26/08/2024 - 'Days by the sea and sit down wees' by David

There was no blog last week I'm afraid as I was really on a bit of a downer. I had been feeling poorly for three weeks and was really fed up with coughing, sneezing and nursing a sore throat. My hands and legs were weak, my body ached all over, and I was feeling sorry for myself, wallowing in self pity on my own at home while Alice was at work. 

Apart from attending the monthly MND support group meeting, I didn’t leave the house for six days and I said to Alice that I just couldn't write anything down. While resting either in bed or on the sofa, I had a lot of time to think and sometimes too much thinking is not necessarily a good thing. 

For the first time since my diagnosis over a year ago, I actually felt scared of dying. It's not the actual death that frightens me as we are all going to go sometime and we just hope it will be painless and atraumatic. MND is largely a painless condition and I've come to accept the inevitable so that isn't my worry. What I am scared about is the process of dying.

I know that virtually all of my muscles will eventually wither away and I will be imprisoned inside a body that I have no control over. As someone who suffers from claustrophobia, this is something I just can't comprehend, but I just hope that as this happens, I will accept it with the same stoicism as I have my symptoms so far. 

The antibiotics that were supposed to be coming by post still hadn't arrived and after phone calls and denials from both the surgery and pharmacy that either of them had them, the mystery was finally solved when after many calls, emails, texts and confirmation of my inside leg measurements, the pharmacy finally admitted that they did have them but because I hadn't picked them up, they had sent them back to the surgery. The surgery then magically found them! What a brilliant system.

My mood was much brighter by the weekend though as Alice, Fin and I were off on our annual pilgrimage to the sun, sea and piracy of Sandown Bay, so I packed the paracetamol, amoxicillin, sun cream and a bag of throat sweets and off we went. 

We spent four nights at the hotel before spending another four in Cowes, staying with Rachel, Max and Mittens.

Hot days on the beach with my brother's family preceded evenings on the pier. While Alice and Fin were having fun in the arcades, I like many other old timers with sticks, and families eating chips, sat on a bench overlooking the sand and sea. 

I watched three boys on the promenade kicking a ball against the sea wall. One touch only and if you miss the wall you are out. We used to call it 'Squash', apparently it's now called 'wall ball' (which actually makes more sense).

What time do birds wake up? I awoke one night for a sip of water and a wee, and as I sat on the pot, I realised that I could hear the waves washing over the shore and onto the sand. I guess it was not surprising as the hotel was literally over the road from the promenade and the beach, but what was remarkable and quite mesmerising was that no other sound could be heard. No creaking floorboards from other rooms, no cars or noise from the street, and no bird sound. Not even a whiff of wind. Just the sea rolling in and back out again. It was a lovely sound, and I let it engulf me as I sat in the darkness. 

For any men reading this thinking why is he sitting down for a wee? Let me tell you that discovering a 'sit down wee' at the age of about 50 was an absolute revelation. Enough toilet talk, let's move on.

Back in bed, I lay there for a while thinking about this, that and everything when I heard a lone gull squawking above. It's all about perception of course, but one of the delights or annoyances about living by the seaside is the call of the gulls as they search for fish in the sea or chips on land. Whether you are in the country or by the sea, most mornings it's the birds outside that wake us, but while the birdsong in the fields and villages is musical, varied and pleasing, flocks of screeching seagulls by the sea is not so pleasant. 

But at 2.30 in the morning, why could I hear just one solitary bird? Was he the night watchman saying "It's alright all you little birdies, everything is fine so keep sleeping?" Was he a lonely bird calling out for a friend? Or maybe he had been out on a bender, and was the 'bird' equivalent of someone holding on to a lamp post, staggering home, singing at the top of it's voice? Five minutes later it was quiet once more, save for Alice's breathing, and other sounds. 

Before finally getting back off to sleep, I impressed myself. I am unfortunately notoriously, and absolutely terrible at buying presents for people. I'm not sure if it's a man thing, as we are always told that we are lazy and unimaginative, so if true, I am the archetype. I tend to buy people things that I either want or like. I used to do this with my ex-wife Donna, and I continued to do with Alice. I even used to buy DVDs or books for the girls that I was interested in and thought they might be too. I once bought Donna a toy hippopotamus as a present. I have no idea why. Even now it makes no sense, and although the girls thought it funny, the birthday girl didn't. That was one of the many reasons why she didn't want to live with me any more. Thankfully, many years later we are back on friendly terms and can laugh about it.

The reason I was so happy with myself is that I have been thinking for a while about buying something for Alice for her to remember me by and in a hotel room, in the middle of the night I had a genius idea and lay there smiling to myself. Whether it comes to fruition or whether another plastic semi aquatic mammal appears, only time will tell. By the way, the lone seagull was awake just before 2.30am.

On the way to our stay with Rachel, we met my mum and brother at dad's tree in the woodland burial ground. It's now two years since we lost him to dementia, and his Mountain Ash is flourishing with blossom and berries. The date of his death coincides with their wedding anniversary, so the day is bittersweet as we mourned his loss, but are celebrated a long, happy lifetime together, that produced such amazing offspring!

Once in Cowes at 'Hotel Rivlin', we spent the next few days walking the seafront, and having a pub meal with friends, watching an illuminated carnival in the rain, drinking cocktails with Rachel and Max, running and volunteering at a wet parkrun, and attending a family meal with more than 20 of us celebrating Max's 30th. 

Four of my friends are running 60 miles in August for MND and probably the most amazing of these beautiful souls is Andy, who can usually be found sitting behind the counter of his record shop eating cake. After not running since his teens, he completed Couch to 5k in July and has impressed us all with his determined attitude and has now completed 80% of his miles with a week to go. As we were on the island, Alice joined him for a run along the seafront and helped him to complete his first 5k without walking.

He has raised over £700 so far and I am so proud of him. 

We finished our holiday with a night at our favourite hotel, the Holmwood on Cowes seafront. We have visited many times and it is our happy place. We always try to book one of their rooms at the front and sitting at the window with a cup of coffee, looking out over the Solent is one of my favourite things. 

It has stood since 1872, and is an old, traditional hotel which once housed continental royalty and King Edward VII. In truth, it now looks it's age inside and out and is a mile away from the modernity of a Premier Inn, but that is in many ways, much of it's charm, and why we like it. The floorboards creak, and the sash windows are leaden and unruly, but the staircase is wide and impressive, and the carpet has the pattern and comforting smell of nostalgia. 

Alice and I have been married at the Holmwood twice, and we have had many family gatherings there over the years, and we go back every year to celebrate our wedding anniversary. There is no lift so this may have been our last time in an upstairs room, which is a shame but hopefully I can continue to watch the boats bobbing along from the hotel garden a few more times. 

Our last day was the August bank holiday Monday and we travelled on the Havenstreet steam railway. I lived on the island for nearly 50 years and this was only my second visit. It was a nice relaxing end to a busy but enjoyable holiday - Choo Choo!

I have noticed that the cramps that I have had in my legs since 2021 have virtually disappeared, but I'm left with a dull ache which pervades the muscles. There are some times, usually at night when there is no ache at all, and it feels as though they are either numb or non-existent. For a few brief minutes, it is absolute bliss, and I just lie there and enjoy it. 

We used the wheelchair and rolator during our holiday and I also managed to walk quite a good distance over the week with my stick and Alice's arm, and am now looking forward to a few days of rest and putting my feet up, as we have very little planned for the coming week, before we go again at the weekend. The adventures of Alice and David continues...