Writing with a disability – an open letter.

Eleven years ago I was diagnosed with Chronic Fatigue Syndrome (CFS), it’s a disease with almost as many names as it has symptoms (recently reclassified as SEID). About a year ago they added Fibromyalgia to my list and six months ago I was diagnosed with Osteoarthritis and a labral tear in my right hip that can’t be surgically repaired due to the arthritis. As I write this, I’m waiting to hear back from my doctor about the results of more tests and the possibility of at least one more new chronic condition to add to the growing collection. That is the reality of my life.

Why am I writing about this?

This isn’t a pity part or sympathy gathering post, it’s also not a “tell me your secret cure” one (please don’t). I’m writing this post to share information, to share my experience, my life, my challenges and my unique perspective.

I’ve recently become part of a few support groups for people with chronic illness and disabilities and I’m learning a lot from them. Learning to be more gentle with myself. Learning that what I do is enough. What I have to say is of value, even if it’s just a few words. I’m also learning that sharing my story helps others who have similar difficulties in their own lives.

What’s my issue?

I haven’t been able to do much writing for some time now because of various symptoms of my various conditions along with, well, life. I’d like to change that in a way that relieves me of pressure but fulfils my unique and introverted need to sometimes be heard and seen. I have more symptoms then I care to write in a blog post I actually expect other people to read. The worst, as far as I’m concerned, are the symptoms that affect my cognitive functions. This is a a list of the daily cognitive symptoms I deal with:

•Fibro/brain fog

•Confusion

•Difficultculty concentrating

•Categorising and word retrieval

•Memory lapses

•Disorientation

•Difficulty processing information

•Inability to focus (brain and eyes)

I get these symptoms in various combinations and intensity levels depending on what else is going on in my life, how much I’m pushing myself, how much stress is floating around and countless other reasons. It’s unpredictable and frustrating beyond belief. Did you know that you can become so exhausted that you not only want to cry, but actually want to vomit? Now you do.

There are days like yesterday and today where I feel like I could write for hours on end, the ideas flow, I can put multiple words together to form sentences, and as an added bonus, they make sense. Basically I feel like a normal person. These days are few. Strings of these days in a row, are even more infrequent, and so, when I get them I revel in them. I get excited and I get as much done as I possibly can. Unfortunately this in itself can cause days, weeks or months of backlash *sigh*.

There are days when I can feel just fine but as soon as I try to read something, have a conversation with someone or start planning a story, my brain begins to feel like thick stew with added syrup. I can’t brain. I can’t word.

So why don’t I just stop, do something else?

Because I can’t. I could no sooner stop coming up with story ideas or character outlines then I could stop breathing and still survive. I’ve been scribbling on bits of paper, stray pieces of wood, various body parts, anything that would come to hand, from the time I could hold a pencil. I don’t say they are good ideas or characters, my poems were tragic teenage drivel, but I was always compelled to write them down and play with them in a way I’ve never felt compelled to do anything else.

The reality is that I do have multiple hobbies, and many of them I can’t do any more due to their own list of symptom complications. While I’ve been sad to give many of these up, I’ve always been able to shrug it off and accept it, writing is not one of those hobbies it turns out.

Where to from here?

I intend to keep writing, in dribs and drabs if I have to. I also intend on continuing to post some of this writing, here and maybe, just maybe, I can get one of my stories published again, that would be nice. As I continue to discover new resources, create new tools that help me and uncover other tricks and treasures that make this process easier I’ll share them as best I can.

That’s honestly all I have to say today. I want to reconnect with this blog, with myself and my writing process. These illnesses get in the way of me forming a writing habit due to their unpredictability but I will endeavour to keep going, to find a way forward. For now, I’m tired and hungry, and my house is filling with the delectable scent of slow cooked lamb shanks and my mouth is watering more with every passing second.

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