My word for 2016
Yep. This is indeed rather late. We’re in February. Well the last two months have been a bit of a rollercoaster.
Where do I start? On Friday, 18th December, the last Friday before Christmas, I closed the lid on my laptop. I was finished for the year! Noodle had already started his holidays and I couldn’t wait to spend some quality time with my boy whom I’ve missed so much since he started school in September. For the first time ever I wasn’t working up to the last-minute at Christmas and I was going to be really organised. We were going to bake, make, go swimming and all the stuff we’ve not had much time for.
As the afternoon and evening progressed I could barely hold a conversation because something felt very wrong. Within hours my whole left side from the neck to my toes went numb. It just went. It was like it had gone to sleep but wasn’t waking up. I freaked out and drove myself to A&E. I had already seen my GP a couple of weeks before about some odd tingling in my fingers and toes. And although I had a neurology referral and appointment just a few days later, I ended up in A&E three times that weekend. Sunday evening my right side followed. I could feel it taking over and remember crying for sheer desperation of knowing that by the morning my whole body would be affected and there was nothing I could do about it. I had lost almost all control. My upper body felt tighter and tighter. I called an ambulance in the middle of the night terrified that the next thing to go would be my lungs or heart.
All I was met with was blank faces and what they called ‘reassurance’ that my neurologist appointment was so close now. All I did was wonder if I had that much time? Everything was progressing so fast. I was terrified. I held back tears every time I looked at noodle. What would my boys do without me?!!
My neurologist appointment came. I had two MRI scans which confirmed inflammation in several places up and down my spinal cord and in my brain. Further tests would be needed. After Christmas. And when symptoms had been going on for at least 10 days to make diagnosis easier.
Christmas is a bit of a blur. There was a lot of frustration, worry, tears. I needed help doing the buttons on my jeans, Roo lifted me out of the bath, helped putting my bra on. I could barely walk. I was exhausted. The stairs became my enemy. I spend most of my time upstairs near the bathroom. I sat there all day watching TV and reading about everyone’s fab Christmas days on social media.
On Boxing day I admitted myself to hospital for IV steroids. More tests and more blank faces. They’d upped my dose and I was to go home the next day with a huge dose for 3 days. Never again! It didn’t help either.
Eventually it slowed down and I realised that my organs weren’t going to fail. That was the turning point. Although I was still pretty useless, I calmed down and I could see light at the end of the tunnel.
I had a lumbar puncture in the New Year. Results have only just come through and my neuro tells me I’m in “the category of people” who get this once and make a full recovery. No obvious reason was found. I’m still to make the decision whether I want another MRI in 6 months to see if anything further has developed in my brain that could indicate multiple sclerosis.
Five weeks after getting ill, I went back to work, not full-time and not fully recovered. I have since also developed what I thought were new symptoms but those are normal I’m told. I still get tingles all day long, get more tired than I ever thought possible. All part of the recovery. And whilst the ‘diagnosis’ is fantastic and everyone around me is ecstatic, I can’t celebrate. Not yet. I think it will take quite some time before I can truly believe it.
I had a lot of time to think. I have learnt that I need to reevaluate my life. There has been a lot of stress the past year, watching close friends and colleagues going through difficult times, witnessing the Shoreham Air Crash which I still think about almost daily, my little boy starting school, working full-time again, the list goes on.
Those are things I can’t control. What I can do is take time for myself, pursue my new love of photography, look after my body with good food, exercise and fresh air. I can choose to surround myself with true friends and eliminate draining, negative people or things.
With that in mind, my ‘ProjectMe’ has changed a lot. It’s not about losing weight anymore. It’s about living my one life the best I can. Within hours I lost so much on that Friday. It reminded me how much I have been putting off.
So with unforeseeable delay, my word for 2016 is
Thanks for reading. It means everything xx