I don’t know why but sometimes I’m off kilter. I get this heavy feeling of gloom and I’m not sure how I attracted it. It makes me uncomfortably restless. I think of a skipping Damiola Taylor. I see Stephen Lawrence unaware of the fatal danger ahead. I think of my sons. I don’t usually make these links but my gloom drags my negativity from the back of my mind to front of stage.
So I go missing. I don’t Facebook, I don’t blog, I don’t work on my book because I try not to let bad mojo seep into my writing. I like to think of my writing as reflective rather than a ruse to pull others onto my sinking raft. There I go again with negativity. It’s hard to shake. At these anxious times I might lay in bad longer than normal because I don’t want the kids going to school with me on their mind. Unlike doctors and surgeons they get to experience myelopathy up close. They see how hard it is for me to stand from sitting, how I topple backwards, how bending down gives me such violent headrush that I’m gripping the nearest thing to me. It’s a strange sight to see but we do mainly laugh about it…and then I send them to their rooms. Actually I don’t because who’d make me tea and bend down to the fridge to get the cheesecake out?
When my children were little they loved a book called Funny Bones about clumsy skeletons. They lived in a dark, dark, house and when they collided they called for Doctor Bones. Sometimes he fixed them other times Doctor Bones put the wrong foot on the wrong leg or heads on backwards. I feel like this body that I have now is not mine. I was fit and firm and athletic and now I am something quite the opposite. I feel like I’m on repeat. There’s not a collision but my limbs stop working. My consultant Mr Bones (that’s not his name but I did see a neurologist called Dr Tripp – that didn’t go down well) scaffolds my neck. I get to shuffle around again.
So I have a little morose, silent breakdown now and again. It’s not indulgent or selfish it’s necessary. If something important is broken and it can’t be fixed it’s natural to be angry, to feel cheated, to question is it worth getting up today. But it is. It’s that old story… someone out there is worse than you. They are more disabled, they are in more pain, they have no friends or family, they are younger than you and their life will be shorter.
Myelopathy is life changing. It’s like when a first child is born. It will turn your life upside down but I think it’s better to flow gently down its river than be caught up in a current. Don’t feel bad about feeling bad, that’s what I’m saying. And equally important don’t let myelopathy isolate you. Phone family and friends; meet up with them, let them visit you even if you can’t get out of your pyjamas. Even though I was a little low and offline my friend Paula took me to Zaza’s. It was so uplifting to be out and about. My friend Sharon is visiting on Monday – there will be cake. Already I feel a little more myself and here I am blogging again.
I think an element of honesty is important when blogging and talking within a support group. I say an element because writing is about imagination and perspective. I am not down playing how depressed myelopathy can make you feel. How the chronic pain is like some abyss you’re trapped in. I think even Bear Grylls would crack. I’ve been in a bad place a few times and I think each time isolation was at the root of it. I’ve huddled under the duvet crying, I’ve looked at my tablets and had bad thoughts, I’ve screamed at my family. These days when, like the London underground, I come to a sudden halt in a dark tunnel I say ‘Help! I’m struggling, I need company, I want you to watch a film with me, can you make me tea and scrambled eggs’. I think I’m doing better phycologically even though I’m physically worsening.
So if you feel low talk about it. Think of ways your family could help you even if it’s washing up or making themselves and you a meal. If you can’t share your worries with family or friends then go online and check out https://www.facebook.com/groups/myelopathy.support/?notif_t=group_purposes_change¬if_id=1478724691615960 You are not alone. Comfort, help and information is only a few key strokes away.