Home, Sickness, and Sunshine

I’ve gathered my notebook and pen; I’ve got a freshly made coffee and I have already bought the cats outside and to spend some time in the backyard with me while I write.  I start again by  writing about  the warmth, the sunshine,  the birds, the trees. I am writing about the external, the place, …

Letting go of the good or bad: learning to live with grey.

All certainty slips away when I try to describe a day, my day, as good or bad. Likewise when somebody asks me how I am, how should I respond. Which part of me are you asking about, which aspect of my day, my life, my experience am I to refer to. All my moments weave …

Exercising my agency to exercise my way.

I have been living with chronic illness for a few years now, and I am amazed at how much I am still learning. Not about recovery, or about getting better, but about how to live with sickness, and all that accompanies it. The work of being sick. The appointments, treatments, therapies, and the management of …

The real ‘real’ work

I want to be free from the considerations of my conditions, from the restrictions of my impairments. But I cannot rely on this, or wait for this, or even expect this. I know this. I remind myself again, to instead do the best I can do within these limitations, within these bounds. I have to …

Expressions of honesty as an act of defiance

I was talking to my younger sister today and made an off-handed remark about how I need to do some writing as I’m overdue for a new blog post, but I was feeling bored by myself and everything I usually write about, namely me and being sick. So Pam encouraged me to instead write a …

Botox Round Three

This week I had my third round of Botox treatment for migraines. The impact of this round will pretty much determine whether I continue to receive the treatment or not. At the moment, after the second round, the feeling of both myself and the neurologist is that it is somewhat effective. But somewhat effective may …

The need for validation, purpose and meaning.

I made a few starts to this week’s blog post. And they haven’t gotten far. I started one about sorrow, shame and self-blame, another about anger in response to prying and insensitive questions, and another about the subtle exclusion of the chronically ill from so many facets of community life. But then I started to …

10 out of 10 Migraine

I have a working diagnosis of hemiplegic migraines. Given the name of the condition and the fact that it is chronic you would think I would be a dab hand at dealing with migraines. But truth be told in my case the migraine headaches in their classic form are few and far between. Instead I …

Being sick is not a failure

Being sick is not a failure. I have to tell myself this most days. It has become my new mantra. Instead of pursuing my limitless potential for health and wellness I am trying to accept my limited experience in living with chronic illness and the very real presence and impact it has on my body …

Thoughts on self-acceptance, activism, chronic illness and disability

I have recently been thinking about my identity, about who I am, and what I can do. About the labels I use to describe myself- and my concern about what labels other people might use to describe me. I am trying to reconnect with a self-acceptance and self-respect that has wavered over the past few years. It was easier before I was sick. I was working and my identity was closely tied to my role. I believed in what I did, and I was proud of it. I also danced, went hiking, ate out, was connected to friends and community. But since becoming unwell it has become harder, less clear, and I’ve struggled to feel the sense of pride that used to come easily to me. continued...