27/08/2023 - 'The hardest week so far' by David

This has been the hardest week I've experienced since my diagnosis. 

The last five weeks have been a whirlwind of emotions for us both as we have had to face a future neither of of us had planned for. Maybe the enormity of the situation and the reality of what is awaiting me has started to sink in. I have been putting on a brave face for myself and everyone around me and unfortunately it all became too much during the middle of this week and I had a meltdown in front of Alice. 

After enjoying two lovely weeks of annual leave and having the excitement of planning activities that I would like to do while I'm still able, reality really did hit home hard.

If started while away, when I couldn't open a bottle top and Alice could easily. I knew my arms would unfortunately go the same way as my legs but this was the first sign and that was disappointing. On returning home, Alice and I had our first argument since my 'D' day and that was really upsetting as we have been so close and so together, helping each other through the worst few weeks of our relationship. Pre D, we would argue once a fortnight (if not weekly!) But we really have been a team since, and have hugged, kissed and smiled our way through this big pile of poo called MND. 

Last Sunday, Alice and I went to an afternoon barbecue and there were four couples drinking, laughing and enjoying stories as we all do at parties. The conversations included birthdays past and present, aspirations, food, moving house - just the usual pleasant chit chat amongst friends. When I suddenly realised that only one of these eight people will not make the birthdays mentioned or any kind of meaningful retirement and it hit me hard.

I was sitting in the sunshine, in a gorgeous garden, glass in hand, wishing I was in a dark room with my eyes closed. I went to bed that night sad.

My first day back after a fortnight off was stressful. It took a whole day of running (walking) up and down the stairs (lifts), making numerous phone calls and entering data on the computer to enable our first patient on a new research study to get their surgery only to have their procedure cancelled while in the anaesthetic room! I went to bed that night exhausted. 

I hacked and clipped away at the bushes by our house in the pursuit of blackberries the next evening and came away with a big bowl of juicy fruit and lots of cuts and scrapes on my arms. After showering, I could hardly lift the fork or beer can as I ate my tea. I went to bed that night sad and exhausted. 

After another day of discussions with occupational health about my ability to continue working, asking my consultant to complete one form for the DVLA about my ability to continue driving and another to enable me to take my pension early where he has to confirm that I have less than twelve months to live and it was just all too much and I fell apart in Alice's arms.

She has been and will be my rock going forward and we talked and talked through tears, anguish and laughter and we both went to bed sad and exhausted but with the knowledge that there will be better days and weeks and happier times but also sadder, badder and ultimately terrible times too.

My message to everyone is to enjoy the life you have if you are able to do so, and embrace what you have. 

Smile, be kind, share and love.

I really do have exciting things to look forward to and I aim to enjoy them!

I have a couple of DJ sets, a gig, a party, some football games and a coach trip to Blackpool before winter sets in and many more exciting adventures after that.

Get me on that Big Dipper, that sprung ballroom dancefloor and show me the illuminations. 

Shine, my beauties, shine! x




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