Today was a lovely sunny day – at last! Despite a late start (my fault) Kevin hoisted me into the car and we set off to the Whitehall garden centre at Lacock, just past Chippenham. It was my first day out for ages and despite the rather bumpy terrain and sloping arrangement we made it to a different (i.e. not local) garden centre and bought a lovely purple and yellow Lupin (my choice) to pot in the garden and a black, wide leaved grass (Kevin’s choice) to replace the bluegrass that I chose last year and which is now looking a bit bedraggled. We also managed to get some mint and thyme herbs for Kevin to plant in our wooden herb garden arrangement.
It was lovely to just sit in the sunshine and we also took the opportunity to have a tea, chai spiced latte and a couple of portions of cake – just to make a day of it. We quickly popped in to get some foodstuffs on our return to Swindon and came home to find Charlie just rolling around on the paving slabs in the garden. I now have no excuse not to get my head down and do the work that is awaiting me – maybe tomorrow!
My parents visited us at the end of February (21 Feb. – 4 Mar.), which went OK but was unfortunately interrupted at the end Feb./start March by a call from my medical insurance company asking lots of questions with no forewarning. This led to my dad (82) having to hold the phone by my ear as I desperately tried to look up information on my computer with him eventually saying that he needed to close the call so he could rest his arm. The person I have been dealing with had left end 2023 and the new lady, who seemed to know nothing about my case, just decided to ring to find out everything all over again! It was quite ridiculous and left me in floods of tears and quite distraught for at least a week thereafter, as I was left with the impression that I was trying to deceive them. I wrote an e-mail saying that I had been left very upset and asking that in future they should send me an e-mail before calling giving details of the information that they required.
In March I received an e-mail apologising for catching me unawares and saying that this was not their intention, but they would hold any March payment until I provided them with certain information which I did although having to wait until the end of the tax year before sending them my tax information. Since then, I have been told that they will pay my March payment as a gesture of goodwill but I needed to immediately send any details of earnings I expected to make in this tax year. I said that my earnings would be nothing if anything until late in the year as I had no new work nor any means of gaining new clients.
At the same time that all this was happening, I was informed by the new manager of the catheter clinic that we have been attending for many years that after my appointment at the end of January (not with my usual nurse) there had been a complaint that in transferring from my wheelchair to the plinth with the help of my partner this had been in breach of their health and safety procedure – there was no fall, just my partner having to help me to stand and rotate to sit on the plinth. This led to 2 rehabilitation therapists visiting our house to see whether I could stand using a “stand aid” (which I knew I couldn’t do you to my height and lack of upper body strength), but these stand aid was delivered regardless and once place or it even the 2 rehabilitation therapists realised that it would be no use in the catheter clinic as it wouldn’t fit under their plinths.
The latest is that we have been told that the catheter clinic is only intended for use by people who can stand up/walk – this has never been a requirement until now, but suddenly they seem to want to limit those who can make use of the facility. I have repeatedly explained (as has my ‘normal’ nurse) that reliance on district nurses who do not provide a specific time for their visit is useless for me, because I do try to carryout work online and often have videoconferences and/or webinars to attend.
Despite what they say, it seems that because I use a wheelchair I shouldn’t be working! Or rather I should be working because disabled people are just scroungers, but only when it suits.
So that is why I have been very quiet on WordPress and just getting on with things and only posting about books that I have read and/or listened to.
U-tube video of David Mitchell talking to himself about the book “UNRULY”
As well as reading my Kindle book described on my WordPress ‘memory jar’ site (link provided below), I have also been listening to this audiobook which has the sub-title “A history of England’s Kings and Queens” – an unusual choice for me. As I am neither a lover of history nor particularly interested in Kings and Queens, you might ask why I made this choice. Simple – it’s the comedian David Mitchell, who is funny and this book was no exception! If only history had been taught in this compressed and amusing fashion with modern side notes and comments, I might have found it a bit more interesting. It also has the advantage that it is coming to a close just after Henry VIII, Elizabeth I and into the lead up to the Tudors and Stuarts.
Fortunately, my history education at school ended before the exams (O and A levels) at the Victorian era and I was never very good at it. I say fortunately because both the O’ level and A’ level syllabuses got STUCK in the Tudor and Stuart’s era that I found least interesting. So as soon as I could make a choice (at O’ level) I dropped history and instead focused on languages (French & German), maths and the sciences. Although, I was not too keen on English literature, the modern poetry aspects were interesting and although not enjoying the Shakespeare etc. at school I did get to read lots of French, German and Russian authors at home. OK, I liked to be contrary and do the stuff that others didn’t enjoy and I had lots of other interests like sports & amateur dramatics that I continued well into adulthood.
I was surprised by how many of the early names I recognised in my audiobook and just wish that my school memories of history lessons could have been a little more similar and fun to David Mitchell’s rendition! Aah well, maybe it also has something to do with the fact that I am older now and therefore have a wider experience and perspective by which to judge all the supposed “FACTS” that were rammed down our throats at school.
Since becoming ill, I seem to be scared of doing almost everything alone these days, except work because that can be done online from my home. Now that would be a major problem, if it weren’t for the fact that I use a wheelchair meaning that there is always someone (normally my partner) pushing me around.
Well that is fairly obvious to anyone that knows me because …
I can be stubborn, but this also means that I am fairly determined.
Talking to people has never been a problem for me as I am very extrovert. Therefore, I would set about making contact with people who could help me do the things that I still enjoy. I might even employ a personal carer.
Suddenly, I would just have to start using buses, trains and if necessary taxis to get around.
Probably, stop my job because of all the things that need arranging. Oh, and maybe employ a professional chef to prepare my meals as I do like very good food.
So nothing is impossible, but it does remind me how much I rely on my partner. Some things would be much better, because much of my anxiety comes from not doing things that might upset my partner (who is an introvert, control freak and wants to do everything himself).
I’d really rather not consider the possibility, but what will be, will be and I will just adjust my life accordingly.
This will be quick as I don’t really have any stunning “crazy business ideas”. Probably the most “crazy” idea that I had and have already done and moved on, was refusing to retire on medical grounds from my previous job and instead setup my own business as an IP attorney having never worked outside the safe environment of an existing large company/organisation and doing everything myself – manager, finances, Patent Attorney and paralegal all rolled into one. Not very interesting but the best I can offer.
This is just a simplified list from the post on my “memory jar” WordPress site, so if you want to see the whole tortuous and very long (for me) story have a look at:
South Wigston College of Further Education (Leicester) : Practical training in metalworking
Imperial College (University of London) – South Kensington : BEng in Mechanical Engineering
Queen Mary and Westfield College (University of London) – East End : Certificate in Intellectual Property Law
You may notice a significant change that took place between items 2 & 3 in the list above. This was the result of a career change from Mechanical Engineer to Intellectual Property Attorney. Although not planned, this has allowed me to continue working even after I had a major change in my health (developed and incurable and progressively debilitating condition – Multiple Sclerosis) and now have severely reduced manual dexterity and use a wheelchair. Fortunately, I have been able to work entirely on-line using voice recognition software.
I enjoyed my work for engineering companies but I think it would have been much more difficult and restrictive trying to continue in this line of work. My work in Intellectual Property has opened an opportunity for me to use and explore all the resources available online, which are many and constantly evolving. Therefore, my work really has become a means by which I can maintain my health through constantly learning new systems and having a very flexible work schedule. No more fixed working hours for me and refocusing my mode of working from “time” to “activity” based. So achieving a set number of tasks irrespective of how much time I a lot to each task works best for me and allows me to slot “work” around medical appointments and physical exercise practice.
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!)
Stairs – BEFORE
Stairs – AFTER
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 …
Well this is going to be quick and probably consist of a bulleted list (again), because not very much happened really.
JULY:
We had a spell of good weather, you could even say we had a proper summer and it was even extremely hot for a couple of weeks.
I did 5 webinars to help fulfil my work CPD requirement.
We went to 2 events at the Cheltenham Music Festival both on Saturday, 13 July – the first featuring a discussion with Guy Barker (a jazz musician) + another rap / beatbox improviser discussing the areas of the brain involved in improvisation (so a bit science-based too) and the second featuring Wynton Marsalis (another jazz musician). None of the other classical or world music events appealed, but it means that we will manage to attend all four Cheltenham Festivals (Jazz, Science, Music & Literature) in 2019.
I enjoyed a couple of self-indulgence sessions having massage and separately having my nails painted.
Having tried an Audible 3-month trial with a Douglas Adams sci-fi book, an Adam Hills (comedian) memoir and concluding with “The Handmaid’s Tale” by Margaret Atwood – so I thought I had covered a wide range of books – I decided that I really didn’t like listening to other people reading books to me and much preferred to read them myself, so that I could apply my own interpretation. I’ve subsequently bought a copy of “The Handmaid’s Tale” for my Kindle, because I think that I would enjoy reading it.
AUGUST:
The weather deteriorated – still warm, but intermittent rain and unpleasantly humid.
I started to have two 30 minute hand exercise sessions (privately) each week to try and improve my dexterity & grip, with a lady working as a rehabilitation and physiotherapy assistant at our local hospital. The lessons are held at our house, which helpfully lies almost midway between the hospital and her house meaning that she can stop off on her journey home most of the time.
For work: I had 1 more webinar and I spent some time contacting my Clients & catching up with my online Financial & IP work management software.
As I warned you – pretty mundane and not very interesting really. However, next month we are visiting my parents in France and in October we can look forward to a full programme at the Cheltenham Literature Festival … so there are more interesting posts to come.
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.
Me in bed & TV
Debra hanging from ‘crane’
Debra leaves the bed
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.
bibbysmith 