Frustrations of the chronically ill

I have been thinking about illness a lot lately. Especially about the frustrations of being chronically ill. Even more about the frustrations of being chronically ill, yet also being relatively healthy. And, of course, I have been thinking about how being ill and healthy at (almost) the same time is, at times, soul-destroying.

Disclaimer: I recognise that there are chronically ill people who have it “worse” than me, and who may wish that they were as “healthy” as I am. This post is not meant to compare “me to them” nor is it meant to suggest that I have the same experiences as they do – it is merely a reflection of my own experiences with my own illnesses.

For those who don’t know, I have two major chronic illnesses. The first is a genetic kidney disease (polycystic kidney disease, PKD) that I have known about since I was a young child. It is a progressive disease and I largely know what to expect as time goes on (kidney failure). The second is a blood clotting disorder (idiopathic thrombocytopenic purpura, ITP) that I was diagnosed with when I was 21 years old. Unlike the first, my bleeding disorder has no “road map” and I have no idea what to expect and when. Neither disease is inherently “deadly”, but either could ultimately be the cause of my death (which may or may not be premature). The two illnesses are unrelated, but on occasion, they team up to make my life a tiny bit more challenging.

On an average day, my illnesses are almost forgettable. I am aware of them because they are part of my life. But I don’t actively think about them because they do not generally impact my day-to-day living. On these average days, I take a medication that is meant to slow the progression of my kidney disease (tolvaptan) and I casually examine my body to make sure there are no signs of a drastically low platelet count (bruising, petechiae). But those things are such a part of my daily routine that I don’t even realise I’m doing them.

And on an average day, I have enough energy to do everything I need to do and everything I want to do. I can even do much more than I planned most days. I can survive on eight hours or less sleep. I can go for a run (a 5K or a marathon). I can climb hills, go on adventures, cook, clean, do chores, and shower. Most of the time, I can do several of those things in one day without any problems.

But sometimes, I start to feel a bit less than average. Sometimes, one or both of my conditions cause me just enough trouble to slow me down a bit. On those days, maybe a few household chores and a 5-mile run will be my limit before I have to rest on the couch doing computer-based activities for lack of energy. But even then, I can enjoy several “less than average” days in a row without any further troubles.

These average (and average-lite) days also tend to be very productive days. (When I am in the mood to be productive.) I can spend a full day in my office working away on my PhD and related research tasks. And then I can come home and do a bit more writing for my PhD or my personal blog. And my productivity doesn’t stop there. I can write personal letters, I can do a bit of crafting, and I can work on little side projects for myself and others.

In fact, if you were to talk to some “healthy” people, they would tell you that my activity and productivity levels on my average (and even most of my less than average) days are higher than their own. I think most healthy people probably look at me and be impressed with what I manage to accomplish on an average day. (Not having a strong social life helps, as I don’t have to dedicate time to human interaction!)

But then, illness strikes!

Like most people, when I get The Dreaded Common Cold (TDCC) or flu, my activity and productivity levels drop. It’s to be expected. After all, when you’re sick, your body goes into survival mode and all of its energy goes to fighting The Lurgy so that you can get healthy again. However, because of the ITP, I can’t take medications to masks the symptoms which mean that I get the full-on impact of TDCC and all of the pain that goes along with it.

Also, unlike most people, TDCC can cause my body to go into a longer-term battle because my immune system goes a bit rouge and starts killing off my platelets. At the first sign of a sneeze, I start to panic because I know that little sneeze might be the start of a long bout of illness.

That long bout of illness goes far beyond the effects of TDCC and can continue for several days or weeks after the cold has run its course. During this time, my body is fighting itself. Part of my body is working overtime to make platelets and create energy whilst the other part of my body is killing off the platelets as fast as it can. The process, whilst silent and painless, is exhausting and can mean that the slightest little bump can cause great harm, which leads to my being on bedrest or light activity orders. It also means that I am fatigued. Just the act of brushing my teeth is exhausting and I struggle to find enough energy to make it through the day.

Of course, it’s not just the effects of the ITP that can take me down. My kidneys like to have their turn, too.

Because of my kidney disease, I am more prone to kidney and urinary tract infections – and cyst infections. And on occasion, a cyst will burst (ouch!). And any of those things can cause my body to go into recovery mode. Unlike my ITP, my kidney troubles tend to include a great deal of pain. (Although I am very lucky in that I am not one of the people with chronic pain. Thank God for that!)

Quite often, my illnesses “attack” when I expect them. My ITP goes haywire off the back of an illness. My PKD kicks off when I’ve had a fairly rubbish diet for several days in a row.

But sometimes, my illnesses attack without warning. Sometimes, I will have a major platelet crash without any warnings. Sometimes, I will get a serious kidney infection when I had been feeling quite healthy and fit.
And that’s when things get really frustrating.

When one or both of my illnesses rear their ugly heads without (obvious) warning, I find myself more upset than when I am ill “with cause”. It is then that I become quite upset and quite aware that I am, in fact, “sick”. Worse than that is the renewed realisation that I have no real control over my illnesses. I can’t just magic them away with a special pill. I can’t just wish them away or pray them away or “healthy lifestyle” them away. My illnesses are here and they will be with me until the day I die. And, frustratingly, they might hasten my end, no matter how hard I try to stop that from happening.

It is especially frustrating because I actually do try to live a good, healthy lifestyle. I try to find a good balance between enjoying a life filled with activity and pleasurable foods and a life of being cautious about falling and trying to maintain a diet that is good for both my blood and my kidneys. It’s not always easy in a world that worships convenience where overly processed food is king and time is limited. But I do my best.

Only, my best isn’t always enough. And in fact, my best can’t stop the progression of my kidney disease. My best might help a bit, but it will never stop the eventual decline of my kidney function. My best, no matter how much I wish otherwise, is never going to be good enough to save my life.

And that is hard to realise. And it is frustrating because it reminds me that I am not in control. Not really; not fully. And I kind of like to be in control.

It is just so frustrating because I can go from “healthy” to bedrest in just a couple of days. It is frustrating because I can run a marathon on a good day but I can barely leave the house on a bad day. It is frustrating because I have no (real) control over my diseases and I know that either one of them could be the death of me. It is frustrating because I know that my healthy days will start to dwindle in favour of sick days before too long.

And it is frustrating because there is no one to take care of me. There is no one to wrap me in their arms and tell me that it will be OK. There is no one to share my frustrations with; no one to share my fears with.

But today is a good day. Today is a day when my energy levels are running high. I’ve already completed a handful of chores and I am getting ready to go for a run before I head into the office. And here’s hoping that I have a long stretch of “healthy” ahead!

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