It is important to remember that everybody’s experiences of MND are different. People react in different ways, all of which are perfectly legitimate.
Personally, I find that the nights are the hardest.
I’ve been doing so well lately. This blog was giving me more confidence, and I felt more able to talk about things. Mum is doing really well, and will hopefully be out of hospital in three weeks. She’s smiling and loving her new toy. It’s all going to be ok.
Last night, though, I just couldn’t cope. It had been five days since I last cried, but that streak ended in a ferocious outpouring of tears. At about two in the morning I became hysterical. I’m full of cold, so breathing became a struggle. I was coughing and spluttering, unable to breathe through my nose, tears streaming down my face. I know – just what any man wants to see in bed. So attractive.
My partner has been amazing. My sobs woke him up, and yet he wasn’t annoyed, not even for a second. I’m sure he’s struggling at work today – so am I – but he didn’t complain. He held me, calmed me down, managed to get me breathing and talking again – speaking actual words, rather than the incoherent mess that was falling out of my mouth. I was panicking. I was terrified – I still am.
When I got home from work last night, I was smiling. I had just finished buying the twenty first present for my sister’s twenty first birthday, and I was wrapping them on the table. Two guides had arrived from the MNDA last Saturday – one on living with MND, and one about caring for someone with MND. I’ve promised Hannah the latter, so I figured I would start reading it. I felt strong enough to.
I wasn’t strong enough. Not yet.
After the first few introductory pages, I had to put it down. I just couldn’t cope. It brought all those initial fears flooding back. I know I must confront them, but it’s so hard. I’m definitely more of a flight than a fight person, and every part of me just want to run away, pretend it’s not happening, bury my head in the sand and hope it goes away. I know it won’t go away. I just wish it would.
The only part I highlighted was a paragraph on the first page about the importance of you looking after yourself. It’s so easy, as a carer, to concentrate entirely on the person who needs care, but you need looking after to.
It’s the uncertainty that’s breaking my heart at the moment. Every person with MND is different. No two experiences are the same. I don’t know what exactly is going to happen, and I can’t know. My life has completely changed, and I’m not even on the front line of Mum’s care.
I am terrified about what will happen to her. How will she cope? How will I feel when she can’t speak at all, or when she needs a wheelchair, or when she needs assistance breathing? How will I stay strong? Can I stay strong?
What will happen to my life? What will happen to my career, my relationship? Am I selfish for thinking this? What will happen to the friends who are supporting me the best they can now – will they stick by me? Will I move back to Leeds? Will I move in with my sister or my mum?
I wish I could just glimpse into a crystal ball, just for a moment, just so I could have at least some idea for what the future holds. That’s the kind of person I am. I’m a dreamer, a planner, an organiser. I’m not well versed in taking each day as it comes, and I don’t know how to rise to this unwanted challenge.
I just want to know, in one year, in three years, in five … will I be ok? Will we be ok?
I am so frightened by the future, and I can’t find hope anymore. The vivid images I had of my successful career, my wedding day, my children – it all seems to have been tarnished. I can’t find the optimism and excitement I had, because that future is gone. Somehow I need to carve a new path, and I just don’t know where to begin.
I’m taking the long road. I’ve only just come off the crossroads, and all I can see is a winding path cutting through a dark, looming landscape. Where is the light? Where are the stars?
When will I see daylight again?