As I’m sure everyone is aware, Esther is taking a little break from the blog and I offered to have a go at it. To my shock and surprise she said “sure, Cathan; give it a go”. Buckle up, everyone; the swearing one from Coffee Break has been let loose on a computer.

Apparently I’m to briefly introduce myself, which is oddly similar to a dating app and I struggle not sounding like a nutter on those, so hopefully I’ll do better here.

I’m Cathan and I am 46 years old. My first symptom of DCM (extreme pain) was in March 2020, a night which changed my world. At the time I was working 40 to 60 hours weekly in a physical job and at the gym power lifting three to four times a week. Symptoms grew, including falls, numbness and incontinence, and I played hospital bingo for most of that year. I don’t think there was a bit of my body I hadn’t seen on a TV screen. By the way, don’t ask them for a picture – like the ones you get when on a rollercoaster – when they have a camera in your kidneys; they look at you weirdly and start asking where your appropriate adult is.

By March 2021 I had been let go from work on medical grounds and was trying, like many of us on here, to advocate for myself and find out what was going on which, with the level of fatigue DCM gives us, is a massive task.

Finally, in December 2022 I was referred to Addenbrooke’s. In March 2023 I was diagnosed as having progressive DCM caused by an undiagnosed spinal cord injury (SCI) that I sustained falling through a roof in 2016. In July 2023 I had an emergency anterior cervical discectomy and fusion (ACDF). The surgical team were very honest and I knew, because of the diagnosis time, that my symptoms were likely permanent.

So now, after four years, here I am: a person living with an SCI and progressive DCM.

Cathan before DCM
Cathan after DCM

January has ticked around and, as is the ritual at this time of year, I am wondering what I can do or do differently this year to maximise the joy I can find in it. I’m not a fan of resolutions. In my opinion they are often reductive, laced with guilt and/or shame when you don’t get them done. Quite honestly I have enough guilt and shame (I-should-be-working guilt, I’m-not-working shame, I-don’t-look-disabled guilt, you get the idea) so instead I’ve decided to focus my very limited energies on ways I can have some autonomy.

With this illness, autonomy is often taken away from us and we need others/aids to help us. Often times we aren’t in control of our bodies, we can’t go places by ourselves, etc. and quite honestly that just SUCKS. So, in setting some small goals or even some slightly bigger ones, we can get, even for a little while, our sense of self and self-worth back. And in doing that some joy is brought back into our lives, which in turn lead us to a word not used much with this illness but I think invaluable and that is HOPE! Hope that the joy we find in doing ten minutes in the garden, painting that picture, watching the birds, or just feeling the sun on your face can be replicated.

I have lost many things from this illness but one thing I have gained is the time and awareness to be present. I plan this year to be present and arrange to include things I can control in order to bring joy to my life. I’ve joined an art class. I’m trying to control my nutrition in order to give my spinal cord a chance. I’m getting aids, such as my wheelchair and power attachment, to help me be more independent .

I’m not saying life is going to be all beautiful, pain- and symptom-free just because we have hope or find joy in things. I’m a realist; I know we have an incurable disease. But having a chronic illness doesn’t mean we cannot have happiness in our lives. If anything, I think we need that all the more to cope like the super heroes we are with this devastating illness.

So I’m putting it out there; a challenge if you will: can you find ten minutes of JOY in every day? Share it with us all. You never know, sharing it might be a moment of joy and hope for someone else.

I didn’t swear so I feel I should say f*** off now, you lot!

Cathan

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