I’m writing this as I’m experiencing a common MS symptom, known as the ‘MS hug”. I’ve always been a hugger but this is not the kind of hug anybody wants to experience. When people refer to multiple sclerosis as a MonSter, it’s for good reason. It sneaks up and attacks when you’re at your weakest.
I’ve been fighting the cold from hell, downgraded from the flu thanks to the infrared sauna. I’ve also been living through a bathroom renovation which has been more stressful than I anticipated. Yeah, I’m a dumb ass. No actually, it would have been less stressful if I had managed the job myself. Okay, yes I’m a control freak and a perfectionist. But if you want something done right, you might as well do it yourself.
So – stress. The worst enemy of anybody with a chronic illness. Hence, the MS hug and an increase of all the other symptoms that make me feel like Beetlejuice in that electrified way, minus the energy.
As an aspiring author, I’m always on the lookout for new authors that inspire me. This book appeared in my Bookbub offerings in February, and I was immediately interested, for obvious reasons. The title and the cover speak volumes. (see pic below)
It’s disturbing to hear so many stories about disabled people being further victimized by the attitudes and prejudices of the healthy. When the government jumps on board to legislate discrimination in the guise of rooting out the lazy, lying abusers of the system, the results are truly frightening.
Are there people that abuse the welfare system? Absolutely. Should all people who are already dealing with the challenges of chronic disability live in fear that they will be accused of ‘milking the system’? I won’t answer that, but we know that it happens all too often.
When I first had to give up teaching and go on disability, one person said how lucky I was and that I should go surfing. Um…okay? It’s ignorance, a blissful ignorance of not knowing what it feels like when your body betrays you and all the things you have taken for granted, are taken away. I wish everyone such ignorance.
For those living that reality, further victimization through government policies is very much part of the whole journey. I am fortunate in Canada to have been supported through the process but I hear horror stories from people in the States and the UK about fighting for benefits and not having enough money or proper insurance to afford medication or adequate healthcare.
We know the effects of stress on the human body, and on chronic illness in particular. I can’t imagine living in that kind of fear day in and day out. Tanvir Bush has taken this situation, and in a brilliant satire, given the power back to ‘the crips’. Her protagonist is blind, as is she, and she has the most amazing guide dog, Chris.
Her writing is exceptional, the way she describes the world from the dog’s point of view is brilliant, and overall this book highlights so many important facets of a world that is disturbingly similar to ours. You want to read this book! Amazon links below.
I’m trying something different this week, in an effort to kickstart my fiction brain. I’m joining the 50 Word Thursday challenge hosted by Tales From the Mind of Kristian and Teresa at The Haunted Wordsmith. Thanks to both of you for hosting this, it was a great simple challenge to stretch my writing muscles. If you haven’t checked out their blogs, head on over for some great stories and writing challenges.
1) Completed piece must be in multiples of 50 words – maximum of 250 words. Anything is acceptable – poetry, story, anecdote.
2) There will be a photo and a random phrase that I will take from the current book I am reading – you can use either or both
3) Please pingback and tag 50 word Thursday, so I can do a summary on the Thursday morning. You can either put your piece in the comments on this post or do a post of your own.
‘Although it was a simple thing to be doing, something strange was happening.’
– Paulo Coelho – The Valkyries
She stepped into the dark alley for a minute, leaning against the cool shade of the building. She closed her swirling eyes and exhaled heavily, then inhaled a slow, shaky breath. Her legs sagged then collapsed under her, the high-pitched screaming making her moan and stuff her fingers in her ears. Dropping her head on her chest, she squeezed her eyes shut to hold back the tears as the nausea roiled in her empty stomach. The vibrations started from deep within, travelling up her spine then out into her limbs until her teeth chattered. How would she get home?
Not much to report here, except that the gnomes and ogres are still having their dance party. I’ve just tried to stay busy doing jobs around the house when the energy permits, getting outside every day, reading a ton and binge-watching Outlander in anticipation of season 4 coming out on Netflix.
I started reading a book I started in the summer, and I had to share it. If you need some perspective, and some good laughs, I highly recommend Furiously Happy by Jenny Lawson. She is also known as The Bloggess and has a thing about taxidermy, as well as an interesting perspective of the world from living with mental illness her whole life.
With chapter titles like “Koalas are Full of Chlamydia” and “Voodoo Vagina”, this is not a self-help book. Yet somehow, it’s very helpful in its own bizarre way. Here are some nuggets from the sections I’ve been reading:
“My psychiatrist told me that when things get rough I should consider my battle with mental illness as if I were “exorcising a demon” and I was like, “Well, no wonder I’m failing so miserably. I’m shit at exercising.”
“Like my grandmother always said, “Your opinions are valid and important. Unless it’s some stupid bullshit you’re being shitty about, in which case you can go fuck yourself.”
“Did you know that kangaroos have three vaginas? Because they totally do and that’s probably why they’re always hitting each other. They probably have PMS every damn day of the week. But on the plus side, kangaroos have plenty of places to smuggle things, with so many holes in their bodies. In fact, they’re so full of holes it’s sort of shocking that all the kangaroo doesn’t just leak out.”
Okay, so she’s random. Maybe that’s what I’m responding to, along with her complete honesty about living with mental illness. I have tremendous empathy for people who live with mental illness throughout their lives. This is new for me, depression was not something I had experienced until two years ago, and so far it has come and gone within several weeks – fingers crossed this time. Living with this feeling day in and day out over years, takes a special kind of fortitude.
It is only in sharing our experiences and being honest that we will break the stigma of mental illness. It is the most rampant of all the invisible illnesses, and it’s time that it was taken as seriously as physical ailments. There should be no shame in admitting that you’re struggling, and it’s important to reach out and ask for help if you’re not coping. You are not alone.
Do you have any books about depression, anxiety or other mental illness that you recommend? I’d love any suggestions in the comments. Links for the book below for your convenience.
Here we are at the beginning of another year. 2018 was supposed to be a stellar year for me because of my birthday magic – I turned 48 on 8/8/18. Bought my 8 lottery tickets and everything but alas, no millions here. Overall, it was a great year, though.
I have so much to celebrate and be grateful for, the most important of all being the health, happiness and success of my three children. They continually boggle my mind with their kindness, insight and focus on developing their individual talents. Pride in one’s children is the best gift of all.
I took a Hiatus for the Holidays, hoping the creative genies would reappear but instead those nasty black gnomes of depression showed up again. Not until Boxing Day at least, so I enjoyed a wonderful Christmas with my family. But they showed up with a vengeance, planting their little fish hooks all over me and pulling me down into their abyss.
Depression is a vicious predator. It doesn’t just affect the person suffering but emanates throughout a household. You can ‘fake it til you make it’ as much as you wish but everyone feels the cloud. Then, of course, you can add depression’s nasty cousin, guilt, to the mix as well.
Even knowing intellectually that the depression is either hormonal (perimenopause is a freaking blast, isn’t it? If I tear up at one more stupid commercial…😭🙄) or MS-related, thereby completely out of my control, doesn’t alleviate the guilt.
However, brooding on either isn’t going to help anything. So, I’m allowing myself the space to feel whatever I’m going to feel and trying to keep to myself as much as possible, without being a total hermit. I do one thing a day to feel productive, and call it good.
One day, one minute at a time
The black gnomes of depression
pierce me all over
Their fish hooks tug me down
Snarling and giggling gleefully
with the ogres of fatigue
Pulling from the depths
with their leaden anchors
They all swirl together toward
The dark pit in the centre
Nauseating boiling ice
But despair and guilt
Waking me in the night
Marrying the pain
The soles of my feet peeled like carrots
The tops shrieking, spasming
The ankles stabbing
Praying for sleep
Praying for release
Praying for me
I’m still struggling but I’m thinking of the parable of the mule in the well that I read the other day. Hmmm…should I be worried that I’m relating to a jackass? 😜 This article from Patch does a much better job of telling it than I can right now.