My Chronic Illness Story

I refer to my chronic illness often enough in blog posts and videos to warrant an explanation here.

So here’s the story:

Way back in the mid 2000s, I found I was experiencing extreme fatigue, weakness, dizziness, and a range of other symptoms. After consulting with my GP, I visited a specialist who diagnosed me with Chronic Fatigue Syndrome or CFS. At that stage I was struggling with the symptoms, but I found I was still able to study, and work part time. It was hard, but I managed between flare ups, and with SJ’s help, got on ok.

The specialist I saw prescribed a medication that he thought might help, but not long after starting it, I got pregnant with Arty, and stopped taking it because it was contraindicated in pregnancy.

I spent a fair bit of my pregnancy worrying about how I would cope with parenting with a chronic illness, but as the pregnancy progressed I found my CFS symptoms lessened. I later found out that pregnancy can cause remission of illnesses like CFS. Yay!

For a while it looked like the illness was mostly gone. I would occasionally experience mild flare ups, but I was able to function as a full time at-home parent for the first four years of Arty’s life with real success.

Then, in 2016, I was hospitalised with extreme chest pain and shortness of breath. The doctors found embolisms in my lungs, and I had to go on blood thinners, take a lot of pain medication, and rest. Something about this episode triggered a relapse in my fatigue symptoms.

Unfortunately, this time the fatigue was just the start of it. I now experience chronic pain along with my fatigue, and my doctors have diagnosed me with myalgic encephalomyelitis/fibromyalgia.

So the upshot is that I am often incapacitatingly exhausted, and in significant amounts of pain.

This, as you can imagine, has a pretty big impact on my life. I have had to quit my job, I often need a walking frame to get around, I end up in hospital with some regularity, and I have to take a whole lot of different drugs to try and manage the condition as best as I can. SJ is incredibly supportive, and I have the most understanding and compassionate little kid in the world, but I still feel a lot of grief and guilt about the fact that I’m not able to be everything I want to be for them.

I’m currently in the process of working with a whole range of doctors and specialists to manage this thing, and see if there are ways we can make it better. This process is complicated by the fact that I have Bipolar IIPTSD, and anxiety, but we’re doing our best to find treatments that take all that into account.

People often like to offer suggestions for things that might help. Please don’t. No matter how well meaning you are. I promise I’ve already heard of it and either tried it, or determined that it’s not an appropriate treatment for me.

So that’s the deal! Hopefully this was illuminating, and puts my more throwaway comments in some kind of context.