Happy New Year everyone. I think it’s going to be a good one!
Over the holiday period I had the opportunity to talk with many people that are still new to the BigD (that is they are still in their first few months). Many say that they are now used to dialysis: they can handle the needles and the hours in the chair; they feel healthier and have more energy; they understand that they need dialysis to live. But the more we talked, the more I realised that while they understand it logically, most are far from accepting it emotionally.
So I thought it may be useful if I wrote a little about my journey to emotional acceptance, to let you know that you are on a well-trodden path, in good company.
Back in April 2009, in my second post, I wrote a briefly about Dealing with Dialysis. It talked about the Seven Stages of the Grief Cycle:
- Shock: Initial paralysis at hearing the bad news.
- Denial: Trying to avoid the inevitable.
- Anger: Frustrated outpouring of bottled-up emotion.
- Bargaining: Seeking in vain for a way out.
- Depression: Final realization of the inevitable.
- Testing: Seeking realistic solutions.
- Acceptance: Finally finding the way forward.
We all go through the seven stages; some of us go faster than others.
I have been dialysing for nearly 18 years, and I can safely say that it took more than half of those to get to Stage Seven. I touched every base on the way and I still dabble in Stages 5 and 6.
- Shock. I was in shock at starting dialysis for a relatively short period, because I had about 20 years to get used to the idea. My kidneys were damaged in an accident and they slowly lost function until my first BigD day arrived.
- Denial. But I was in denial for about 5 years before I began dialysis. I secretly hoped that it was all a mistake, that my kidneys would miraculously recover, or that biomedicine would grow me a new one and I would dodge the dialysis bullet. That didn’t happen. When Julie offered me her kidney I thought my denial had paid off. Sadly, the transplant failed, so it was BigD for me.
- Anger. My anger lasted off and on for many years, not only because my kidneys had failed me and my life as I knew it was stuffed, but because I had also wasted Julie’s precious gift and exposed her to potential kidney problems for nothing. While I was obviously angry in the early days it has gradually faded (I am still upset about Julie, but she’s OK about it). But I was not above sending messages of anger or denial: coming in kilos overweight, ignoring fluid restrictions and diet, forgetting binders, OD-ing on salt. But eventually I worked out that the only one on the receiving end of my anger was me.
- Bargaining. I talked with every specialist, read everything I could, trying to find a way out. Julie’s kidney was part of that process. But when it comes down to it I didn’t have much to bargain with.
- Depression. Getting depressed about kidney failure and dialysis is like constipation for BigD-ers: you’re never absolutely free of it. I still have days when I get a little miserable or angry about the time it takes or the dietary restrictions, but it passes. It’s not a permanent part of my life.
- Testing. This is another stage that doesn’t stop. I am still trying new things to make BigD easier or more effective and so more liveable. Like a change in diet, different dialysis techniques (like needle size or pump speed), different lifestyle approaches, new hobbies, travelling to different units.
- Acceptance. Yes, I got here, but it took a long time. Sometimes it’s one Stage forward then two back. But I got here in the end.
Every BigD-er I know is working their way through this cycle. Some admit it, others are in too deep.
I think the secret of acceptance is to establish a new equilibrium for your life (again). We’ve done it before: when we left home, when we got a job, took out a mortgage, found a partner, had kids, even grandkids, etc. All of those events demanded change and growth, and we’re up to it this time too.
That doesn’t mean you can’t curse, rage, weep and even whine a little (best done in private). It’s part of the process and can be quite satisfying. Just not too much. Move on.
Information is the antidote to fear and the key to acceptance. Get to know and understand the two laws of dialysis:
- For every action there is bound to be a reaction, and
- Nothing good happens quickly (but bad things can).
Read up on the BigD basics (check out the blog!): How can I avoid too much fluid? Why should I avoid too much salt? What happens when I don’t have enough fluid? How can I manage my blood pressure? Stop my bones decaying? How can I get more energy and stop being so tired? How do I shorten my recovery time, get rid of restless legs, get some sleep? Can I travel?
Experiment, notice, react. Find your best operating level and keep tweaking it.
For me, the key is to accept and use dialysis as your lifeline, but don’t build your life around resenting it. It’s just another piece in the jigsaw that is us.