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

 

Life is for living.

Life is for the living. Absolutely. I don’t know about others, but I know when I was told I had chronic kidney disease I thought I could manage with the help of the Drs and by following all “the rules”.  In the early period, I was in hospital for about 2 1/2 months. I remember being very weak, very edematous, had lost muscle mass because of the amount of protein I had lost through the kidneys. I remember having to take a large dose of prednisone because that was the treatment for gross proteinuria. In case you are not aware, prednisone is a catabolic steroid, which means it “breaks down” things in your body. You are also left with the ol’ “moon face” look which is not too becoming: think puffy face, abdomen that looks pregnant, arms that look like sticks, and legs that are so swollen walking is a real effort and your feet are painful. There is so much fluid in your body that you can’t even finish a sentence without being short of breath.

I had gone from a healthy, young new mom and capable RN used to caring for others (helping them out of bed, helping them off the toilet, helping them wash and dress) to being one of them. “Them” meaning those that needed care and help, those too weak or too sick to manage on their own. How wrong did that feel?? This was the first time I thought I might die. I remember laying in my hospital bed at night with tears rolling down my face and talking to God. I told him that if this was my time to die, I wasn’t too impressed given the fact that I have a little girl to raise. That little bundle of joy that I had waited and longed for, may not be mine to raise. “If this is your will, you suck!” Yup, I said it: in the dark, alone, scared and struggling to breath.

All of this transpired over a short three weeks. I remember thinking: ” damn it! I made it through an entire pregnancy with no stretch marks!” Now, in three weeks, I had gained enough fluid to necessitate the wearing of maternity clothes again. I guess that was a bit of a blessing, because when I went out, people just automatically thought I was pregnant and would smile at me…little did they know I was in a battle. When I went home, I was determined to look after myself and my new baby girl! Even though it would take me at least half an hour to shower and get dressed, I was determined to do it. I had to sit in the shower, and washing my hair was a real effort and I easily tired and was short of breath. I had to lay on the bathroom floor for a while after the shower to recoup before dressing. Quite the change for something we take for granted and it being such a basic need. But it did give me insight into how my patients feel when they are totally vulnerable while I assist them to get showed/bathed and dressed.

Ah but for the love of family and friends! When my feet were so swollen that I couldn’t wear any of my shoes, a friend and fellow RN brought me these wonderful knit slippers which a remember with fondness, appreciation and love. My mom travelled to my home to help care for my daughter, as she was one year and I was still too weak to pick her up.

moon face-1

You just can’t get through something like this without the support and love of friends and family. It is with their caring and love that I am able to have a somewhat “normal” life and have the privilege of living life to the best of my abilities. I have been fortunate to stay in shape, eat the right foods (for the most part…), manage my job, family, social life, and even travel to many wonderful places on this planet. But, trying to live life to the fullest takes its toll. Above all, we have to remember that this chronic disease we are battling, is also a battle that our friends and family share with us. They are affected as well. As the saying and song goes: No man is an island.

No matter how good or bad you think your life is, wake up and be thankful for life: Someone somewhere is fighting to survive.”

 

 

 

Understanding.

Understanding, what does that really mean? I actually looked it up just out of curiosity because everyone knows what it means to “understand” something or someone, right? Maybe not. Here is a definition from a dictionary: “the ability to understand something; comprehend”. Yup, that sounds right. However, when I looked at this my immediate thought was that there IS a difference between understanding and comprehending. In retrospect, when I was first diagnosed with kidney disease ( being at the hospital with a nephrologist who gave me the facts, after all, I was a RN and was capable of understanding), I took the new information in. Yes, I understood all about chronic kidney disease, I knew about the difficulties, the need for dialysis and/or transplantation, the need for monitoring, for special diets, fluid restrictions, etc. The big question was; did I comprehend it??? Thinking back, I would have to say no.

I am not sure to this day whether being a RN is a benefit or a burden. Knowing all the details, the pathophysiology, knowing about the need and complications with various treatments, etc is a two edged sword. As you can imagine, your cognition takes over your actual comprehension.  When I think about understanding vs comprehension, I think the understanding comes from the realm of pure cognition, the factual knowledge. Whereas, comprehension emanates from the heart and soul. I now understand and comprehend what it is to have chronic kidney disease, but that is only during this past week. You might ask why only now?? I was diagnosed in 1992.

I recently went to see a counsellor because of all the various emotions I was having regarding “living the life”: I was having difficulty trying to stay “normal”. My personality is one in which I am very driven and determined. Don’t tell me I can’t do something, because I will prove you wrong, not matter what the cost to me. Whenever I set out to learn something, I like to know it. The same with my new diagnosis back in 1992, a year after the birth of my beautiful daughter and only a few years after graduating from nursing. That is when my battle with staying normal and living the life began. I was 27 years old.

I was juggling new roles with motherhood and being a step mom to two boys, a fairly new RN while settling into a new community not so long ago. But one day I broke: I was feeling not so perky. Being a RN I was able to review my lab work with my Dr, not as a patient, but as a RN: analytically. I said to my Dr, I don’t understand why I feel so crappy: my potassium if normal, my creatinine was stable with a decent estimated glomerular filtration rate, my hemoglobin was decent???? He looked me in the eye (now this a Dr that I also worked with) and said to me: Loretta, you have chronic kidney disease, you can’t expect to control each thing and feel fine, it is more that that. Oh my God, the understanding and the comprehension just collided head on! This was the first time I cried.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
Elisabeth Kübler-Ross

What I do know and appreciate about my journey is the understanding, the empathy, the appreciation and sensitivity I have gained through going through so many battles with my health, that it has made me a better nurse! I truly understand & comprehend what it is to live with a chronic disease. Be kind to each other.

 

Living the Life!

” Strength does not come from winning. Your struggles develop your strengths.  When you go through hardships and decide not to surrender, this is strength.” Arnold Schwarzenegger

Strength, hardships, decisions leading to surrendering  or living the life??

I have started this blog with the intent of working through some grief (just found out this from a session with a counsellor) which stems from me trying to “live the life” of a normal person, when clearly, I am not really normal. No, I’m not some lunatic…I am a mother, a registered nurse, a daughter,a wife,  a friend, a sibling, and I live with chronic kidney disease among other chronic health problems. While I try to live a normal life, it has become increasingly difficult and wearing. This blog will be my experiences, thoughts, feelings and adventures in this crazy world! Come along for the journey if you have the courage.