Trini Doubles, mango-chilli chicken, seasoned fries, guava and watermelon soda

This morning I woke up, wrapped around Suki, with a smile on my face for the first time in a long time, because I was going to spend the day somewhere else.

Mum did her very best (or worst) to stop me from going. There were tears. There was lots of talking in such a pathetic little voice that I had to repeatedly ask her to speak properly because I genuinely couldn’t understand what she was saying. There were complaints of agonising pain. There was refusal to get up or to eat anything. My refrain was “I’m sorry to hear that, but I’m still going.”

And I did go, through the countryside to the ferry, across the Solent to Southampton, and up through the city centre for lunch. Sadly my first choice of restaurant is closed on a Tuesday, and my second choice proved too far for me to walk. (I.e. more than 40 yards away. Stupid legs!)

My third choice was Turtle Bay, a chain serving Caribbean food and drink, as that was where my legs ran out of go. I freely admit that I over-ordered: I didn’t need the Trini Doubles – curried chickpeas in roti – but it’s so much something that mum would “urgh” at that I just had to!

The food took long enough to arrive that I started getting antsy but, once I told the staff I had an appointment to get to, it appeared quite promptly. Even so, I had to wolf down my food faster than I would have liked. It was all just chilli enough that my mouth had central heating for a brief while, and they knocked nearly half off the bill to apologise for the delay, so there’s not much to argue about!

Then a quick dash up to the hospital for my first in-person meeting with my consultant. He seems pretty convinced that I have Late-Onset Multiple Acyl-CoA Dehydrogenase Deficiency (MADD), a condition that is rare – about one case per million people – but possibly increasing in frequency as he currently has four people with it under his care.

The appointment had no real outcome beyond “it is what it is” – MADD is manageable but not curable, and how I am now is probably about as good as I’ll get – but the consultant did say that stress is not good for any neurological condition. He willingly agreed to write a letter, if needed, stating that my current living situation is actively harmful to my health. It’s good to know that’s there if needed.

Because the consultant was running a bit behind schedule, I missed my booked boat back and phoned mum to let her know I would be home later than promised, by about an hour. “Oh, is that all?”, mum laughed, and hung up.

So much for all this morning’s drama!

Of course when I got home,we were straight back to it: within a minute of arriving home, mum had mentioned urine three times. (No exaggeration – it was literally a 20 second loop.)

Despite barely having the energy to stand I made mum some dinner, and sat with her while she unloaded all the complaints she had stored up during my absence. (Most notably during The Great British Sewing Bee, which mum knows I like, where she suddenly developed an agonising pain in her eye. It subsided remarkably quickly when I gave her the bottle of eye drops and told her to put them in herself as I was watching my programme. 🙄)

More than ever I felt the weight of being a full-time carer when I really need a carer myself.

At least Suki seemed pleased to see me home, following me from room to room with a constant rumbling purr. Soon I can lie down, wrap myself around her, and dream of curried chickpeas and living a life where such things aren’t a once-a-year treat.