Months have really taken on lives of their own in recent years, mostly in the online realm. Awareness days are so fleeting and easily missed, but it’s hard to ignore a message that’s being delivered to you for a month.
November is a big month for campaigns and I’ve decided to try my hand at participating. Writers all over the world are hitting their keyboards for NaNoWriMo and its spin-off sister NaBloPoMo. I ummed and ahhed about trying my hand at the whole novel thing again but have to concede that such a task is a little out of my reach; day to day living is such a struggle for my body at the moment and I’m not feeling particularly inspired.
Which is probably why the WEGO National Health Blog Post Month appeals to me, it comes complete with prompts. Inspiration sorted! I’m going to give it a red hot go, I could really use a dose of actually achieving something that I set out to do. I’m starting a day late, but I’m not going to let little details like that deter me from my mission.
Along with providing challenges for writers, November also has another job, one that is close to my heart: raising awareness about CRPS. CRPS Awareness Month is the result of a collective of patients getting together (mostly online) to help share stories and information about CRPS. I’m not sure whose idea this was first, but that doesn’t really matter…
This year, CRPS Awareness Month is happening in conjunction with NERVEmber (link to video), organised by The Power Of Pain Foundation. Sadly, many people who have one condition disrupting their nervous system also develop further complications and neuropathy issues. NERVEmber gives the pun, or rhyme, or alliteration, that an awareness month needs, as well as a more inclusive attitude for people living with various or several conditions.
Frustratingly, NERVEmber is hard to Google. The search engine assumes one has misspelt November and so goes ahead and gives you results for the correct spelling. My advice? Enclose that search term in some quotation marks if you’re going surfing.
And now…on with the challenge!
Why I Write About My Health
Rellacafa began as a personal, craft-type blog. At the time, I was living alone in a tiny apartment, dealing with CRPS in only my lower limbs and thinking that I might like to join the ranks of the Etsy entrepreneurs. I was exploring art forms that I’d never given much time to before, drawing and painting, creating things that I wanted to share and Rellacafa was my place to do so.
Things didn’t continue that way for long…
CRPS is a progressive, neurological condition. That is, it gets worse. Or at least, it’s expected to get worse, if you ask a textbook. Although, it’s probably worth noting first that textbooks don’t have a whole lot to say on the topic as much of the pathology and nature of CRPS is still several steps ahead of Science.
Some people manage to stabilise their symptoms or even heal to varying degrees, however every single person on this planet has a different nervous system and treatments effect each of us differently. Some cases progress quickly, some slowly and some never extend out of the initial region that is affected.
I’ve been unlucky in terms of progression. CRPS spread right through my body within a couple of years. Losing each limb to pain, each part of me, was all encompassing. I had nothing else to say, nothing else to write about. Blogging became all about my medical condition because every minute of every day is spent dealing with it.
I write about my health because not much has changed in the past six years. CRPS continues to dictate what I can and cannot do on different days. I go through periods of better coping and periods of not-at-all coping, but I am never without the need to work around constant, agonising, physical pain.
I write about my health because that’s a hard thing to deal with. Writing helps as a distraction, a therapeutic exercise of exploring myself, a way to see things clearly and then decide what I can do inside a moment to make it better.
I blog about my health because sharing helps. I’ve hardly met any people in the real world that have heard of CRPS, let alone live with it themselves. I can count those people on one hand. However, in cyber space there are thousands of us.
Social networking is more than an excuse for people to talk via screens and avoid face to face contact. Social media is a way for people to talk via screens when they physically cannot cope with face to face contact.
Whether that’s due to the pain of travel or simply getting out of bed, geographical isolation, social isolation, depression or any other common situation that people with chronic pain find themselves in, the Internet allows us to connect. Connection allows us to relate, to find understanding.
When you are standing upon a cliff of uncertainty, void of the self that you once were and the wind is pulls you forward with each passing second… finding understanding is priceless.
I blog about my health so that my friends and family might understand me better, so that I don’t have to constantly explain myself in person, so that my story is here for those that want to read it and I’m not ranting it at anybody that doesn’t.
I write about my health because it’s a huge part of my life that I can’t ignore and need to process. I blog about my health because sharing and raising awareness gives me hope and motivation.
Writing and blogging, they’re kind of the same but a little bit different.
Love & First Day Jitters,
This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.