Of Wales And Wonders

Well, we've had the new car for a week now and it remains unscratched and undented. Polly has discovered Sport on the gear stick and now uses it whenever there is a bend in the road or a hill, or indeed, a tree by the side of the road. She is still getting use to the football pitch length of the vehicle and we have had to massively cut back a bush to get it into our parking space.

We are off to Wales on Monday for two weeks so if you don't hear from me it is because I am in the land of my fathers and wireless broadband access is rarer than hens teeth. If I can post I will but the odds are against it. Talking of Wales, I would like to take this opportunity to thank the people at the Paul Sartori Foundation who have bent over backwards to make arrangements to organise care and equipment for our holiday. It must seem to them that accommodating the Deal's for a fortnight is more hassle than sorting out care needs in the rest of Pembrokeshire. I assure them we do appreciate the hard work.

Today a man from Possum came to fit a bracket to my wheelchair that can hold the Possum environmental control unit I have had for a while. This little grey box of electronic wizardry can operate all kinds of equipment, including the TV, the lamp, the back gate opener, and the front door intercom and opener. Up until now it has sat frustratingly just out of reach of me and the children have used it as one of the world's most expensive light-switches. Now it is attached to my chair. The only problem being, what with the already attached Neater Arm, my wheelchair is now the length of a pantecnicon. I have the turning circle of a bendy-bus and the chair is beginning to look more than a little Heath-Robinson. I am not safe to be out when there is even the merest hint of an electrical storm.

Right, I'm off to push random buttons on my gadgets to see if I can launch a nuclear strike.

A Wheelchair In Wales

Sorry for not posting for a few days; I'm still recuperating from last week. It's a case of two steps forward, one step back at present. The main problem is fatigue. I'm tiring very quicklybut I'm getting there. Now where were we? Oh yes, Wales.

The Pembrokeshire coast is a national park and is spectacularly beautiful. It is a rugged coastline, dotted with sandy bays, caves and rare wildlife. The whole area is littered with medieval castles. When it rains it dissolves the landscape into a melodramatic scene of countless shades of grey. When the sun shines it is glorious, When the sun shines.

Pam's cough got steadily worse and as a result a doctor had to be called out. This proved easier than you might have expected. Within a few hours of being called a doctor arrived to dispense a prescription and that was pretty much it. Over the next few days Pam gradually recovered and our holiday continued on.

The first few days were spent on the beach doing seasidy type things. When it rained (which was often – this being August, Wales and my summer holiday) we retreated to the local leisure centre to take advantage of Wales' 'free swimming for all` policy. In between showers we visited Carew Castle (pronounced Care-ree) which is a a small but spectacular castle ruin where they put on archery exhibitions and demonstrate medieval armoured fighting techniques. I was beginning to feel a bit bubbly in the chest.

I wouldn't normally have worried too much, At home I would have used the cough machine and kept on top of it, but here, without the necessary equipment the strain began to tell. The more I had to cough, the more tired I became and the harder it was to cough. I could feel the heat of infection starting to burn in the base of my right lung. So on the Saturday, once again a doctor was called but somewhat understandably he sucked air through his teeth and said he would ring the nearest A&E department and warn them to expect me.

The nearest hospital was just over 20 miles away and Polly and I arrived mid-afternoon. We were swept through triage and past a large group of waiting patients to a cubical where someone took blood and measured my O² saturation (90% since you ask) and went through the traditional “We'd better keep you in” chat. Nice though they were, there was no way I was letting myself get trapped in a provincial, non-specialist hospital: Before I'd know it I'd have a tracheotomy and a NG tube. No thank you, I'd take the antibiotics and take my chances. Some friends from home were coming to camp nearby and would arrive on Wednesday and they had said they'd bring the cough machine with them.

On our way out we followed exit signs and went through some double doors towards the car park but found the exit blocked because of building works. We turned around but found the double doors we had come through had automatically locked for security reasons. We went back towards the blocked exit and around the corner to the next set of double doors. These too could only be opened with a security code. Tile were trapped in a corridor. Two elderly ladies sat morosely on chairs."You won't get out that way", they told us with grim satisfaction. Polly and I are made of sterner stuff though and planned our escape with cunning. We waited by the locked door and when someone opened it, looking for the loo, we slipped out, hearing the door click locked behind us, and condemning our unwitting rescuer to limbo and two old ladies. As we moved away I swear I heard a voice say "You wont get out that way." (And was that a cackle?)

Back at the holiday house I began to wonder if I'd made a mistake. My lungs were burning and I couldn't stop coughing. Sucking air in was increasingly hard and I was beginning to feel faint and it was difficult to speak. By the following morning I knew I was in trouble. Polly was seriously considering a 500 mile round trip to get the cough machine or us all packing up and going home. And then, out of the blue, 3 days earlier than planned, our friends Stewart and Catherine and their 4 children arrived with the much needed machine. They'd received Polly's text detailing the situation and had promptly come to our aid, despite having no reserved place to pitch their tent. The cough machine made an almost instant improvement to me. It shifted the by now extremely sticky and hardened mucous and I felt instantly much better.

After a couple of days the antibiotics started to work and for the next week I enjoyed my sunshine and showers holiday with my family and friends. We went to fun places like the excellent Folly Farm and the beautiful Tenby. Our day at Tenby was one of the few purely sunny days of the holiday and was wonderful. I sat on a ramp right next to the beach and read while the children paddled and made sandcastles. On our last day we went to Manor Park, an innovative wildlife park where you can walk through the enclosures along side Wallaby's and Lemurs. When we arrived there was torrential rain and lots of people huddled in cagouls so we ate our picnic lunch in the van and made a dash for it when the rain turned to drizzle. It alternated rain and sun all afternoon but by the end of the visit I was starting to feel feverish.

We stopped at my mum's in Bristol again on the way home which was nice but I was definitely wilting. I made it home and then spent the next 36 hours in bed. The rest you know.

I'm too tired to edit this now so I'm sorry about grammer, spelling, coherence and so on.

Thanks for reading.

The Wheelchair Goes West

I awoke this morning feeling so much better that I wondered if I'd just been making afuss these last few days. Even when I sat up the resulting coughing fit was relatively mild and I was able to transfer to the wheelchair before needing a nebuliser and the Cough Assist machine. Offering up a prayer of thanks for the inventors of the antibiotics and steroids I've been taking I settled down for my first cup of coffee of the day and to watch a glorious day for the British Olympic team. Just for a while we can feel like a proper sporting nation. My temperature is a bit up and down in line with my consumption of Paracetamol and I'm tiring very quickly but essentially I'm better. So how did the situation come about?

We went on holiday to Wales. To be more precise we went on holiday to Pembrokeshire in the far south west of the country, to stay in a holiday house my parents bought back in the late 1970s at Freshwater East. The house is part of a holiday complex and is completely unremarkable but the setting is wonderful. Only a few hundred yards away is a beautiful, unspoiled, child-friendly sandy beach. It is a perfect bucket and spade, paddling and body boarding sea-side bay. The holiday village is a collection of some 500 white fronted, virtually identical terraced houses mostly grouped together in cul-de-sacs of 15. Groups of young children roam freely, watched over by, but generally unsupervised by, a host of parental eyes, enjoying a freedom of play rarely enjoyed back home. The children have grown up together, though only meeting up for a couple of weeks a year, they form their alliances and establish pecking orders and fall into patterns of friendship as though they have only been a part for a few weeks. New children come and go as families arrive and depart like a tide. Our boys, as you might imagine, adore the place.

The four of us plus Pam, Polly's mum, and our luggage had been packed into our van Tetris style and had to be driven the 250 miles to Pembrokeshire. Because space was so limited compromises had to be made with the amount of baggage we could take. We took the bare minimum of wet and dry weather clothing and necessary equipment such as the battery charger and BiPap but we left the Nebuliser and Cough Assist behind because I only need them when I'm ill and I hadn't had a cough for months and months. The odds of needing them were remote and the Cough Assist is a bulky piece of kit, about the size of an old style portable television. Space in the van was very limited.

We are blessed with two children who don't get travel sick on long journeys. Ensconced in the back with a stack of comics and a Nintendo DS they happily passed the first stage to Bristol where we had an unscheduled stop at my mum's because we had forgotten the keys to the holiday house and had to pick up the spare set. The boys were thrilled to see Granny and for a chance to run around her garden while Polly, Pam and I enjoyed a hot drink and chat. Afterwards we set off again, in glorious sunshine, and crossed over the Severn Bridge in to Wales. We stopped again at a retail park at Sarn to buy school shoes at the Clarke's outlet store and have something to eat. I bought a jacket from a discount store and Pam said she'd pop in to another shop to buy a sun hat. 30 seconds later the heavens opened and it began to pour with a drenching rain.

Back in the van, we rejoined the M4 and continued west. Then Pam began to cough.

To be continued. . .

Ill

We are back from Wales and I am sick. Miserably sick. Whilst away I contracted a lung infection which despite a visit from a doctor and a visit to A&E failed to properly clear, and in combination with the increased tiredness that inevitably accompanies being away from home has landed me in some difficulty. I spent all day yesterday in bed in the hope that a lot of rest and time on the ventilator would make me feel better. I must have been exhausted because I couldn't even read a page of my book let alone eat anything.

I awoke this morning to the comforting but anxious faces of Kalepo and Godfrey who decided they were out of their depth and called for Polly. As I was sat up the gunk in my lungs that had accumulated over the last 36 hours shifted and it felt as though someone had poured liquid concrete directly into my airways which then promptly began to set. Polly slapped the cough machine mask over my face and there followed a frantic period of assisted coughs until I could suck in enough air to enable me to be hoisted into the wheelchair.

This afternoon our GP made a house call. Dr Toosy has, as you might imagine, plenty of experience in dealing with me over the last eight years and so knows not to mess around with a couple of aspirins and some cough drops. He has prescribed me a vast concoction of antibiotics, steroids and nebulisers that hopefully will do the trick. Lord, I hope so. I'm too tired to be ill.

When I feel a bit better I will regale you with tales of our Welsh odyssey. Until then – Nos da.

Go West, Young Man

We are off to Wales on holiday tomorrow. This will have an effect on the blog for a a couple of weeks because getting Wi-Fi where we a staying is a bit tricky. I don't want to get technical on you but essentially unless the sheep are properly aligned and Mrs Jones the farmers wife has her sheets on the line you've got no chance of a signal. Please do check back here occasionally and normal service will be resumed as soon as I have recovered from the trench foot and hypothermia associated with a British summer holiday. Don't be surprised if you hear about unseasonably cold and wet weather in the south west corner of Wales over the next few weeks.

Thank you for reading. Have a great summer.

Holiday Arrangements

We have been planning our holiday; we're going kayaking up the Amazon river in boats we've made ourselves from hollowed out logs using traditional methods and tools such as the jaw bone of a Jaguar we've hunted with blowpipes. We will be camping on sandbanks and only eating food we've gathered for ourselves. Oh no, sorry, that was last year. We're going to Wales. My mum has a little house in a holiday village at Freshwater East near Pembroke. It's very nice, just a couple of minutes walk to a child friendly beach, and surrounded by more castles than supermarkets.

The downstairs of the house is accessible with the judicious use of a wooden ramp custom made by our friend, Martin. There is a downstairs bathroom and a bed in the corner of the lounge come dining room come kitchen. When it stops raining it is a lovely place to be.

Of course, going on holiday, like most aspects of my life requires advanced planning. In the past Polly has done the work of two carers, getting me up and putting me to bed, as well as the usual day to day care which, because we are away from home and our usual facilities, is that much more difficult. A few years a go we hit upon the idea of hiring in homecare while we were in Wales. Easier said than done, but we managed it (well to to be honest Polly did) and it made a huge difference. It cost a fortune but at least Polly actually got to have a holiday. And then, in conversation with a social worker, we learned that we could temporarily transfer our 'care package` to Wales at no cost to us. Yippee! Last year it worked beautifully and the Welsh agency went above and beyond the call of duty. So this year we thought we'd do the same. Simple. Of course it wasn't.

Social services suffered a kind of collective amnesia. “Are you sure that's what happened last year?” And “Er. . .So how do we arrange that then?” And “When exactly will you be moving to Wales? We'll miss you.” And eventually, “Ah, Polly, we've arranged care provision for your son... Your husband? Are you sure? Really? I just assumed. . .”

In the mean time – it's half term and so the boys are at home. Just after lunch today S, who was sat next to me, was concentrating very hard and counting, “23. . . 24. . . 25. . . 26. . . 27.” I asked him what it was that he was counting. He looked at me in surprise, rolling his eyes at my ignorance. “Numbers, Daddy. I'm counting numbers.” He sighed. “1... 2... 3...”