Transverse Myelitis & Me, With A New Addition!

I’ve started writing this post so many times I’ve lost count. My mood has been so up and down this week that when I start writing nothing makes sense. To be honest the way I write is what I think so I shouldn’t be surprised that what I write at the moment is a complete mash.

I feel awful sat here thinking how shit things are when all I hear right now is L laughing his head off at toy story and the birds singing in the garden.

Who am I to feel so isolated and alone, when I have the most loving family and great friends. Why is it all I feel is an overwhelming sense of failure and burden when I see my children laughing and others around me so happy.

This past week I’ve allowed the dark clouds to overwhelm me, sneakily I suppose and most definitely when I’ve least expected it.

What right do I have to feel so useless and crap when I watch those around me holding things together when catastrophic events are happening in their lives?

I’ve seen people battle through their working week when family members have been so very very sick. I’ve spent the week looking up to a person as they’ve held down their work, run their house, run backwards and forwards to the hospital, demand answers, deal with family yet they are still standing strong and keeping their head held very high where it should be as they’ve shown tremendous strength and courage.

I’ve watched them over this time and been in awe of how they’ve kept going and it’s made me question why on earth I cant keep myself with my head above water.

This week I’ve felt more and more like I am losing even more of a grip on my limited role as a parent, wife and myself. I’ve cried over the most stupid of things, not wanted to get out of bed, wanted to quite literally bury my head in the sand and wash away all this stuff that’s worming it’s way through my thoughts and making me want to turn back the clock and be a normal person again.

I know I should be grateful for what I have, I know my husband loves me (I don’t understand why or how he can but apparently he does), I have 2 children who I love with every ounce of my being and that I would do anything in my power to give them the lives they deserve. I have family who love us and help us within their own capabilities.

So with a life so rich in love, why oh why do I feel so alone/so useless.

This week I proved to myself that not only am I failing as a parent but also to myself.

I don’t know what possessed me to think I could self transfer from my wheelchair onto the stairlift but in my head I needed to get upstairs. I wasn’t really prepared for the fact my brain and legs aren’t connected or speaking to each other. My stupidity led to me falling from my wheelchair onto the floor, smacking my leg as I went down. Paul found me in a heap and had to drag me through the kitchen to L wet room and hoist me back into my chair. So now not only have I a huge bruise on my leg but i feel even more useless than before.

I feel like im in a big black hole that is getting tighter and tighter and I’m finding it increasingly harder to keep a grip on the top to pull myself out.

I hate the way I look, no matter how little or much I eat I cannot shift the weight and I find looking at myself horrendous as I look and feel so fat.

How can anyone bear to be near me. I loathe myself so much.

I know people will say ‘chin up” ‘keep smiling’ ‘you aren’t that bad’ ‘stop being so negative in your writing’ and much more but right now this is how I feel deep inside.

The sunshine has helped lift my mood a little, especially when spent around friends and when my carers, 2 in particular, come in and have a chat with me and try to lift my spirits with a laugh and smile.

It’s their upbeat, happy kindness that bring the rainbows into my dark days. They talk to the boys, make L laugh and poke his tongue out, make A squirm when they nag him jokingly about his homework (or lack of it!! He certainly doesn’t listen to me about anything I ask homework or home wise!!!)

I’m finding I’m getting increas#iĺy anxious in the middle of the night, panicking about which carers are due in that day and whether I know them well or not. There have been a lot of changes lately and I’m finding it hard to process my anxieties over these changes. I know deep down I have nothing to worry about as they are all fantastic. Sounds so stupid when I’m writing it down. Pathetic really.

My boys and hubby are my rainbows, always full of laughter and all Ls carers bring smiles and dippyness into the house making it a happy buzzing home.

I know that some people reading this will tell me to stop moaning and look for the bright side but right now all that I see is a black cloud with flickers of a rainbow poking through.

I’ll stop writing now as I think you’ve all had enough xxx