I’m sorry for leaving it so long. The days seem to fly by so quickly, and before I know it, ten days have slipped by since I last wrote something.
It isn’t because I had nothing to write. I’ve had plenty. But with Mum being in hospital, being busy and work and planning the upcoming move, I haven’t had much time to sit and contemplate how we’re doing.
On Wednesday, it will be three months since we received the diagnosis. So much has changed. So much has become normal.
My frequent visits to Leeds now seem normal. They are part of my routine – one weekend here, one weekend there. I won’t pretend it’s not exhausting. As I said, I’m moving house, so the division of my limited free time does mean I feel a bit on edge, as though I’m never stopping.
I feel like it’s unfair for me to feel that way. I don’t feel like I do enough for my mum and my sister. I text them every day. I try to cheer my mum up when she’s down, and give her positive things to think about, to look forward to. I buy things we need to help with her care, and I send as much money as I can, when I can. But money isn’t all there is. My little sister is the one visiting the hospital, cleaning the house, walking the dogs – doing all the daily tasks to make sure everyone keeps ticking along. My fortnightly visits don’t really cut it, but right now that’s the best I can offer.
Three months ago, Mum’s fiancee didn’t know the right end of a mop, but now he’s slowly getting used to cleaning every day. Especially now the PEG is sorted, we’re conscious of ensuring Mum is in a clean environment – partly for her health’s sake, but also because it is much nicer.
I feel like I am so aware of the disease, although it still surprises me. Perhaps that’s the most stark thing. It still surprises me. Three months is no time and yet so much time. We live with it every day; I read about it all the time. I talk to volunteers, campaigners, families and people who have MND themselves. I explain it to people who don’t have a clue, but really I barely have a clue myself.
This blog was meant to be my private little corner of the internet to try to work out what is happening with my life, to be my crutch as we carry on our journey as a family. Last month it received over 2,500 views and I received 170 visitors. It is as much a part of this journey as I am.
Ok, so I still haven’t told you how Mum’s birthday party went, and of course, she had the PEG fitted last week. I need to talk to her about what she’s happy for me to disclose before I tell you how the operation went.
So, essentially, this little post is just to say – stay tuned! I am still writing, and I still have much to talk about. MND Awareness Month may be well and truly over, but MND doesn’t go away, and neither will I.