Oh dear, I was hoping to title this post, “Reach for the Stars“, but as we have just been knocked out of the World Cup, it’s slightly different. However, the theme remains the same!

So back to my daily life! Prior to our football elimination last week (sob sob) I was getting excited but had several items to complete before watching the game on Wednesday.

I was actually reminded of reaching for the stars last Friday at Jean’s end of term school party. Yes the immortal S Club 7 song. At the event, I settled down for a good chat with my friend Steve, who was actually disappointed that he did not get a mention in last week’s post as THE “friend” who asked us to see the Pink Floyd tribute band. I will subtly correct the faux pas right now! He is sooo sensitive!

Steve is tall, I mean six foot seven tall and a giant of a guy. We have known each other for 30 years or more. Actually, Steve can you remember watching the last semi final in which we lost in 1990? I don’t think Wednesday was much of a shock for us, we expected it deep in our hearts.

As you wanted a mention I thought I’d now recount the story of one day when I’d rather you had not reached for anything! Remember Loch Lomond, in about 1991?

Loch Lomond – by Colin – CC BY-SA 4.0

We were on holiday and for some crazy reason Steve and I decided to go fishing on the Loch in a small vessel! It wasn’t raining when we started out, and I was in a tiny boat with Big Steve. When I mean small boat, Steve was actually taller than it was long!

Once out on the Loch, it started to blooming rain! I remember panicking when Steve thought that standing up was a good idea to help me start bailing out the water! I think I shouted!

Back to the World Cup. There was a real mounting energy in the UK this week and perhaps I was finally going to see a final in my life time with England playing. Being over 55 I was actually alive the last time England won the World Cup, and I remember my Dad telling me I was playing in the garden whilst he was watching the final! He always recounted the fact that I was making a lot of noise and my Mum asked him could he go out and quieten me down. His response, was as mine would have been

“Absolutely not, when the ****** will England be in the Final again, I am staying right here!”

Jean and I were on BBC Radio Sussex on Tuesday, along with other members of the MND Community, carers and professionals throughout the week. We recorded on Monday and heard our dulcet tones whilst driving to the hairdressers.

Back to the preparations for this week’s semi final. On Tuesday I went for a hair cut. Yes I know this sounds pretty rubbish stuff for a blog, but honestly every trip now is like reaching for the stars! I spin into the hairdressers on my scooter, and then zoom up to the wash basin zone. This area is one step up from the ground. “Nothing” I hear you cry, but it’s like Everest now to me. I have a routine though. I park right next to the end basin, and climb out the scooter holding the wall. A quick 180 degree turn, just like Torvill and Dean, and I land with a dramatic triple salchow into the hair washing chair! It’s then a thorough scrub, with that minty conditioner and a rather nice head massage! And then the bigger challenge of getting out!

After the cut, it was a coffee and pasty at the Café next door and we enjoyed 30 minutes of thoroughly criticising passers by (why would she wear that? and you’re in the wrong town comments abound).

Excitement is still high for the game.

On the day of the match, I had an even more challenging trip, to our dentist! It is best compared to a severe rock climb to understand just how disabled unfriendly it is. But I am now used to it, so just see it as a challenge. You might wish to enjoy the description of an earlier visit to the dentists in my old post Suffering Succotash? It’s a good one, I promise.

This week I have ventured to our local co-op a few times on my scooter. You might remember the co-op from the incident in the post It’s not only tortoises that hibernate post, nearly 3 years ago, when I did reach for something to hold which was NOT fixed to a wall. The results were predictable! Back then it was with a walking stick, now it’s a scooter or rollator. On the scooter I have to approach the entrance just at the right speed, as it’s a bit of a run up and I need to negotiate an immediate right turn once arriving. So barring a nice egg display, or someone bending over the ice-cream freezer searching for a tutti-fruiti, things should continue to be good!

One effect of the hot weather is things start to “turn”! What a great phrase! You know, you leave a glass of milk out and before long an alien has emerged from it! It has been hot for us in the UK and as we don’t have air con in most houses, it can get stinky!

Jean, being a biology teacher, has added to this stinky environment at work, with such experiments as inflating lungs in the labs! Jeesh! Reminds me of dissection when I was a student. We had this giant tank of formaldehyde which held the bodies of rats and other animals! I will never forget one girl levering what she thought was a rat out of the tank only to be presented with Thumper the Rabbit!


Larry D. Moore CC BY-SA 3.0.

Scream, Jeesh you would have thought the Martians had landed. She reached in a very different way!

On Thursday a man who really reached the stars for real, or well at least escaped the bonds of our globe, Tim Peake, unveiled a plaque in our Village, where he grew up. During his visit I got speaking to a lady I didn’t know, our discussion started by my trike that I had delicately arrived on! She told me that her ex partner, who lives in our village, had also been diagnosed with MND just months ago! That’s now at least 3 in 4 years, in our village of 2000 people!

On the subject of our spinning earth, I did laugh at a quote I saw the other day:

“Flat Earth Society – we have members all over the globe!”

Shorts are the order of the day here, so I am quite a threatening sight on my scooter! With a huge scar on my leg due to the heart op, and my husky voice, most people just want to avoid me!

“That’s Razor Lee, don’t mess with him“.

Oh I forgot to tell you about a plumber we had visit our house last week to fix a leaky stopcock. He was from a well known major British company.

Now I don’t wish to stereotype, but what else is the phrase useful for!? The plumber was a Rastafarian with dreadlocks. A lovely guy, charming and upbeat as you expect all Carribeans to be. However, on failing to actually fix it, and leaving us with that “everything is going to be alright” feeling, when clearly it wasn’t, we had to get another plumber in from the same company. Anyway, he made us laugh. However, can I suggest perhaps a bit more training or a little less critical service career?!

Actually, one of the other challenges both Jean and I now face is that Jean has to do most of the service person liaison now. With my voice, welcoming and assisting/guiding is not easy. It makes me feel bad in reality, but hey it’s life now.

However, I do hover in the background, ready to leap when I feel perhaps that Jean may be being sold up the garden path! Just like in this clip from the film Ruthless People that is all about buying a new stereo!

So I often have to stagger in holding the walls with a walking stick burbling when I hear potential hogwash. My voice gets much worse when I get tense, so I have to remain calm!

As chance would have it, the second plumber recognised my MND symptoms and divulged that his grandmother had died from MND! Yes yet another reminder of the commonness of this disease.

In the UK we have been celebrating 70 years of the NHS. We are justifiably proud of our service and the doctors and nurses. However, I am not one for letting emotion get in the way of what needs to done to build a scalable service as we move into the future. Changes, at the core, are needed. Anyone who thinks more cash is the answer to everything I am afraid you are looking through rose-tinted glasses.

I will just mention a few things that have happened in the last 30 years that show that continued change is vital, and standing still with just more of the same is not an option.

30 years ago there was TWICE (yes twice)  the number of acute beds in the UK as now, some 150,000 more. Most of this reduction has been due to day surgery, improved anaesthetics, prevention and the advent of minimally evasive surgery. This staggering reduction freed huge amounts of money for new services and treatments.

Although there are waiting lists list now, without the above stay reduction through efficiency we would have had a much worse situation! So there is good news hidden in the often bad news in the media. Of course the challenges have moved around a bit. Innovation is much more important than just addressing today’s problems with today’s tools.

And just to amuse younger readers, 30 years ago you used to be able to smoke absolutely anywhere in the UK, even your hospital bed! Yes, you didn’t read that incorrectly, your hospital bed. Goodness knows how that affected other patients, but it did.

We reach for the stars! But you might only get there by small steps!

Finally this week good luck to my friend, Helen, who is abseiling today for charity. I hope you received the set of

Lord Bragg’s Economy Used Abseil rope

Complete satisfaction or your money back!

What a guy!

Ok readers, enjoy Sunday, despite England not appearing in the World Cup final. Same time next week!

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