It’s been a difficult week. The news from my surgeon is that there is nothing surgically he can do, even though I increasingly become more disabled. I walk like a drunk baboon; it’s ugly. I’ve stopped pool exercising; it’s a blow because it helped combat my increasing weight and wasting muscle whilst lifting my spirits enormously…but it’s spiking my pain. There is no doubt in my mind that right now swimming vertically is off bounds.
The car is a blessing as I can’t walk far but it’s also a major contributor to my immobility and pain. Whatever is going on in my body, it does not like me sitting, or travelling. So I avoid it which is akin to being on house arrest. Many myelopathers have been like this for years but I’ve fortunately bounced back so well after each operation…but there is no outrunning your fate as Final Destination foretold.
I’ve made losses and gains; my writing is a life line. Being able to engage in an activity comfortably at home is incredibly lucky.
I have a beautiful family that love me and want the best for me. We’re not perfect, we have our Eastenders moments. My youngest is 17, in his last year at school, and if all goes well he’ll be at uni next year so it’ll be just my husband and I at home. So my ‘mum’ role has reduced considerably. Now, it’s about having the energy and health to live a life with my husband. For 40 years I’ve always thought of others before myself. Now I’m physically diminished and emotionally worn I haven’t the will or energy to contribute significantly to people’s lives other than my husband and kids.
I rarely phone friends. I hate the phone. Anyone who has suffered depression will understand; a main symptom is phone phobia. But I may pick up the phone if it rings. I will enjoy chatting once I get into it.
Random Attachment is medicinal. It’s important I don’t focus too much on my children. They need to feel unburdened and able to live their lives without thinking I’m going to throw a wobbly. I don’t need constant attention or reassurances I simply need to look after myself better.
Time for me is different. I don’t work. Often I have no sleep pattern. My routine is trying to see my son off to school. I call him long bean…I use to call him chicken or sausage but now I’m Vegan he’s a member of the Bean family…maddness…I know…it’s what becomes of you when you’re on house arrest. I’ve seen some shocking videos of barbaric animal welfare: a live rabbit being plucked for its fur for angora jumpers, never again will I wear angora. A cow that cried; real tears fell from its eyes as it was restrained. Sometimes it’s dwelling on the injustices in the world that lead to me feeling down. Anyway back to Long Bean. I think about his breakfast, even if I can only manage buttering a hot cross bun. It’s about spending time with him. I’ll tidy a little…sometimes I’ll tidy too much. I settle down at my computer and work on my novel…sometimes I’ll type too long. I attempt banter on social media with my older children, then I’ll twitter…sometimes I’m unsure about my responses to tweets and feel a bit anxious. If I’m well my husband and I go for coffee; I try to leave the house once a week. My spacial awareness is poor, I bump into people and things; I get flustered and very confused communicating which makes me nervy. Writing clears my head. When my fingers are slowly typing a life, a place, a feeling, it’s like I’m regenerated. In my head I’m doing the craziest stuff.
I’ve family who can’t reconcile my condition with my writing. They don’t realise the lengths you’ll go to when you are housebound, in my case 296 pages. I think they want me to give in, to throw in the towel, to stop living because that’s what they’ve done. I am fighting every day to live life. I have no room for negativity. People either get on board with me or not. I will keep writing, blogging, Twittering. I will never apologise for the time I spend writing.
It’s overwhelming how many books there are and how many book bloggers. I mean, you write a book, and you’re sort of amazed at yourself that you accomplished that but you are so far away from the end game, so far in fact, that if you’d known you probably would never have put yourself through writing a book. I’m being dramatic, I loved writing my book, writing is the absolute best.
Twittering is quite exhausting. I am easily fatigued. Hanging on in there takes a great deal of energy…but I’ve a book to promote. This is one of the things I tell myself when I wake. I equally love and hate my KDP sales bar chart. I love a sale, even though I might only be earning 25p; I fling open my door and shout it to the heavens. On days where there is no bar my mouth downturns and I feel sad for my little book, just waiting for someone to open its pages to free the words.
I’ve been contacting book bloggers, they have professional, beautiful sites. Even the humblest are witty, current, mini blogging stars. Whereas I’m an asteroid orbiting around their sun. I am going to have to be fully committed to social media to make my book stand out.
Be interesting says online advice. Well, you see the problem. Interesting is not a word I’ve ever associated with myself. I’m very ordinary, I do mundane, ordinary things like put a wash on, or sort out the spare socks…but upstairs…in my head…is a killer, a twisted mind thinking brutish thoughts.
Run giveaways. Yes! I sent my novel off to two deserving young adults. But I’m a mum, I know what kids are like. The last thing they’ll do is read. I’m gently coaxing them. I think they’d be hooked if they make it to chapter 5.
I did a bribery type promotion. Buy my book and all this is yours.
I think reviews are key. I’ve only got 4 reviews out of 52 sales, 7.7%. Not great. Gone are the days when all and sundry could review you. There are so many restrictions and bylaws to prevent the author hyping their own book. Reviews are now totally legit.
As with most things, it helps if you can throw money at it, advertise your book on Amazon and Goodreads, get it to pop up on people’s screens. I’m word of mouth, it will be a slow process. In the meantime I’m reading The Rebirth of Henry Whittle. It’s been a couple of months since I last gave it attention. My health is the determining factor of how long or short I work on it each day.
Unless you had a progressive degenerative condition it would be hard to imagine the determination and physical effort it takes to get rolling. If you knew you’d have the worst strain of flu with an evil migraine for the rest of your life you’d be traumatised. My husband and children see what a mess I am, how broken I am. So they want me to take things easy, put myself first, enjoy my writing, ask others to work around me. It is perhaps a selfish way to live…but living is the key word.
For all those struggling with mental health, you are never alone although it will feel like it, be vocal, to your family, friends, on line. People often say pull yourself together, be strong, think of all you have, think of your family but depression, anxiety, mental illness doesn’t work like that. The hopelessness is so bleak and weighty you don’t have the energy for positive thought and the feeling of wanting to sleep forever is the dominant emotion; the way out of your despair. For me, every time I’ve blogged, vlogged, Twittered, the weight of hopelessness eases. I’ll put the kettle on. Netflix follows. Sometimes when it’s particularly bad I go to bed, shut down, sleep it away.
Some think depression is self indulgent, is weak, but it’s often those that give most to others that struggle to give to themselves. For me, exhaustion is my trigger. Often I take on more than I can cope with. By the time I realise this it’s too late; everything bad thing that’s ever happened to me plays on my mind, like building blocks it intensifies till I’m drowning in self doubt and negativity. An hour later there’s not even a shadow of earlier depression; I’m one hundred percent my happy go lucky self.
We are all an enigma, trying to figure ourselves out, whilst others try to figure us out. At this stage of my life I simply want to be a kind person and have others be kind to me.
If you are on twitter, instagram of wordpress it would be lovely if you would give me a follow. If you have kindle unlimited you can download my book for free. I would love reviews, good, bad, shoutouts on social media, I welcome them all because they will make me a better writer. I will actively follow you back. If you love YA, romance, thrillers and you can afford to buy my book that would be amazing. 10% will go to myelopathy.support and 10% to YMCA West London.
Thank you for reading.
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