I read a blog nearly 5 years ago and, that particular piece of writing has actually changed my life. My ability to be able to convey to my family and those closest to me, the way that I am feeling on any given day has changed my life. It gave me a framework, which on my worst days, I have clung to like my life depends upon it. Chronic illness is heartless and often times I have struggled to convey the true impacts that it has had on me. I have Celiac Disease and looking back now, I can see that it affected so many things about my life when I was growing up. As an adult it caused many problems and difficulties – until it was finally diagnosed and my diet changed. In more recent times, there was something profoundly wrong. Not just a little bit wrong, just an all encompassing, profound wrongness that I tried to articulate to my doctors. It took nearly 18 months but the diagnoses for that was accidentally discovered due to the timing of a blood test. I am learning to live with a really terrifying condition – that is severe in my case. Having to speak to my kids about things like, “if I happen to fall unconscious while I am out in public, this is what you do” and teaching them how to inject me has been frightening. I keep a stiff upper lip to them, laughing about it and we joke – but underneath it all they know that it is not anything to laugh about.
Anyway the writer of Coins was part of my life when I was a child. She was a glorious dancer, kind with her words and I so aspired to be like her. My earliest memory of her was as she danced across the stage in a church musical as Delilah – I thought she was the most beautiful lady I had ever seen. My first impression of her was accurate – she is a beautiful person and when I read her online piece about Coins years ago I took it to heart. You can read that article here. https://keepinmindproject.com/2016/02/09/coins/
Today I am clutching my metaphorical bag of coins very tightly and I am aware that it is not as full as it would usually be. Yesterday I did so many wonderful things – I did something that I have promised to do with my children for 10 years. I tested my BSL and determined that because I hadn’t eaten yet (my sugar drops dangerously low when I eat and drink) it would be safe for me to do a quick trip to the shops and get a few things. That number of things that I need always seems to multiply!! This shouldn’t be an exhausting exercise but it is. The whole time I felt a level of anxiety and I kept reassuring myself that I had my jelly bean stash and at the worst, my injection in my bag should it be needed. We were walking through Kmart, in search of the Bunch-O-Balloons that weren’t available a few weeks ago. There was great excitement when we found some and positioned right by them were tents. Justus (now 13) said to me “I wish we could go camping mum” as he wistfully eyed the tents. and I said “we can, pick that tent up and bring it with us!” He and Lincoln nearly exploded with happiness. But I could see the doubt in their eyes. I was determined that I would not disappoint them again. Big me said no to them constantly. It was easier to say no than to just admit – I cant do that because I am too big.
Moments like those are filled with so much happiness but also with bucketloads of regrets. I think about the things that my daughter missed out on and the mum that my older kids didn’t get to enjoy. There is no fixing that now, no coming back from it now BUT there is the fact that I am not that person anymore. So regardless of the fact that I was feeling unwell, I pushed through the things that I needed to do in the house. I had promised to bake Lincoln cookies so we did that – I know that doesn’t sound like a big deal but the mixing can be hard for me. I powered through that, got dinner ready – which is never a simple affair at our house. 2 lactose intolerant people, one Celiac and one Crohns Disease, meals are complex and everything is always from scratch. After that I did some other writing that I needed to get done and found myself sitting outside at 11:45am with everything completed for the day except the new task, erect the tent and make it habitable.
Thankfully the older boys helped with this and before long the tent was up, we hung string lights, put mattresses in it and the boys continued to enjoy it for a few hours more. Our Regional Covid restrictions have rolled back recently and we were expecting our household bubble person yesterday 😁😁 so we enjoyed time together and after putting the finishing touches on our evening meal, we watched a movie together as a family and then we retired to the tent. I had the best sleep I have had in years (literally) But the pressure of yesterday has taken a toll.
Today I am bereft of coins, I did not manage my energy well yesterday. Everything that I have to do today has gone by the wayside. I did not pace myself yesterday and I’m glad because I loved every moment of it but today I am exhausted and that is my trade/off. I have had three hypos where my blood sugar was under 1.7 and I am curled up in a ball on the lounge, pretending that the washing doesn’t need doing and that mount washmore will fold itself.
Tomorrow will be better and until tomorrow I will just be gentle with myself. Lots of Love Tash