After the travails of Christmas bed-wise, Kevin decided to keep a lookout on eBay, Gumtree … to see if he could find a similar adjusting bed or at least a bed frame that would accommodate adjusting units like we have at home. As this type of arrangement is much more common in Europe (France, Germany etc) my dad was also keeping an eye on what was available near to them. As is always the case, one morning my dad sent an e-mail identifying the type of bed we were looking for listed on eBay UK and it was located in Swindon! Kevin set to work having several e-mail exchanges with the seller, who was not prepared to let him view the bed or agree a “buy it now” price. So we waited until the auction was nearly finishing, Kevin placed his bid, was the only person to do so and so we got it for the minimum price. We had no idea about what we were getting condition wise, as the pictures on eBay were not very helpful, but off Kevin went to collect the bed, which fortunately fitted in our car. See photos below for what we got …
So stage I the beds are transported to our house. Kevin fitted the whole ensemble into our car! Bed fame, 2 mattresses and assorted electronics. Not perfect but pretty good for £80.
The mattress covers (although looking good on top) were shot on the bottom. So both were immediately removed and chucked away, leaving only the green, foam mattresses exposed – As you can see, they obtained Charlie’s “seal of approval”.
Now to stage II and Kevin set about scouring the Internet for the best price he could find for new mattress covers (each bought one at time so that we could check the quality). Closely followed by an order for two sheets – and now the bed was ready for testing by us humans! Not that we don’t trust Charlie’s judgement, but he does seem willing to sleep just about anywhere. So, popcorn at the ready and we had decided to start the ‘night test’ in luxury by watching a film on TV (sitting reclined in bed) before what we hoped would be a good night’s sleep.
Kevin did join me for the film, but someone did need to take the photograph and although the doors were shut before Kevin joined me. As expected, as soon as the film finished, I laid down to sleep (with my legs raised a little), whilst Kevin tidied round and fed the cat before joining me.
CONCLUSIONS: The bed worked fine, although we both agreed that the mattresses were very firm and that some more padding was required by means of memory foam mattress toppers.
By the time that my parents arrived from France at the end of January, we had collected together most of the bits for the bed and we now needed to see how much they could fit in their car (alongside collection of a grandmother clock). Actually, it was quite a lot and they left with one mattress, corresponding mattress topper + the electrics for the raise space/lower mechanism.
Now Kevin could stack the remaining parts of the bed upright at the back of our living room and we spent a few days living ‘as normal’. We had all discussed removal of the horrible fabric wrapping around the frame, which needed to be done next before we could decide how to proceed. There were loads of staples holding the fabric in place, which Kevin laboriously removed to reveal the horrible construction that lay below – we have no idea (again) of what to expect …
I suppose it would have been a bit too much to expect that the wooden side panels would be beautiful, smooth wood that could just be varnished! However, the crack would need fixing first with lots of wood glue & clamps. Before removal of the fabric, we had considered applying a thin layer of wood veneer, but after looking at the rough construction we were faced with, we have now started thinking about the possibility of using self-adhesive, vinyl planks of ‘fake wood’ and all agreed that this will provide the best finish.
Last stage will be our next trip over to France in March, when we’ll take over the remaining parts of the bed ready to be assembled in my parent’s house. Fortunately, we are arriving in the morning and so Kevin and my dad can have fun all day (if necessary) getting the bed ready for my bedtime. My mum is having a knee operation just before we arrive and so will be having to “keep her feet up”, so while the men are hard at work and looking after us, we will have plenty of time to chat, read, play games & watch TV together.
Probably the less said about Christmas 2019, the better. We were due to visit my parents in France for about a week staggering Christmas and the New Year. However, having arrived very late (about midnight French time), we were fine but looking forward to a well-deserved sleep … and that’s where the problems started. I (Debra) woke up in the morning of Christmas Eve stiff as a board and my back was ‘killing me’. I spent the day intermittently moping around either sitting in a chair watching TV or lying down on my side in bed. I was dreading waking up the next day, but hoping that by rearranging pillows etc, that my back would be much better – it wasn’t!
Kevin managed to get me downstairs for breakfast using the stair climber and we had the ‘usual’ breakfast of scrambled eggs, smoked salmon, toast and bucks fizz (or in my case predominantly orange juice with just a little ‘champagne’ to provide the fizz). We then all decanted to the living room upstairs, so stair climber again for me and opened cards and the few presents that Kevin and I had brought with us, my parents having announced at the end of November that they weren’t proposing to ‘do presents’ this year as there was nothing that they wanted (despite having asked for something in October/early November that they had seen on eBay) and saying “we didn’t mind, did we?”. As it happened, there was nothing particularly affordable (i.e. only big things that we were buying ourselves anyway) that we wanted either, BUT we had bought them a book about 60 years of the BBC Radio 4’s Today programme that we had bought them at the Cheltenham Literature Festival in October! I had also pestered Kevin to take me to a couple of local ‘Christmas fairs’ at which we had bought a couple of items. We got each other a single book from Amazon but that was it. Merry Christmas everyone …
You’d have thought that nothing else could go wrong, but unfortunately Kevin managed to mis-judge the number of steps between the upper ground floor (our bedroom + lounge) and lower ground floor (main living area + kitchen) of my parents house and sprain his ankle meaning that he was hobbling around and not too sure of his lifting and balance, which is kind of important when he is having to transfer me around. Fortunately, the pharmacy was open on the 26th December and as my mother was going up there, she managed to get a foot brace, which at least helped stabilise Kevin’s foot although the transfers were still caused a bit of consternation for both of us. At this point, we agreed to see if there was a way to shorten our stay and find a suitable ferry sailing to return to the UK early.
Despite the rather muted Christmas day, Boxing Day was much more jolly because an English couple that my parents have known for a few years now (and despite the fact that they had stayed up very late the previous evening) were coming over for late lunch / early dinner and they had got much more into the Christmas spirit – Pixie come Santa outfit for the lady included ! I’m afraid that I got a bit tired over lunch / dinner and departed quite early thereafter to go and have a lie down. This meant that I ended up asleep and didn’t say goodbye to our guests. However, once much revived after my sleep in the evening I logged in to my computer and confirmed that there was an alternative sailing that we could take back to the UK on 27th December. So in the morning of the 27th, Kevin contacted the ferry company and managed to move our booking to the sailing that afternoon (at about 4.30 p.m.) with only a small cost penalty. We contacted the people who were coming in to look after Charlie and let them know that we would be home early and so their services would be foreshortened. I have to admit that I was looking forward to sleeping in our adjustable bed to see if I could sort out my back quickly and Kevin assured me that his ankle had improved enough to drive and so at about 3 p.m. we set off to the port with picnic of various foodstuffs that we had not finished from previous meals. The weather in France for our journey back to the port was horrible – very windy, wet and foggy. However, when we got back to Portsmouth much later that evening the weather was good and we had a clear journey back home to be greeted by Charlie, who had had a wonderful time (judging by the photo evidence below).
Kevin’s family (Mum, Dad & Sister) visited us just after New Year and that was really quite enjoyable and much more usual. We all had lots of presents to exchange with one another and although the dinner was not up to Kevin’s usual high standard (not his fault – the stuffed Goose was rubbish!) I’m afraid I had a quick kip after the early afternoon meal, but managed to make it down for ‘Tea’ where I like almost everyone else wasn’t really up to eating much more. Charlie decided to be a real “star” and made himself very noticeable throughout the day, even rubbing around Kevin’s father (who really doesn’t like cats very much!)
Somewhere in the middle of my last post (primarily about the Cheltenham Literature Festival), I mentioned that first thing in the morning on Thursday, 10 October, we had our new 2-seater sofa + 2 matching chairs delivered. Charlie has already walked round and under them repeatedly, but will only sit on one of the chairs (well actually an old, folded blanket quickly unloaded from our car!)
So, what else did we do at the end of October? Well immediately after the Festival had finished, we had the carpet fitter in to lay carpet down our stairs and also covering the upper landing (if you look closely at the photo above, you can see that since the stairs were renovated we had still not had them carpeted) and since Charlie loves to chase his tail at the top of the stairs, tumble all way to the bottom and then return to the top to do the whole thing again … We decided that just this area i.e. upper landing & stairs would be carpeted, both for reasons of sound isolation and more importantly (or so Kevin likes to tell) for safety reasons for Charlie.
Unusually, I had to make an emergency appointment at the dentist because my back teeth on the left-hand side were giving me toothache. Not the usual constant, dull pain but every so often a sharp, electric shock, which was only exacerbated by my electric toothbrush. We had to see a different dentist to normal, who assured me that my teeth looked very good although there was some swelling of my gums in the place indicated – so he gave me some antibiotics and all seemed fine for a couple of days – before the whole shenanigans started again. So off we went to the dentist again (this time to see my normal dentist), who confirmed that my teeth & gums looked fine, but he could see some striations indicating that I was ‘grinding my teeth’ – perhaps that was it, but I don’t recall consciously ‘grinding my teeth’ – I’m obviously just becoming a hypochondriac!
At some time during this period, Kevin took up the last remaining carpet upstairs (in our guest bedroom) and fitted yet more bamboo flooring, this time coloured as dark wood to fit in better with the surroundings. I also did lots and lots of webinars to make sure that I fulfilled my professional CPD requirement (including watching a live stream of a discussion about “Brexit Readiness”. Luckily, it won’t affect me too much as most of my work is Patent related, but those relying on trademarks particularly will have a real headache! For me, it will only affect my ability to file EU Registered Designs, but we’ll see …
My monstrosity of a huge power wheelchair (that I haven’t used and is not practical) was serviced during October and at the time, Kevin took the opportunity to explain that it was really not what was required – so at the start of December, wheelchair services came to take it away (hooray), which freed up some space and started Kevin’s general sorting out and getting rid of loads of unwanted items on Gumtree. So, this period has been pretty boring really and more and more depressing as the November announcement of a December General Election approached. I stopped watching the news & ignored much of the vitriol spewed on Twitter and Facebook, it really was pretty hateful and upsetting that supposedly ‘normal’ human beings have the capacity to be so nasty to each other, but that’s for the next post and I will finish this with some more pictures of Charlie luxuriating on his ‘special’, new carpet.
OK – Charlie here … silly servants didn’t post this in time & instead went downstairs to do something called “celebrating the New Year” – it was very noisy and full of bangs, which were a bit frightening! I DO LOVE MY NEW CARPET …
My parents arrived in the UK on 07 March 2019, to meet up with their bellringing friends in Froom prior to commencing a ‘bellringing tour’ (by coach) to Cardiff and its environs. Normally, this would not be worthy of note except that the coach appeared to be the ideal breeding ground for transmission of an infection that by the end of the tour had managed to lay most of the participants out with a cough, cold and general malaise.
At the end of their visit to the UK, as usual, my darling parents had arranged a couple of days stopover with us in Swindon prior to their return via Portsmouth to catch the ferry back to France (14 March 2019). They arrived at our house during the evening of 12 March, both with snuffles and head cold, had a taste of our dinner and immediately took themselves off to bed. So far, all had gone pretty much as normal except that the following morning my mother just about staggered out of bed to fill us in on the brief details of their trip before returning to bed – with profuse apologies – to join my father, who was still sleeping. We spent the next couple of days having occasional visits from my mother and father, but the remainder of the time they spent in bed snoozing / sleeping etc.. Too much time has passed for me to accurately remember how much of their time was split between seeing us and snuggling back in bed, but it was not the normal split (of that I can be sure). Upon their return to France, the lurgy continued to lay them low for weeks – although, it appeared to end with a prolonged period of coughing.
From our perspective, the first to succumb was Kevin, which is rather surprising considering my illness and propensity to pick up bugs that have rather unpleasant consequences. Now for Kevin it was cough, cold and general malaise (just like my parents), but for me a day later it resulted in a complete body shut down & lack of appetite (I ended up living on a very small intake of drinks) and I simply could not sit properly or stand up on my very wobbly legs. I was almost permanently sleepy and ended up spending days confined to bed. Fortunately, Kevin had kept all the bits for the TV stand that I used to use around my assisted exercise bike and so he was able to rig up the TV at the end of our bed so that I could watch it during my waking hours.
When I say “waking hours”, I really mean it – they could occur at any time, day or night – I didn’t really notice the difference, but thank heavens for Amazon Prime, because it meant that I could watch lots of shows at any time.
Looking back through the e-mail communications at the time between Kevin and my parents, I was ‘out of it’ for a lot longer than I realised. Unfortunately, my calendar backs him up on this and so I can’t really argue with his e-mail comment: “And on the sixth day Deb awoke and rose from her slumber …”. I realise that I am extremely fortunate because my default position (even from when I was a very young child) is – feel unwell … fall asleep.
Apparently, the next day “the crane” (otherwise known as a hoist) wasn’t required and the improvement continued from there. My Mum and Dad apologised profusely for unleashing ‘the lurgy’ on us both, but it seemed to linger longer with them than it did for either of us. As I commented in an e-mail to my mother on 23 March: “I am over worse of the bug and managing to catch up with some of my work, but I still have the occasional coughing fits. Fortunately, as I spend most of my time sitting at my desk, I don’t really notice the “lack of energy”. For the last few days, I have even been able to cycle ‘actively’ for over 60 minutes on the exercise bike, whilst watching TV.” So, my ill spell was sandwiched between two sessions of work. On 11 March, before my parents visit – I had an e-mail exchange with a potential inventor (unfortunately, this came to naught) and as soon as I was able to get back in my office to my computer I was able to catch up with all my work management tasks i.e. finance, IP management database etc. – one of the benefits of working for your own company, from home.
23 March 2019 – the plumbers are back to fit the ‘replacement’, reduced depth sink, although the drainage is not quite working when the sink is at different heights. The plumber came back from lunch with some more bits, which will hopefully rectify things. Hooray, it worked! We now have a sink arrangement that is much more discreet (i.e. doesn’t stick out into the toilet area) and functions perfectly at all various heights.
I am back on my wonderful, assisted exercise bike again and have slowly got back to “active” cycling for periods of 30 minutes – 1 hour each day and thanks to inspiration from “My Peak Challenge” (via binge watching “Outlander” series 1 – 3 on Amazon Prime), which I only found out about late in 2018 – October to be precise – via one of their lead actors Sam Heughan, who is very into fitness, runs marathons etc..
Now I could have been ‘put off’, as my days of climbing Ben Nevis (at 16 yrs of age) + walking the Nijmegen marches (in about 199?) have long since passed. I now use a wheelchair – due to Secondary Progressive MS. However, I still try to stay as active as possible and although walking any distance is a no-no, I do still try to cycle every day using my ‘assisted’ exercise bicycle and have in the past (about March 2018) managed to cycle every day for just over 3 to 4 weeks, for a sponsored cycle ride in aid of the MS Trust. Therefore, having just spent a couple of months going through a really bad patch, I wanted to try and get back to regular cycling on my ‘assisted’ exercise bike (and having very little willpower) I contacted @MyPeakChallenge via Twitter to see if it would be possible to carry out a “virtual” cycling challenge. They were very helpful and said that yes, of course I could do a virtual cycling challenge and in fact, they already had some people who had done just that. All I had to do was to decide what “my challenge” would be.
As usual, I immediately rushed into finding a route in the UK using Google maps to help me identify the appropriate cycle route, time and distance to complete it. My first thought was to cycle from Swindon (where I live) to Inverness and I set about calculating the route on Google maps. Bad mistake! Of course the cycling setting on Google maps assumes that you cycle at a “normal” speed and when I checked on the distances that I had covered during my previous, sponsored, ‘virtual’ cycling challenge back in March 2018, I quickly discovered that even at one hour cycling, the distance that I had managed to cover was ‘pathetic’ by comparison and therefore “my challenge” quickly changed to trying to cycle the distance between Swindon (where I now live) to Leicester (where I first moved, when leaving home from my parents at age 18). That seemed a much more achievable but stretching target and I decided to try and complete the distance by the end of 2018.
And now the important stats, from my previous efforts (March 2018), I knew that my ‘virtual’, active cycling rates were about:
30 minutes = 3 km, 45 minutes = 5 km & 1 hour = 10 km
Therefore, 171 km will take me about 35 hours of ‘virtual’ active cycling, which if I can manage between 30 minutes and one hour of active cycling each day should be possible by the end of 2018 (allowing for some missed days during the Christmas holidays).
I know this has been a long hiatus between posts, but … I’ve been through massive changes over the intervening months and only now am beginning to ‘come out of the other side’. The cat (Charlie) – last post – is now well and truly part of the family and as you probably expect, is a bit of a character and incredibly friendly and amendable. As his erstwhile foster carer said: “he’s bomb proof”.
At the end of April, we had a sudden call from Swindon ‘wheelchair services’ saying that they had a late cancellation and therefore could we visit their offices that afternoon – we made the appointment, but after that (and all the intervening time) everything became / has become a bit of a blur and suddenly we were looking at options for a powered wheel chair that I could operate independently using a central control lever (as my arms and hands have been getting progressively weaker). Then, we took a late Easter holiday in France (with my parents), and almost immediately upon return to the UK at the start of May we were off to a full programme at the Cheltenham Jazz Festival (or so we thought). It was tough (largely caused by the difficulty of being able to get me in and out of the car) and we decided to miss quite a few performances – self-preservation being the better part of valour! To conclude quite a stressful few days, what better way to ‘pep yourself up’ than a visit to the solicitors to discuss updating/formalising our wills & discussing ‘living powers of attorney’ – weird I know, but that’s just how we like to do things i.e. have a session sorting things out. Next a visit to the “Complex Spasticity Clinic” in Oxford to discuss the pros and cons of fitting a Baclofen pump. Now for someone who has never been admitted into hospital, the cons definitely seemed to outweigh the pros. So May was really quite challenging – although being pleasantly interrupted at the end, by a visit from an old friend from College, his wife and his daughter (who was greatly enchanted by Charlie).
So now roll on June, which started with another full programme at the Cheltenham Science Festival, which we managed a little better than the Jazz Festival, but still missed a few events, although being sure to attend some old favourites – i.e. FameLab final, Science Festival Variety Night & the “Over Ambitious Demo Challenge”. Oh yes – and then back to “sorting things out”, housewise this time. 1. Visit from our usual plumber to discuss the installation of an ‘accessible bathroom’ (this saga still continues) and 2. Installation of large window on the landing at the top of our stairs. 21st June – “Mercy visit” by my dad (from France), because I have been feeling psychologically, physically & mentally s**t during the whole of the period covered by this post. A major change to occur as a result of the visit to ‘wheelchair services’ was our decision to reallocate the two spare rooms that we each use as offices. If we ended up with a larger wheelchair, which may be less manoeuvrable, we decided that I should take Kevin’s previous office (because of straight line access from our bedroom & only one turn into the bathroom, which could be made in our large-ish open landing area). My dad’s unscheduled, but very useful visit also allowed Kevin to finish the “tiger bamboo” flooring in what was my previously allocated office (hence the purple wall). I magically managed to get a Doctor’s appointment which was then closely followed up by a social care team visit – and June is over, but the “fun” is just about to begin …
JULY: The senior Occupational Therapist (OT) visits me to have ‘a chat’, we sign the Wills, we travel to NEC Birmingham for “Motability: The Big Event” (which is surprisingly useful/interesting), the following week a mobile Hoist is delivered and we go back to Swindon wheelchair services to see the wheel chair rep, who is visiting and the next day the OT visits again, with a new design of sling (I think) and I complete my final mentoring meeting at Dorcan Academy, just prior to the final “Celebration & Review”. (I’m quite proud of the fact that despite everything that’s been going on, I am only one review meeting down on the recommended schedule). Continuing: I have my first massage session (very relaxing), we have the plumber back for another look/think & right that the end of July, we finally manage to get our wheelchair lift serviced (having waited since the end of last year).
And so on to August – it seems like nothing much happened to me really, although my mother had some knee problems & steroid injections into her knees and was also having serious and painful poly … rheumatica problems with her shoulders which also required a course of oral steroids (French style i.e. lots and lots for a long time). On 10 August, I am offered a specialist mid day gym session (with more help available) specifically to try and improve my arm strength and more importantly get my grip much more secure. This is followed up by another mid day gym session on 24 August (2 weeks later – I am supposed to practice in the meantime, but I have to admit that this doesn’t really happen). Toward the end of August, I have another massage appointment (we’ve decided this is a GOOD thing and will try to book appointments each month) and the following day we have a ‘sling assessment appointment’ with the salesman, who claims that he has a van full of slings that will fit just about anyone and after this appointment we all agree (salesman, OT & us) that I will need a large size sling, not because my waist is too big, but because the larger sling fits better under my arms and the longer straps allow the hoist to lift me without danger of my head hitting the crossbar on the hoist. So now we have a mobile Hoist + 2 suitable slings, but Kevin is told that he must NOT use this equipment as it really needs 2 carers (1 to control me dangling at one end and the other to operate the electric lift and move the hoist around). So we’re getting there, just very, very slowly.
SEPTEMBER: The Carpenter arrives to start work on levelling the floor across our upstairs landing and to replace the handrails, Newel posts and spindles around the open stairs. After a bit of misunderstanding (on our part, I’m afraid) he doesn’t do anything about the existing stairs or very wobbly hand rail from the ground floor to the first. However, he comes back just a week later and finishes off the job.
In the meantime, I have begun to feel much better, just in time for the “adult social care team” to swing into action. As we are self funding, the ‘lead’ person visits for the financial sign off on Thursday, 13 September and we agree that my first two-person carer visit should start on the following Tuesday (to allow the Carpenter to complete the stairs on Monday). The first visit is OK, except the carers haven’t been told anything about me, nor what they are expected to do i.e. get me up and dressed as quietly as possible and put me in my office, so that Kevin can try to get a little more sleep. (This doesn’t really work when they 1. Ring the doorbell and then 2. Call out “hello” just to let us know that they have arrived). We must have been feeling better, because it was quite funny really and we couldn’t help a little snigger. Also, the dressing bit didn’t go quite as planned – my fault really, as I should have suggested that they put my trousers on whilst I was lying on the bed, before they tried to fit the sling (one with which they were not familiar) to lift me and take me to the bathroom etc. All this meant that their supposed 30 – 45 minute visit actually took them well over one hour. It has to be said that after this first day hiccup, the next 2 days were actually excellent and all finished within 30 to 40 minutes. However, unfortunately after all the shenanigans and waiting, I was much better now and the carers were not really required yet. Still, we had a care plan in place, could be confident that it would work quickly if my condition deteriorated in future and so we decided to cancel the contract for the time being.
I seem to have made it into the midweek gym session now, except that the physio at the therapy centre was going on holiday at the start of October and we had to admit that we also would be busy at the Cheltenham Literature Festival from Friday, 5th October until Saturday, 13th October and then immediately thereafter we were off to France to visit my parents for my mother’s birthday. As with all the previous festivals, we did miss a couple of booked events but those that we did attend were great and we finished with a great show by Marcus Brigstock called “Devil May Care” which was terrific fun and made up for the couple of days that we had to take off after suffering from food poisoning.
I’m not exaggerating (at all), but September and October were not my best and therefore I had absolutely no desire or impetus to write any blog posts – and I’m sure they would not have made interesting reading anyway. I have had major leg spasms and excruciating pain (neuropathic pain? – so I guess it’s not real !) I’ve travelled in wheelchair accessible taxis (not always so accessible in my case, as being 6 foot one seems to cause lots of problems both on entering the taxi – I have to duck – and sitting upright in my wheelchair where my head seems to prop up the roof). I’ve been back and forward to hospital appointments to see physiotherapists & neurologist (in November) and the outcome seems to be that no one really knows what to do – inspires confidence doesn’t it? Anyway, we have been self-medicating on previously prescribed painkillers that reduce inflammation and slowly that seems to be doing the trick. Fingers crossed. Now that’s enough of the medical self-pity, so here is the one bit that did seem to go well-ish in October.
We did make it to some of the gigs we booked at the Cheltenham Literature Festival in October – and they were great – or maybe they just seemed great in the context of everything else that was going on. … No, they really were great and I’m so glad that we managed to get out of the house. (Kevin may not be so pleased, as he had to do much of the “heavy lifting”). Although hopefully the “heavy” part is getting less as I also have not felt like eating much. Special mention goes to the sessions by John Sopel (at the start of ‘our’ Festival) and Ewan Davies (at the end-ish of ‘our’ Festival) whose presentations were both very good – the BBC can be proud of their journalists! We also attended some very interesting sessions on “life in the grey zone” and “speeches that shaped the world” both of which were very well done. The session on “who really runs Russia?” was very interesting – and it’s the first time we’ve heard a Cheltenham audience heckle the chairman of a panel (rightly too)! As you’d expect we did so include some “fun” items – so all in all it was very entertaining. [Sorry no pictures of this event.]
So why did my last post say that I was so busy? Well at the end of May was my (and Kevin’s) birthday and for me it was the big half-century ! Therefore, I wanted to do something to celebrate and what better than to try and recreate my 21st birthday when Kevin and I were at Imperial College in London and I was still a happy go lucky student. Now first: On my 21st birthday Kevin, my parents and I got the overnight ferry to Holland and went to Amsterdam (by train) for an Indonesian rijstafel, returning home on the overnight ferry that evening (well we were students and did have to do things on a tight budget!)
Now of course quite a lot has changed in the intervening 39 yrs – I’ve worked (so have more money), I now use a wheelchair (courtesy of MS) and we have a car. The latter is very important, because trains (that we used all those yrs ago) are a bit more difficult to organise now. However, the ferry still runs from Harwich to the Hook of Holland and with the car we could just drive (Kevin really) from Swindon to Harwich and then from the Hook of Holland to Amsterdam. As the picture shows we managed it, had the aforesaid Indonesian rijstafel and a lot more besides. Unfortunately, or fortunately depending on your age, my/our birthday falls during the Whitsun holidays. This meant that I was never at school during my birthday, but has the downside that travel and holidays in general are more expensive. It also means that the ferry gets booked up very quickly and so plan A had to change immediately – no disabled cabins available for the overnight ferry. Still, we are older now and a little thing like unavailable cabins wasn’t going to stop us. Plan B – take a sedate drive to Harwich, stay overnight in an accessible room at the ferry port and take the day ferry across to the Hook of Holland (having a meal on the way, of course), then drive (Kevin again) from the Hook of Holland to Amsterdam. This should have been easy, but was made a little more complicated by having an out of date satnav and the Dutch authorities building lots of new roads. Anyway, after a short skid via the outskirts of Rotterdam, we eventually made it to the Mövenpick hotel in Amsterdam and met up with my parents that evening. Oh, that’s another thing that’s changed – my parents now live in France and were driving across from the west of France via Belgium to a different hotel in Amsterdam, reasonably close by. Upon meeting up, my parents confirmed that their trip across France and hotel were great BUT their journey around Antwerp had been awful (not good for us to hear, because Antwerp was the next place we were visiting & planned to stay overnight on our way back to their house in France).
Now, booking a hotel when you have a disability and therefore require an accessible room is a bit more difficult than you may think. I picked the Mövenpick hotel in the centre of Amsterdam, because it had an accessible room & en-suite bathroom. It was more expensive than we would normally pay, but I must admit that the accessible bathroom was very good. The hotel is actually built out in the old dock area, which accounts for our rather noisy and changeable neighbours (see pictures). I think this first photograph (of the view from our bedroom window) needs a little more explaining: As I predominantly sleep on my back now, I no longer seem to be able to achieve a full, uninterrupted 9 hours sleep each night. I tend to wake up, Kevin helps me sit up and I spend the next hour or so reading my Kindle. This particular night, I woke up as usual and sat there reading when (around 4 o’clock in the morning) I vaguely became aware of noises outside. Upon looking out of the window in the semi gloom, I was surprised to see that there appeared to be terraced houses opposite that I hadn’t noticed when we first arrived. I went back to sleep for a couple of hours as normal and when waking for the 2nd time Kevin commented that there was a lot of commotion outside. He opened the curtains properly and this was the view that greeted us – A cruise ship ! So after getting dressed and showered, Kevin immediately went outside to take a better look. Upon returning to me in the room, we had lots of jokes about “Costa” cruises and whether the captain had really intended to park to park his large vessel outside our hotel. Needless to say, once I had showered and dressed too, Kevin took me outside and we immediately noticed that our hotel was right beside the cruise ship terminus. We met my parents at the coffee shop right next door to our hotel, where I had a lovely freshly squeezed orange juice for breakfast. My parents didn’t want or need anything having already partaken of a rather large hotel breakfast, which was included in the cost of their hotel. Once all together, we set off into Amsterdam city centre via a bridge over the River and we started to have a look around. Neither of my parents had seen an Indonesian restaurant when they had had a quick look upon their arrival the previous day, but we decided to look around and try to locate the flower market (where of my parents’ friend had said that they had found and Indonesian restaurant) … and on the way, I had an apple pancake (another of my fond memories of Holland from yrs ago). That evening, we had sushi in a weird Japanese-style fast food restaurant I’d noticed on our travels that was wheelchair accessible (unlike lots of the traditional restaurants, which were both narrow, all and had steps up to the door – no change there then!) Anyway, as can be seen from the photograph at the beginning of this post – we did find a lovely, accessible Indonesian restaurant and I got my Indonesian rijstafel. The morning that we were leaving Amsterdam (and my parents) Kevin and I went into a cafe in the Information Centre just opposite the Grand Central Station. The cafe was downstairs, but there was a lift and we decided to stop for a drink and lunch whilst waiting to meet my parents. They arrived and also decided to have a drink/look at the menu, where my mother saw the item “Bitterballen” which she decided to order – another fond food memory that we had enjoyed as a family many yrs ago. (Therefore, completely unintentionally, I had appeared to ‘tick off’ 3 items from my imaginary bucket list.)
Next, Kevin and I made the journey to Antwerp, which as my parents’ had predicted was a nightmare journey – roadworks everywhere! Our hotel was right in the centre of Antwerp and once we had managed to negotiate all the major disruptions, we finally made it to the hotel … and had to have a lie down to recover from what was a comparatively short hop. No pictures of Antwerp, but as you can probably imagine the combination of major reconstruction/building works, removal of almost all dropped curbs and cobbles made our investigations of Antwerp painful for me (in the wheelchair) and extremely tiring for Kevin (trying to manoeuvre the wheelchair over rubble/unmarried pavements etc.) In summary, Antwerp may be lovely in a few yrs time but not at the moment and especially not when trying to get around with a wheelchair or similar. Round 2 finished and onto the round 3, edging ever more slowly towards France.
Round 3 – Mons. Now Mons was lovely and probably had undergone similar building works to Antwerp but a few yrs earlier i.e. a view of what Antwerp may become in a few yrs time. The hotel was lovely and interesting, but again there were lots of cobbles and this time the town was located on a Hill – oh what fun!
And there’s really not much more to say – upon leaving the hotel in Mons, we started on the long drive across France to my parents’ house in Normandy. It had been a fun week away and we were now ready for the final ferry trip home (after a few days recuperating in France) via St. Malo … and yes a bit more food !
The start of 2017 was not really very exciting and there wasn’t much interesting to write about – hence the dearth of new posts.
There were the work tasks: I’m trying to cut my business costs this year and therefore replaced my IP database at the start of January (which included a couple of on-line training sessions in January/February), I met with an old colleague from my previous employer, ostensibly to talk about possible IP protection for some new ideas that he had been tinkering around with, but ended up having a general chat about how the atmosphere has changed as have many of the people. I also did quite a few professional webinars (always good for my CPD).
On the MS/medical front: There were all the usual things – open gym sessions (Monday & Friday), seated yoga (Wednesday), dentist etc., but there were 2 things that did stand out as not being the norm:
1. On the afternoon of 04 January 2017 – we took delivery of my “super duper” assisted bike which Kevin had arranged as my Christmas treat. We are hiring it for 3 months on a trial basis and I’m trying to use it every day. At the end of the 3 months, we will purchase it and the 3 months hire cost will be deducted from the sale price. This just goes to show you how expensive it is!
2. During the last weekend in January, I hosted the “Twitter takeover” on behalf of Shift MS. This might have been quite mundane, but of course in the US there was all the chatter about the election/inauguration of Donald Trump as president of the USA. Fortunately, most of the tweets during my “Twitter takeover” steered well clear of politics!
Unfortunately, this fairly lacklustre spell of progress or rather complete lack of it, gave me the urge to organise several things – another visit with my MP (much shorter and more friendly this time), organising a visit from a carpenter to quote for changes to our stairs and levelling our upper landing and also a visit from a blinds company to quote for installation of electrically controlled blinds in our bedroom. Kevin was NOT pleased, although I have to admit that this flurry of activity was taking place just before my parents were coming to stay with us for a couple of days prior to going on a bell-ringing trip to Devon with a view of their friends from Somerset.
Roll on March: As I’m in bad odour with Kevin anyway, and things still aren’t progressing with the new house, I also arrange for a visit from a landscape gardener to quote for cleaning our block paving area and replacing the paving slabs/edging along the path to our front door. A very nice, young chap (I’m getting to that age when lots of competent adults look ‘young’ to me now) came to visit us, see what was required and provide a quote for the work. My main aim was to get the path to the front door level (making it easier to manoeuvre my wheelchair) and to replace the edging along the path to restrain the gravel between the plants in the adjacent beds, which was spilling onto the path in several places due to accidental hits & bumps from me in the wheelchair. The Gardener said that he could, and would prefer, to do the work before the end of March. In fact, he could start the following week.”Ah, that’s difficult” I said, “because we are off to visit my patents in France next Tuesday and don’t return until 22nd March”. (Mmm, now I’m beginning to appreciate Kevin’s frustration – but I wasn’t going to admit it and he could jolly well sort out arrangements for feeding the cat while we’re away … SULK!) Anyway, the Gardener agreed to start on our return from France and right at the last moment, Kevin organised for a “professional cat sitter” to come in and feed the cat, while we were away. …
AND SO, OFF WE GO TO FRANCE … (Garden photos courtesy of my Dad)
Now my Mum had warned me that on 17 March (St Patrick’s day) they were hosting a celebratory Irish meal and had invited a number of guests – both French and English. We had already seen the Irish flag and bunting as it was ordered on-line and had been delivered to our house a few weeks earlier, and we had been treated to a viewing of their cheap elf T-shirts (picked up in a supermarket during their quick bell-ringing trip to England). The authenticity of the “Irish food” was somewhat dubious, but they had made several attempts to try out the cocktail ‘Black Velvet’ (a mixture of Guinness & Champagne) – now that was sure to go down well in France (!?!) The verdict on the ‘Black Velvet’ was understandably somewhat confused, ranging from “a good way to ruin both Guinness & Champagne” (majority) to “it’s quite nice really” (minority).
I don’t drink much alcohol and definitely avoided the ‘Black Velvet’, but I think the next two photographs go to show what a terrible effect it can have on the photographer (my dad).
I leave it to you to make up your own mind!
My parents had set up an office for me in their spare, spare bedroom and I did spend a couple of hours each day at my computer doing some work! There was some socialising, relaxing, watching films and shopping too and it did provide a nice break for us humans. And now onto the cat: He seemed to have a pretty relaxed and fun holiday too, being well looked after by the “professional cat sitter” as can be seen from the pictures at the beginning of this post and the photographs to end. We shall definitely be using her again for our next holiday – Birthday celebrations!
Sorry for the dearth of posts once again, but I have been doing lots – really!! So now I’m afraid that this will have to be a consolidated post again and also you will have to excuse my definition of a weekend, which includes the preceding Friday too (on both weekends).
Friday, 22 April 2016 we had booked an ‘advice surgery’ appointment with our local MP to discuss our issues with moving house and the implications caused by SDLT announced in the recent 2016 budget. Hardly something to look forward to, but I have to admit that I did look forward to it and it was ‘FUN’ in a rather perverse way. It was raining at the time of our appointment and the MP was running a little late, so we had to wait under the overhanging ‘shop front’, which was fortunately just wide enough to accommodate my wheelchair if I sat parallel to the window. While we were waiting, we noticed several parking spaces being vacated opposite the MP’s office and so Kevin went off to collect the car to be closer in case it started raining even harder at the end of our meeting. Eventually the previous meeting ended and the MP himself came out to greet me, apologising profusely that our appointment was late. He wheeled me into the office preceding all the while to refer to me as ‘sir’ – not a good start for him and in accordance with my ‘evil streak’, of course I didn’t make any admission of the fact that I was actually the ‘Debra Smith’, who had booked the appointment and therefore was not a ‘sir’. Once inside the warmth of the office and upon his observation to his assistant that we were “just waiting for Debra Smith, who was currently moving the car”, I felt it only fair to say that in fact I was Debra Smith and it was my partner who was moving the car. (Not the ideal way to start a meeting in my book, but that’s the reason that I found it ‘fun’ and quite liberating really!) So, we had the meeting, said our piece including pointing out how simply the draft bill could have been written to exclude those people unintentionally (?) hit by SDLT despite having no desire to own a second home or buy to let property, but requiring modifications to their new property before they could move in. For us, we need a lift installed, which has a 6 to 8 week lead time and we did point out that SDLT meant that we were having to take out a loan (for which we pay interest + set-up fees) just to provide HMRC with an interest-free loan which we knew they were required to repay, supposedly within 14 days. We’ll see! Having worked for the MOD (civil service) in the past, I commented that unless HMRC were planning a major recruitment drive, I thought this was highly unlikely! The MP tended to agree.
Saturday, 23 April 2016: Unusually, we drove into West London (Cheam to be exact) to meet up for dinner with Kevin’s parents, his sister, aunt and eldest cousin. This was a special opportunity because neither Kevin nor I had seen his aunt since she visited us at our basement flat in Chelsea (and that was years ago!). This is because both his aunt Valerie and cousin Maria live in Majorca, Spain and were over for a couple of days because his cousin had meetings in London. I have never met his cousin Maria before, but she is almost the same age as me (she was born in January and I in May of the same year). I thoroughly enjoyed myself, which undoubtedly meant that I was being my usual, extrovert and ‘naughty’ self. (Maria is the one who described to me as ‘naughty’ and she also said something in Spanish which neither she nor her mother were able to translate and I speak no Spanish – however, they assured me that it was complimentary! Mmm.)
Now spin forward to the following weekend – Friday, 29 April 2016. The Friday started fairly inauspiciously with me having to go to the hospital for two eye appointments, the first a visual field test (awful – me having to transfer from my stable wheelchair to a very unstable/freely rotating ordinarily chair with no arms – it was terrifying!). This was followed up by the usual orthoptic appointment where the findings were much the same as before, but this time were repeated with my new distance and reading glasses. Conclusion: Do nothing, but repeat appointment in 3 months time. I’m really beginning to wonder if there is any point in these regular appointments as nothing seems to result and I really find them quite stressful. Fortunately, on this occasion after an awful start of the day I knew we were going to see our first jazz concert at the Cheltenham Jazz Festival that evening. We saw Penguin Cafe (lead = son of the original Penguin Cafe Orchestra), which everyone had told me was great, including my father and they were quite right!
Saturday, 30 April 2016 we knew was going to be tough as we had booked to see five concerts starting at 12.00 hrs with the Trondheim Jazz exchange (group 2 were excellent and really different – it made you feel a bit sorry for groups 1 and 3) and ending with ‘the Printmakers’ at the Parabola Arts Centre (Cheltenham Ladies College), my favourite venue, at 9.00 p.m. It was a really enjoyable, but very tiring day, not helped by a mix-up in booking to eat at Pizza Express, which left us very little time to change venues and eat at Ask Italian. In fact, we had to slip out early from every one of the last 3 concerts, just to give us time to scurry between venues.
Fortunately, Sunday, 01 May 2016 was a much more relaxed affair, with us managing to have a lie in as our concerts (only 2 of them this time) didn’t start until the afternoon / early evening. As the weather wasn’t too good and I didn’t really want to eat outside as I was cold, we went to Ask Italian again for an evening meal which was much lighter, more relaxed and altogether more enjoyable than the previous evening. And that’s where it ends … Our Cheltenham Jazz Festival was over for 2016 and now we just had to wait until early June, when we had lots and lots of tickets for the Cheltenham Science Festival. Hopefully, our rather over heavy schedule on the Saturday will allow us to plan things a little more successfully – although looking at the calendar, every day seems to be a ‘heavy schedule’ at the Science Festival, so much so that on occasion I have no idea when we are going to make time to eat!