12/05/2024 - '2 blogs for the price of 1' by David

Apologies for not posting a blog for a while, unfortunately I haven't been well as I've had tonsillitis, which laid me low and I just wasn't in the mood for writing. 

I'm very lucky that I don't have to get up for work any more, so I could stay in bed, wallow in my own self pity, drink lots of lemon and ginger and for the first time this year...sunbathe!

I slapped on the factor 50 and took my book and a coffee outside and it was lovely to feel the warmth of the sun after a long wet, and windy winter. 

I'm storming through my books to read, having gorged on and enjoyed Alan Partridge's hilarious Nomad, a really interesting biog plotting the genius/madness of Nina Simone, and I'm now halfway through Back Home, the story of England's disastrous exploits at the Mexico 1970 world cup, which ushered in years of disappointment, as we failed to qualify for the next two tournaments. 

It has been a fortnight of mixed emotions in the Baker household, as I'm sure it is for most families, coming to terms with everything life throws at us. 

Alice and I have continued to do some lovely things together, while having to accept that our lives are now being impacted by my condition. 

We have been out with the running buggy around Southampton Common a few times now and Alice is getting used to the steering and the hills, and is getting faster and fitter in the process.

In fact, she ran a parkrun buggy pb of 31:55 this Saturday at Southampton (which is also a course record for the male wheelchair category!). It's hard for her pushing 81kgs while I just sit there enjoying the view and pitching in with a running commentary but we listen to music as we go, and I have a little bell which I 'ding' if we need to pass any walkers. We always get nice smiles and comments as we go sailing past, so it's something we both enjoy. It gets me out of the house, as my lack of mobility necessitates someone to accompany me more and more these days, and Alice likes to get out and keep fit in the beautiful outdoors. 

We've also fed some tigers. Yes, you did read that correctly! A lovely friend of ours, Ruth, organised for us to go to the Wildheart Animal Sanctuary in Sandown on the island, where she works, and we had an amazing experience! They rescue and rehome unwanted animals that have been living in horrendous conditions and the tigers, lions, monkeys, lynx, and lemurs can live out their lives in a safe environment.

We met and fed Natasha and Zoppa, two sisters who were rescued in 2018 from a travelling Spanish circus, where they were kept in cramped and barbaric conditions. They are beautiful animals with their sleek and graceful movement around their large enclosure.

It was amazing to get so close to them that you can see into their eyes, and those teeth! Even though there were metal bars between us, we were only using kitchen tongs to hold the food out to them and it was both scary and thrilling in equal measure. A truly wonderful experience!

Their latest venture is to bring two bears, Benji and Balu, that are currently a sideshow in an Azerbaijani restaurant living off scraps, to the sanctuary and the enclosure they are building for them looks amazing. 

After spending the morning with the animals we visited my dad at the woodland burial where he was laid to rest.

His mountain ash tree is growing really well, and is now taller than me with lots of buds coming through. He would be very happy with that.

Another lovely thing we did this week was to go and see ours friend Andy collect his award at a presentation for the Eastleigh 10k race, where he was given an achievement award for the runner who had cut the most time off their finish in the previous year. Andy has overcome some big issues and has come out the other end smiling, and we were both so proud of him.

We celebrated with an Indian meal, where Alice had the biggest dosa we'd ever seen!

Unfortunately, amongst all these lovely activities, MND kept tapping me on the shoulder, and reminding me that IT was the most important thing in my life, thank you very much!

My feet seem to be forever swollen and my little strings are getting thinner and weaker with every lunar phase so I have started to use a rollater as it gives me more stability and I can use the seat if I need to rest. It's a shame as it means that I can't hold on to Alice's hand so I'm still going to use the stick for walks under 10 minutes for as long as I can (or until I fall, which I haven't yet done!).

My mum also uses a rollater so I'm looking forward to going for a walk (roll) with her sometime. Hers is purple, mine is green. The smart money is on a green win along the seafront! 

Today, was the annual Walk the Wight challenge where walkers (and runners) set off to travel from East to West through the middle of the island, raising money for the island's hospice. Alice and I have completed this twice now, the last time being just two years ago. On reflection, my MND had already started by then as I remember having nightly leg cramps around this time. 

It is amazing to think that just two years ago I could still walk 27 miles of hills and challenging terrain. Last night, I needed to sit down 3 times on the 15 minute walk from my mum's to Eygpt Point in Cowes, with Alice on one side holding me and a stick on the other. I'm so pleased I took the opportunity to get out and do these things at the time, not knowing how restrictive life would become and I have happy memories of those days.  You never know what's round the corner so get outside while you can!

This week, I have taken receipt of a wheelchair for when it's required, which I hope is still a while off. It's brand new and was delivered by the council so again I can only reiterate how well we have been looked after from the local community services. 

Probably the most disappointing thing that happened last week, was the decision to stop driving. I've been thinking about it for a while and even though it will mean Alice will have to be my driver from now on, it's the sensible decision to stop now before I'm forced to by an incident or accident. Luckily we hardly use the car as Alice walks to work and we are happy to get the bus into town, but it's just another task that Alice has had to add to her list of duties. This is a disease that affects both of us in different ways, and neither is joyful. 

I could also tell you about the constipation and weak bladder problems I've experienced recently, but they may have been because I've been poorly rather than MND so I'm sure you will be happy to know that I won't go into any more detail with my toilet habits.

Our spirits were lifted by my daughter, Rachel, who sent us a photo of her new creation. A few weeks ago she asked Alice and I for our fingerprints and knowing that she is very artistic, I knew she was up to something, but I wasn't expecting her to put them together to make a heart tattoo with the words MND Can Get In The Sea above it. What a lovely thing to do! 

I did another DJ Tintin at Overdraft with my friend Anna (DJ Fluffy).

I tried out a set of mostly well known tunes which I'm planning to play at a function next week. And it goes a bit like this;

Atomic - Blondie

Strumpet - My Life Story

Antmusic - Adam & The Ants

Situation - Yazoo

Enola Gay - Orchestral Manoeuvres In The Dark

Sign Of The Times - The Belle Stars

One Step Beyond - Prince Buster 

Favourite Shirts (Boy Meets Girl) - Haircut One Hundred 

Hit Me With Your Rhythm Stick - Ian Dury And The Blockheads

Party Fears Two - Associates 

Swords Of A Thousand Men - Tenpole Tudor

The Ballroom Blitz - The Sweet

Why (instrumental) - Carly Simon

Today - Talk Talk 

Don't Talk To Me About Love - Altered Images

Miss Chatelaine (St Tropez edit) - K.D. Lang

John, I'm Only Dancing (Again) - David Bowie

The Genius Of Love - Tom Tom Club 

I Ran - A Flock Of Seagulls 

China Girl - David Bowie 

Town Called Malice - The Jam

Standing Here - The Stone Roses

Do I Love You (Indeed I Do) - Frank Wilson

I Feel Love - Donna Summer

I met up with my old work colleagues from the hospital last week and we had the best pizzas ever! Edisa is Italian and she and her husband Adam, created a proper pizza base, made from 00 flour, water, and yeast. Having been proved for 12 hours, I then watched her ball it and press it out with her hands, and she even did the rolling it around over her outstretched hand bit. Sadly, she didn't fling it around above her head like they used to do on the Generation Game!

After I had topped it with a tomato and garlic paste and vegan cheese and chorizo, Adam, resplendent in his Michelangelo's David apron, cooked it in their wood fired pizza oven and after Edisa added fresh picked basil, it was ready and oh what a taste! I don't think Sainsbury's frozen pizzas will ever cut it again. 

We finished another busy week with another visit to the Island to our favourite venue the Holmwood Hotel to celebrate our marriage there 7 years ago. Well we would have done if some idiot hadn't booked the wrong date! When we arrived and gave our name, the receptionist said that she had no booking in our name. On further inspection we realised that I had booked us in for Alice's birthday rather than our anniversary. Oh dear! Luckily Alice took this news very well and after trying a few other hotels, we finally found a room and thanks to my brother driving us to it, we were finally settled in. 

It's not actually our anniversary until next week but it's on a weekday and Alice is working so we decided to celebrate it early. We bought snacks and a bottle of Bucks Fizz, which was very appropriate as we watched the Eurovision Song Contest in our room. We do this every year and mark our score cards for song, performance, and staging. We are always disappointed by the United Kingdom's poor placing, but love the occasion and the excitement as the scores are announced, and every now and again we come very close, but not this year. 

We managed to see my mum, my daughter Rachel, my brother and fam, and my sister so we left in good spirits and we completed the boat and bus trip back within an hour!

Alice and I are now enjoying a summer salad in the sunshine with a bitter lemon (and a cheeky splash of rum 😉)

I wish you a week of more happy days than sad, chat soon x