Spoonie Diaries: Thoughts from the Field

Monday, January 22, 2018
Hello! I am finally writing on my blog for the first time in 2018! A momentous occasion.

Okay, but seriously, I don't actually know why I haven't written in so long. Things have been a bit rough, and my depression has been around. I guess mostly my thoughts have been changing, and I have been considering starting a new blog and devoting more time to my YouTube channel (both of which I have not yet done, either), but I never intended to abandon this blog entirely. I guess it's just something that happened, and now here we are.

Anyway, something that has been on my mind of late is chronic illness - specifically my chronic illnesses - and how you can sometimes be doing everything right but they still react or get a bit worse. A term that I use often - and that I know a lot of other spoonies use - is 'flare'. 'I'm having a cfs flare', 'my fibro is flaring at the moment', 'I'm going through a pretty bad flare of everything right now'. It works well because people can then understand that it's a sudden increase in symptoms that will most likely then die down to a 'normal' or 'regular' level later on.

The thing is, sometimes these flares can feel like they come out of nowhere. I have started to understand the impact that the weather has on my health - heat, for example, is a trigger for my migraines, so I have to be really aware of that. If we are expecting a big storm, or the weather keeps changing from sunny to rainy/cloudy, the air pressure changes involved in that will often trigger a cfs and fibro flare, and I will have trouble moving around and just generally feel unable to get up from a horizontal position.

But, sometimes, the weather is absolutely fine. Not too hot, not too much wind or rain (sadly enough for me, because paradoxically, I love the rain, even though it causes my symptoms to get worse). And yet I am having bad symptoms and can hardly understand what my body is doing.

I had a realisation yesterday that maybe I should have understood years ago when I was finally diagnosed, but apparently I needed to take my time with this one. When I was finally diagnosed with Irritable Bowel Syndrome a few years ago, it made sense. It was frustrating, because that's really an umbrella diagnosis (that is, they are unable to pinpoint what is causing your pain/discomfort/issues, so they say it falls under the general symptom profile of IBS. CFS is the same.), but it made sense. And then, last year, when I discovered I was allergic to egg and gluten, I figured if I avoided those two things completely, I would be fine. Make sense so far? 

So, I have been avoiding egg and gluten for about a year now, and yes, my IBS has gotten better. But it hasn't gone away. I still sometimes get quite bad stomach pain, or discomfort, and my body's way of digesting things seems to be completely different from other people (ie. super duper SLOWLY). Yesterday, I was idly thinking about this as my stomach gently hurt, and then it hit me: Irritable Bowel Syndrome. It's right there in the name. My bowel is just easily irritated and inflamed - which then causes pain. It hit me that it may just be like that for the rest of my life. And weirdly, that kind of comforted me. 

It was like someone saying 'you're doing a great job at looking after yourself, it's just the tools you're working with are a little bit...wonky.' There can be so much guilt involved in having a chronic illness; particularly if it's invisible. Often spoonies are constantly asking themselves 'am I really sick enough to need this support item? they (whoever 'they' is) think I should work harder/go back to work/try harder to get better. am I trying hard enough? what if all of this is just psychosomatic? what if I am making all of this up as a way to get attention?'

To realise that I am actually doing the best I can (which is true, yes, silly brain lying to me) and my pain and discomfort is not actually a sign that I have failed again, but a sign that my bowel is just a grumpy so-and-so, is quite freeing. It doesn't make it much easier when the pain comes on, or I have to cancel another thing because I am too sick to go anywhere, or have my friends and family worried about me because I've had a wave of pain whilst out with them, but it does mean that I can move towards the cessation of self-blame.

Here's to 2018: the year when I stop letting other people make decisions for my body and start learning to understand it myself.

Love to all who read.

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