Watching the Wheels…

Watching the wheels churn, which applies figuratively to many things in life. There is the daily grind, the wheel of health, the wheel of public policy, and so on. For those of us with chronic diseases, we have our own “wheel” and this is imbedded in the health care system. Due to the fact that many  diseases need constant monitoring can make you feel like your forever seeing Drs, RNs, dieticians, more Drs and having more and more tests. When you have CKD like myself, there are so many things they want to keep track of: creatinine levels, blood counts/anemia, bone health, Magnesium, calcium levels, phosphates, albumin in blood and urine, plus the numerous special testing they need to do to judge your antibody levels in the transplant work up just to name a few. Then, if you’re real lucky, you will have other diseases that compound this process which necessitates more medications, adjustments, more testing, more treatments which then spits you into a new regime of follow up. It just seem endless!

I remember looking at my calendar one month and I think EVERY day off I had from work I was seeing different Drs, having blood work, or having a treatment in hospital. No wonder I was ready to jump off that wheel of wonderful and have a little “down time”. Crazy! It also made me think of my Dad: he was a minister in the United Church. As a kid, I remember one day walking by and looking at his appointment book. I don’t remember any empty spaces in it for an entire month!! It makes me think of how we just trundle along, doing what we do, not really thinking about the big picture. For me, during the rough patches, I would have to just go one day at a time for to look beyond that, was just too overwhelming. You start to micro-manage and compartmentalize your life.

I just watched a movie trailer called “The Abundance Factor”. The movie brought to light many truths about the lives we chose and what power really do have. The main theme appeared to be that life is what you make it, starting with what you say to yourself every day! So its all in your head!! I’ve always said that attitude is the thing in life that will either serve you well or not. The movie also pointed out that maybe the “norm” is not for you (they talked about the societal belief that you went to school, got high marks so you could get a good job, make good money, etc, etc) and that maybe your happiness doesn’t lie in working yourself and stressing about things that don’t make you happy. This of course doesn’t mean you should caution to the wind and abandon reasonable choices. Living with CKD (as others with other diseases) forces you to come to terms with what you really want out of your life: what is important to you. Some of us still take a while to see this…I was that generation that had it pounded into them that success and happiness are linked. Happiness and success was about achieving status, financial security (actually more than that: it wasn’t enough to be secure, but be very comfortable). Yes, it is important to have some of these means to ensure health, but as I progress in age, diseases, and hopefully wisdom, these things are not so important. That wheel of happiness is not all its cracked up to be. I’ve missed out on sleep, time with family and friends, being able to pursue hobbies like I would like, and develop more of ME.

Being in the CKD wheel also makes you want to stop the madness even if its just for a week. How fantastic it would be to go through a day with NO PILLS to take, no needle pokes, to get a full night’s sleep without stressing that you’re getting enough sleep so you will be on your game the next day at work. Extend that out to a week or even better, a month!!! What a holiday that would be. Recently, there was a change in the amount of protein that I leak through the kidneys so I had to change one of my medication doses (increase) and with that was the request to repeat my labs in a week…Yeah, that didn’t happen. First of all, “repeating my labs” means 3 tubes of blood and urine again for the umpteenth time…for what?? It is a waste of my blood, time, and the dollars  in healthcare to process all the other blood work on there that doesn’t need to be repeated. If they are concerned that I might lose too much potassium, well, I know what that feels like so would just eat a banana or orange or two. No this isn’t optimal and certainly NOT what I would advise a patient, but this is me. I will do the labs, but not for a couple more weeks when I go back to see nephrology in follow up. I just get tired of having to schedule my time and life around lab appointments, work, fun, Dr visits, etc.  I just want to be normal and live the good life!

self portrait one

Walking the fine line.

Grief and loss: something we all are familiar with when a loved one dies. What about the grief and the grieving process those with chronic disease go through? Have you ever been mindful in your own journey with chronic kidney disease (CKD), diabetes, cancer, or COPD?

Being a RN, I am ever aware to screen and have my “spidey sense” up for any signs of depression in my patients with chronic disease, as I know the implications can be significant in their own health management and decision making. Closely related is grief. They can both present with some of the same signs like lack of appetite, disturbed sleep, poor cognition, etc. What if your “normal” is part and parcel of these symptoms/signs? Those of us with CKD experience many symptoms such as decreased appetite, sleep problems, feeling down, backing off from activities or social gathers. However, the reasons are different. Apparently, my “spidey sense” isn’t so keen when it comes to myself. When my counsellor suggested that I am experiencing grief, it was like the proverbial light bulb going off!

light-bulb

When you’re dealing with a chronic disease, you are waking a fine line between what has been and what will be. “Looking backward, you can see everything illness has taken from you or has forced you to relinquish. Ultimately, there’s no going back to the past, and the future is uncertain. Looking forward, you can’t see anything quite clearly (Jackson, 2014).”

There is this constant struggle, for most of us it is probably internal. We think about what life used to be like and being human, we long for that again. Reality has shown us that this is not possible, like having that one last hug, one last dance, one last cup of coffee with that loved one. It is a loss, we all grieve these losses, in our own ways. We may not even know that we are actually grieving. Like myself, I didn’t see that. What the heck?? Who me? What? I’ve been so busy trying manage and micromanage aspects of my life and those around me, that I didn’t even realize the things I was doing was actually related to grieving.

As most are aware, there are 5 stages of grief. Throughout each stage, a common thread of hope emerges: As long as there is life, there is hope. As long as there is hope, there is life. For me, this has resulted in a need/desire/drive to do as much as possible, so as not to have any regrets or feel that I haven’t Lived The Live. I have pushed and done things when I shouldn’t have, but I couldn’t give in: as long as there is life, there is hope… The unfortunate thing I have discovered now, is that this grieving also includes my family. I mean, I knew it was difficult for them and that was another motivator to keep going and be “normal”: I needed to shield them and not burden them. The more I can keep doing, the less stress and less of a burden I am to them, right? I think the worst fear those of us living with a serious chronic disease like CKD, is that we become such a burden or such a “downer” that are loved one(s) walk away. So, we carry on walking that fine line between what was, what is, and the uncertainty of the future.

Although, many health care providers will probably recognize the losses we are experiencing, unfortunately, they probably will be unable to spend the time it takes to discuss your grief and sorrow with you.  Many ill people don’t even realize that the anger, denial, depression, or guilt they experience may be manifestations of complicated grief. This is an excerpt from a great article:

Grief in chronic disease

Walking this fine line is frustrating, maddening, depressing, scary: but it does make you appreciate the good days, the good friends, the good times and in the end, ALL TIME. If nothing else, walking this fine line has taught me many things: appreciation for health, family, and the things in life that are actually important. It has also heighten my sense of needing to bond and have real relationships. In the end, as we have all seen, when you are breathing your last, you don’t want your house, your car, your job: you want a familiar face, a warm embrace and someone to tell you “you’re ok and you’re loved”. That’s it.

I will leave you with my favourite song:

My attitude for life