mountain of boxes in the space most normal people would reserve for a dressing table or a wardrobe or a cardboard cutout of Barack Obama.
I have long since prophesised that if Kidney Disease doesn't kill me, I will probably die as a result of a box accident. One day, I'll go to drag one of them from the stack in the spare room and they'll all come tumbling down on top of me.
Each box weighs approximately 20lbs and just after delivery there would be approximately 35 of these neatly piled in one corner, so it wouldn't take much to knock the breath out of my lungs and do me in.
"Here lies Regina - her kidneys failed, but in the end, it was re-enforced cardboard that killed her. RIP".
Hello, Regina. My name is Michelle aka MooseMom. I participate on a site called "Ihatedialysis.com", and it was on that site that just a few minutes ago, I read your article from The Irish Times. I am not as young as you are, but many of the sentiments you described are very familiar to me. I have had CKD for almost 20 years, and now my kidneys are starting to fail to the point that I have to get ready for dialysis; I already have my fistula for hemodialysis, which I plan to do at home. Like you, I am awaiting a transplant. Well, I have just two tests left in order to get on the list, but I know what it is like to put your life on hold.
ReplyDeleteI particularly understand what a uniquely isolating circumstance dialysis can be. You sounded so angry and bitter in your article, just like me. I came across the ihatedialysis website and have found the people there to be ever so kind, knowledgable and supportive. There is nothing like being surrounded by real live friends and family who will help you through the bad times, but when you need to talk at 3AM and no one else is awake, perhaps you could come by and say hello; there are many people on PD who know exactly how you feel.
I wish you all the very best and hope you get a kidney very soon. It is easy to get overwhelmed and to put your life on hold, but if you can find one little thing each day that brings you some pleasure, you may find the wait more bearable. I've thought about this a lot, and it is my humble opinion that there are few illnesses that are more devastating than incurable CKD. And even if it is true that other people may have it worse than you do, I doubt that that fact brings you much solace.
Take care of yourself. Enjoy your life. It may not be the same as it used to be, but it is still yours.
I was 1,000th hit on your blog ... where the hell are the balloons and ticker-tape? Jeez, I would've been happy enough with a sprinkling of volcanic ash!
ReplyDeleteMichelle - I am familiar with ihatedialysis and I have visited it many times to find answers to questions and just to hear people rant about the same issues I have. It does bring some comfort to know I'm not alone!
ReplyDeleteI am sorry to hear you're about to start dialysis. For me, settling into a routine of hooking up to a machine every day was worse than actually hearing from the doctor that I had CKD.
Most important thing to try and do is not let it take over your life and try to keep things as normal as possible. Easier said than done, I know.
Let's hope we both get a new kidney sooner rather than later x
Milo Shaper - I know you to be a shy type who would be mortified at any fuss being made over you, so instead of a parade, I've organised a day out at the zoo for you...
I have nightmares about being hooked up to a machine; I know that that will be the worst day of my life so far...my first day on dialysis. In that, I agree with you, and that's why we are jumping through all the hoops to get on the waiting list.
ReplyDeleteDo you have good support in your real life? I'm sure you have tons of friend who care about you, but do you think they really understand what you are going through? What helps you most to get through your days?
Hi Michelle - for me, the worst moment was seeing my tummy for the first time after the tube was implanted. It was in the hospital, they had to change my dressings a few days after the surgery and there it was. I cried and cried that day.
ReplyDeleteStarting dialysis was no fun either. It's a strange relationship you have with it. It is keeping you alive, but it is such a pain in the eye, you just resent it.
I don't have a huge amount of support. I don't like to worry my family with it and your friends will never understand what you're dealing with.
People have their own stuff to deal with and I guess the fact you look the same and aren't in a sick bed all day every day makes them almost forget that you're actually having a difficult time of it.
What gets me through the days? Walk, run when you can, and dance! Honestly, I put on music when I'm feeling sad and dance. And I think about all the things I'll do after my transplant.
I hope this helps you!