Turns out some wheelchairs are way nicer than others… and spending all day sat in a better one has made a big improvement to both my physical effort and self confidence. Who knew?!
Call me a cynic, but when I moved into a wheelchair four years ago, I just thought they were all much of a muchness. Sure, Paralympic athletes had super high tech carbon models, but for the average Joe, any small variations were superfluous. I guess a part of it was my reluctance to accept that a wheelchair was a permanent item in my life – my new form. I didn’t want to invest any time or money in it. I did the same thing when I used crutches; rather than buying some slightly nicer ones, I stuck with the NHS silver sticks for what turned out to be three years, rather than a temporary relapse.
This is taken from the “THINK IN DECIMALS” WordPress site and I really am quite jealous, because I would love to go and get my NHS wheelchair augmented by something that was actually comfortable and I could use to push myself around, which would help my rather pathetic arm strength. Leg strength is much less of a problem due to my assisted exercise bike, which I tried to use almost every day.
My immediate response to this prompt is: I am not brave. It’s all a matter of definition.
Some define bravery as during brave acts like bungee jumping, hang gliding, rock climbing, skiing and so on. On this definition I am not brave at all, as none of the trials listed above appeal to me at all and I would definitely avoid them whenever possible.
Others define bravery as being willing to speak out either in support of your own interests or in support of others. Now here maybe I am “brave”, as I never have any problem in either of these areas. However, I can’t help asking myself whether this is “Brave” or just plain blunt, loud and/or overconfident. All of these traits are something that I have in abundance.
This probably stems from the fact that I am tall and have always been for my age. When I was younger this meant that people often assumed that I was older than I really was and as I got older, I either had to stand tall and speak up or try to hide and not be noticed (difficult when you are head and shoulders above everyone else!) Unsurprisingly I chose the former, probably encouraged by the fact that I am an only child and so had no competition for my parents attention from any siblings.
I’ve noted that some earlier posts have discussed being “brave” in the context of willing to take risks. Here, I can definitely say that I am not in the group of people willing to take risks – I am and always have been “risk averse”. So NOT brave if this is how you define being brave.
In my 30s, I was diagnosed with Multiple Sclerosis (MS) just as I was starting to progress in my career, which became gradually more stressful over time. This led me to having to use a walking stick, 2 walking sticks, crutches and finally a wheelchair. I’ve had to take some very powerful medications (some involving giving myself injections) and also undergone a whole battery of tests and being prodded about.
And this leads to my biggest disagreement with some people’s definition of being “brave”. The only time I am constantly told that I am “brave” is that I have continued to display a jolly demeanour despite the falls and bruises and obvious deterioration in my physical health – BUT this is not “brave” at least in my vocabulary, because it is just doing the best you can coping with the cards that you have been dealt. I do get miserable, but just don’t show it because it is not something that people want to see. I miss the things that I used to be able to do, but there is no use dwelling on it and you simply have to look for other things that can take the place of what you have done before. And it certainly opens your eyes to a greater understanding of what other people have to face every day.
It’s opened up so many opportunities to make use of my naturally loud & confident personality – I can now truly give “a voice” to those who are so much less fortunate than myself and are unable to use their own voices. NOT “brave” perhaps but having much more empathy.
Postscript: Well having spent most of today trying to sort out all the mistakes I have made on trying to post each day for the bloganuary challenge – I may not be BRAVE, but I am tenacious!
1 January 2023: What is something you want to achieve this year?
Mmm … Now that is a difficult one, because there are so many things that I want to achieve this year.
However, as one of my goals is to actually keep up a regular blog about all the many things that will and are happening – I suppose that this is the most relevant post to set the blogging ball rolling. If I can’t even manage to complete a short piece each day in January (in response to a prompt), then I know that it will be a tough goal to achieve.
So taking one day at a time that is 1/31 completed – HURRAY!
Postscript: After an epic fail on just day 2 of the bloganuary challenge – My main goal is to learn how to setup a WordPress blog!
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 …
The more observant amongst you will realise that September has ‘disappeared’ despite my last (rather mundane) post – Also, that I am late with this post as it is nearly the end of November (whoops, just turned December) … and now we are approaching the end of 2019! So much for my ‘best intentions’ of keeping a regular blog on-line. I can manage to keep a multiple page spreadsheet daily, but the idea of having anything interesting to write about each day just escapes me.
Well first, looking back on it I can’t really remember much interesting happening in September – yes, we did visit my parents in France and it was pleasant, but I can’t really remember much else about it. The weather must have been quite sunny, because I have lots of photos from Kevin of outdoor plants and butterflies, insects etc. – I think my summary of September will be just a few of the photos.
AT LAST … THE CHELTENHAM LITERATURE FESTIVAL:
And so we started on Friday, 04 October … fairly gently at first with just 3 events covering “Out of the Woods” (how nature can affect mood/mental health) to “Dark Side of the Mind” and ending with a discussion about “Stories of Statelessness” … so gradually easing ourselves into it, because we knew the following day was going to be all out politics – so either really depressing or possibly enlightening! Our day started early (for us) – midday, with the edifying prospect of a discussion entitled “Populism: The Death of Democracy”, which was surprisingly not too ‘heavy’ and much more interesting than at first feared. We then had a more entertaining discussion with James O’Brien and his views and experience of the bizarre twist of events in the previous 12 months. Then we headed to “The Election Generals”, which elicited (as expected) quite a divisive but interesting discussion. Finally, just to ensure that we should try and consider recent events in light of the past, our last event was called “Don’t Look Back in Anger”. I have to admit that having been somewhat concerned by the ‘serious’ nature of our second day, it really wasn’t that bad at all and provided plenty of issues to think about. Because of my fairly pessimistic view of how Saturday was going to turn out, we had deliberately picked a much lighter program for the Sunday, which started with “Who’s Next for the White House” – very enlightening if not a little scary! Then we continued with a discussion called “Life Off-Grid” – lovely idea, but not very practical for me with medical condition + wheelchair. Our day ended with a very pleasant discussion about Tove Jansson (most famous for her Moomin series) with her niece Sophia Jansson about Tove’s life, loves and island refuge.
Now I am honestly having to look back at my on-line calendar for October to remind myself about the various events that we attended, so apart from those that have ‘stuck in my mind’, I think it only fair that I merely relate the number and titles of the events that we attended. On Monday, 07 October, we started off all ‘arty’ with an event entitled “Ways of looking at contemporary art” (I can’t really remember much except that some items I could appreciate the artistic merit and some I just didn’t ‘get’ at all!) Our next event was entitled “Life on the NHS Frontline”, where the panelists were an ex-nurse and an ex-junior doctor both of whom held their own extremely well and really didn’t need any chairperson / facilitator. Now our final event that day was GREAT! It had been placed in far too small a venue, which was packed and everyone enjoyed it – it makes such a difference, when the main speaker is professional and practised – both of which characteristics were true of Dom Joly. The talk was entitled “The Hezbollah Hiking Club”, which obviously was the title of his latest book (now one of the items on my Christmas list from Kevin’s parents). The talk was interesting, funny and the host kept everything moving along smoothly. As I’ve said it was GREAT!
Looking at my on-line calendar, the next day (Tuesday, 08 October) was a really mixed bag and although I remember that everything was really interesting, that’s about it. Our day started with an event entitled “We Need to Talk about Putin”, the next event was entitled “In the shadow of Vesuvius: A Life Of Pliny“, which was fascinating at the time but I can’t really remember any of the important details. And we finished off with an event entitled “Science(ish): Hollywood Wants To Kill You“, which I think (from memory) was understandably weird. On Wednesday (09 October) we only had two events neither of which I can remember in detail, but I am sure that they were both entertaining. Anyway, the titles of the events were “The Knife’s Edge” and “The Art Of Trees“. Thursday, 10 October started with the delivery of our new two seater sofa and matching two chairs in the morning, before we immediately set off for the Literature festival and again the first two items I will just list the titles, because I cannot really remember much detail – “1919–2019: The Irish Century“, “Lucian Freud“. We finished the evening with a highly entertaining discussion with Louis Theroux, which we learnt had SOLD OUT within about the first 3 – 5 minutes of going on sale. As members of the Cheltenham Festivals get a few days head start when booking, this probably meant that the entire audience were members of the Festivals! On Friday, 11 October we saw the following events, which were all good but again I cannot really remember the discussions and so the titles will have to do – “The Best And Worst British Prime Minister?“, “NATO At 70” and “Melanie Reid: The World I Fell Out Of“.
Now as I hope that you can appreciate, we were starting to ‘run out of steam’ and although we had booked for 3 events on the Saturday (12 October) we bowed out of all but the first event– “The Times Debate: Is the Party Over?” with ex-Conservative MP Rory Stewart (now standing as an Independent in the contest for the Mayor of London) and Labour MP Jess Phillips, which ended up as the only event we attended as Kevin was beginning to come down with a cold. The discussion was very civilised and particularly enlightening regarding the resources required to run as an Independent and the restrictions on taking such action and leaving an established political party where you don’t necessarily agree with the leadership, but require the backup of the party structure because of financial responsibilities and the fact that that you feel a better chance of reforming the party from within rather than from the outside. In retrospect, I found this position comforting when facing the reality of “Tactical Voting” in the GE that was announced in November.
So yes, the Cheltenham Literature Festival was a mixture of fun, weird stuff and lots of Politics! As this post has taken so long to compose, I think that I will leave the turmoil of the end of 2019 until my next post – which I will try to do before the New Year!
Well this is going to be quick and probably consist of a bulleted list (again), because not very much happened really.
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.
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.
Continuing my efforts to catch up with the important events that have happened so far in 2019, the ‘other’ reason for departure from my parents in France on 4 June 2019 was that we had booked a huge programme of events at the Cheltenham Science Festival. As well as all the usual favourites: the International Fame Lab Finals, the Overambitious Demo Challenge etc., we also attended several events related to climate change and of course events relating to the Periodic Table of Chemical Elements (both serious and some more light-hearted). General trivia: 1869 is considered as the year of discovery of the Periodic System, Dmitri Mendeleev being a major discoverer. Thus, 2019 was the 150th anniversary of the Periodic Table of Chemical Elements, hence the number of events surrounding this ‘anniversary’.
Now Cheltenham is also known for Gustav Holst – indeed there’s a statue of him in Imperial Square at the heart of the festival. And this being a science festival, there’s a particular affinity between the festival and Holst’s Planets Suite … and so they’ve built an installation around the statue representing planets.
Thing is, this must be the remixed version of The Planets Suite – not to mention cosmology itself – as I don’t quite recognise some of the planets. Apart from Earth as the largest, we also have Planet Orange Glitterball, and the slightly dented Chinese lantern planet ..
Only at Cheltenham Science Festival … we’ve just ended this evening with a Scotsman in a kilt demonstrating the various configurations of electron orbitals within an atom through the medium of samba dancing (!), followed by the audience collectively singing Happy Birthday (and a cake with magnesium ribbon candles) for the 150th “birthday” of the periodic table …
Sounds perfectly normal to me
Signs you’re unlikely to see outside of your local science festival …
– feel free to explore E.Coli, but please don’t touch its delicate structures (!)
– photosynthesis and UV florescent drink [not something I’ve ever seen in a vending machine !]