… Back to the ‘new’ bathroom … Next the tiling gets done …

First fit finished by the plumbers, tilers due tomorrow (Tuesday, 05 February 2019) at about 7.15 a.m., because apparently they prefer to get started early so that they can leave early too. Apparently, they have been known to arrive to jobs at 6.45 a.m., but helpfully, our plumbers had warned them not to arrive until after 7 a.m. so that Kevin had a chance to get up before their arrival and that then I (Debra) may still have to disturb them to pass across the corridor from our bedroom to my office.

Floor in and raised – a millimetre or two lower than Kevin would have liked, but have to work with the thicknesses of the boards available (plus when we had the landing levelled the carpenter deliberately inserted a separate removable strip by the doorway precisely so we could adjust for any slight differences in the level of the bathroom and landing).

So the tilers arrived to schedule and rang the doorbell at 7.15 a.m. to be let in by Kevin (apparently they had arrived before 7 a.m., but as instructed they had sat in their van outside, listening to music). In fact, the radio remained on all of the time that they were working. As expected, they left early having completed most of to walls and promising to return to finish the rest at about the same time the next day.

Shower area with former for shower base
Sink area ready for sink
Window including waste outlet for toilet

Next we come to the non-slip safety flooring, which led to a problem with the contractor chosen to fit the specialist safety flooring. Kevin’s thoughts / discussion with the plumbers on how to resolve the problems with the AKW wetroom former and drain cover – as AKW had been no help whatsoever!

Kevin – The best options are either to improvise and work with the bits we’ve already got – if Step Floors are happy with that – or to replace the former. The gulley cover AKW supplied comes in three parts – a frame that bolts down into the former and is meant to go under tiles, a surround that is meant to be cemented on top, and a drop in drain cover. Obviously the surround is useless with a safety floor, but I wonder whether we can use the supplied frame, still bolted into the former, but on top of the vinyl floor to clamp it down. Step Floors weren’t happy with this idea initially, because the frame is cut away in the extreme corners, meaning the vinyl would only be clamped along the sides, with a gap for water to leak through in the corners. However, what is the issue here – if it leaks in the corners the water is only going to go into the gully anyway, which is the whole point of a drain! I guess the issue is whether the water could get back up under the vinyl in the corners. We’d also need to file off the edges on the frame as they are square, sharp and not meant to be exposed, but that’s a minor issue. I guess it all comes down to whether Step Floors are happy with this.

Plumber – That was my thought too. How can we make the existing tray work? I had already phoned step floors and requested their fitter to call me to see want he would be happy to lay on that works for all parties.

Current plan – both us and the plumbers, so we’re both on the same wavelength – is to collectively beat up on the flooring contractors and tell them to stop being wusses and improvise with the bits we’ve got.
Arranged on Tuesday, 12 February that the floor would be done Wednesday (13 February) afternoon. Instead, we got a call very early Wednesday morning asking if they could come in first thing to do some prep work. Supposed to be just 30 minutes – instead took 2 hours to lay a very fine screed to cover up all the screws in the floor. Impressed that the guy could trowel on such a wafer thin layer of cement. Main floorers followed shortly after to radius the corners, lay the floor and weld the joints. All done in about 4 hours. Looks good!
Shower area & that pesky drain!
Specialist non-slip flooring done.

Some random ‘things’ that have also been going on …

Prospect Place Conservation Area Trust – Meeting (Wednesday, 23 January 2019)

Unfortunately, I (Debra) could not attend this meeting because it was in a local church, which was not accessible for my wheelchair. However, from Kevin’s report it sounded like an interesting meeting with some ‘wacky’ ideas, which will probably come to nothing but sounded fun anyway. Here’s a quick rundown:

  • How do people know that the “Prospect Place Conservation Area” even exists?
    We’ve had a lot of builders in recently as we adapt our house for Debra’s wheelchair, and when they found us the reaction is – almost universally – “wow, I didn’t know any of this existed”.
    What can we do to signpost the area, both for locals, visitors and those just passing through, to indicate that “hey, this is somewhere special – treat it as such” ?
    It was mentioned that Lansdown Road (opposite us) has a 20 mph limit, but what has always struck me about that is not the limit itself, but the signage. The signs don’t just show the speed limit but are also marked with the name of the zone (“Lansdown”, not “Lansdown Rd”, as if this is an area or zone in its own right). Regardless of whether a 20 mph speed limit can be obtained (or is even necessary), I wonder whether signs could also show and demarcate the boundaries of the conservation area, advertising its existence to anyone passing through.
    Looking further forward, beyond just signposting the area, I wonder if information boards explaining a bit more about the area might be a worthwhile subject for a grant request ? If permission were granted, the eastern end of stone wall marking the old Affleck works (by the double yellow lines – just opposite our house) seems like a reasonable candidate location for such information, particularly – as Kevin learned last night, that it marks one of the entries into the conservation area.
  • Moving onto online awareness, you mentioned that you were looking at setting up a web site for the CAT. But a web site needs a decent domain name … a quick check says that is available (as are a wide variety of similar domains). I’m (Kevin) more than happy to assist if you need any help here in registering the domain name you choose. Once you’ve got a domain name, you need some services to back it up. Both Google and Microsoft Office 365 have free offerings for charities, but Google’s is more extensive, and as you are already using gmail for the current CAT email, it would also be familiar. Google For Non-Profits offer the full Google suite (so Gmail, Calendar, Drive and so on, but all branded with your own domain name, rather than just including Google Sites, which offers an easy way to get a rudimentary web site up quickly as a starter. Google Maps would be an easy and obvious way to present information about the area. Google also offer more esoteric services for non-profits, including free Google AdWords advertising (complete with click-thru revenue if anyone actually clicks on the advert, although that would be negligible). Again, I’m (Kevin) happy to offer assistance here if needed.

  • That leaves social media – It would be nice if any Facebook Groups could be gatewayed to somewhere external to Facebook for those who don’t use Facebook, but Facebook don’t exactly make that easy.

  • We (Debra & Kevin) loved Stuart’s suggestion of bringing back the original name of “New Providence Row” for the eastern end of South Street – it would certainly make our postal address sound more impressive ! However I suspect it’s also impractical and possibly disruptive as changes to the PAF (the official postal database) propagate out to all its different users.

Not your average toilet …

Oh, just look at all those wires and bits:

Side view of new toilet
Rear view of new toilet

Not going on the wall yet – I think that’s for the final fix – but out so we can agree what height to set it at, and so the plumber can get the waste, pipes and electrics in the right place. I “love” the fact that the toilet controller appears to have a diagnostics port, so you can plug a laptop into your loo to see what’s going on !

Also pleased to see it comes with the clear plastic splash plate Geberit use when demonstrating the loo – that means we can test and run cleaning solution through the spray bar without jetwashing the ceiling.

Snow & Igloos …

At the end of my last post, I left you with the tantalising prospect of forthcoming bad weather – SNOW. We went to bed after a light, fluttering of snowflakes, but still enough to settle.

Night time after slight flurry of snow

So we went to our warm, cosy bed with the possibility that we may awake to some snow … And the weather didn’t disappoint!

View from our bedroom window (upwards) upon waking up


View of our garden upon coming downstairs
All snow, so down tools.
Unfortunately, no work today!


Well, unsurprisingly it was not going to be a work day and with the weekend to come, perhaps it might have started melting before more work could commence.

So what could one possibly do? … I know, it’s time to start thinking about building an igloo – and here to our rescue came our neighbours from the house behind (and we just happened to have a lovely, big window from which to view their efforts). How best to build an igloo? Now we don’t have ice from which to cut nice building blocks, just lots of mouldable snow. Trial 1: Let’s just free form a wall by pulling all the snow together – No, that is never going to work when it comes to building a high wall, let alone forming some sort of roof. Wait for inspiration … Out comes an old rectangular, recycling box into which we can pack the snow down to form ‘snow bricks’ – Yeah got it, that’s working really well !! And so the walls slowly begin to rise.

Voila – a completed two-person igloo
Fun in the snow courtesy of our ‘back door neighbours’


Yes, just about room for two people


Well that was fun! In the meantime, Kevin has started the practical snow moving by first clearing the pathway leading to our front door and then clearing the pavement and adjacent road to our driveway, so that he can at least get the car out and facing in the right direction.

Guess which is our house: Pavement & turning circle – cleared
Pathway to front door – cleared

The bathroom – So now the rebuilding work can start …

WEEK 2, (28 Jan 2019) first day’s work – building a new wall over the previous approximation of a wall, squaring everything up so the wet-room former fits flush. We’ve also got the partition in place for the shower. The wall has had to be built out into the room as the structural beam from below protrudes up above floor level in the bathroom – previously this was hidden under the bath and shower tray, but this won’t work with a one piece sealed floor:
Wood skeleton for the NEW walls
Green moisture resistant plasterboard waiting to form the NEW walls

As this might be the last update for a while (as will become apparent at the end of this post), and as today has further continued our adventures in Bongo-bodge land, then here goes …

Two plumbers here most of today (three at one point). The plan was to plasterboard out the walls and level the floor up with plywood. Well parts of that went to plan – we’ve now got several walls boarded out in fetching/retching green moisture resistant plasterboard.
Walls for the new shower unit
… but then there’s the wall behind the old sink …
The plan was to remove the original plasterboard from that wall and add a reinforcing panel to support the cantilevered sink. However taken the skin off revealed two more entries in our Bodging Hall of Shame:
1) The “insulation” inside the wall consisted of green carpet tiles and what looks like old pillow or cushions – novel !
2) The wall itself was floating and not actually attached to anything at the base – you could move the wall with a gentle push. Rather than sitting on top of the wall and lintel between the living room and the kitchen downstairs, it actually sat directly on the joists in the living room without being attached to them. The wall was being held in place by the sink unit and work surface, rather than vice versa. As our plumber described it, this was just “total dogshit”.
So they’ve had to box out this wall as well, at least the lower section. This isn’t too bad in that it hides the pipework and provides a useful ledge in the alcove where the sink is going, but it does mean the bathroom continues to shrink as the new walls move inwards to hold up the old ones …
Boxed out area for the new sink – So the wall supports the sink & not vice versa

And then it started to snow. So far we’ve only had the the lightest of dusting, but if it does snow more overnight as forecast then I doubt we’ll see our plumber tomorrow given he lives up in Wanborough. Fortunately perhaps he’s got a bit more time to get the first fix finished, as the tiling contractors, who were originally scheduled to come in yesterday, and were then moved to Thursday because the plumber wasn’t ready for them, have now postponed this job till next week, as they’re running late on another job.


Work on the new, accessible bathroom begins – AT LAST!

FINALLY … On 21 January 2019 our usual plumbers started to dismantle our main bathroom (after many wasted discussions with supposedly ‘specialised’ accessible bathroom installers – specially adapted for disabled people – throughout 2018, which only highlighted their flaws and inability to cope with the basics of design, design drawings, provision of professional quotations and the fact that they ‘sort of’ quoted impossibly high costs). Anyway, after lots of frustration and nothing happening, we decided that it was about time to contact our ‘usual’ plumbers and see if they could handle it – “of course” they said and in retrospect we should have just contacted them in the first place!

STEP 1: Delivery of a skip to our substantial parking area (compared to our neighbours anyway) through the narrow-ish gap between the two, protected trees guarding the entrance – when I say ‘protected’ trees, they really do have a preservation order on them, meaning that we have to notify the Council and get a skilled, tree surgeon to carry out their bi-annual pruning. Now, I know that they must be used to it and we were only having a medium-size skip delivered, but the lorry driver’s ability to reverse his lorry down our narrow, one-way street and manoeuver the skip into the corner of our parking area – thus still allowing us room to park our car – was really quite impressive. (Sorry, no photos or video, but you really had to have been there to appreciate the skill of the skip lorry driver.)

STEP 2: The plumbers arrived at 8 a.m. sharp to have a “smashing good time” removing the shower, bath, toilet, sink unit arrangement & old tiling. And this is when the fun really started, as they uncovered what a truly horrific job had been done when the old bathroom had been installed – it’s no wonder that the previous shower leaked and the radiator in our adjacent en-suite bathroom just didn’t work. Here’s a bullet list outlining the horrors (there’s just too many to go into in detail):

  • The tiles over the bath were attached to a sheet of plasterboard, that had in turn been attached atop some old woodchip wallpaper by the occasional dab of plaster.
  • The underlying wall wasn’t sound either – random bits of timber but not enough studs or noggins to stop the wall flexing. So bodge on top of bodge. The wall needs rebuilding and at the same time building out, so there’s space to run the myriad of pipes behind the new wall.
  • The old plumbing was of course insane – we already knew that from what we could see under the bath, but it doesn’t make any more sense now the bath is out and you can see clearly where everything is going. There’s just a mess of different pipe types and materials and bores and connectors where the whole thing has been done and redone and re-redone and the en-suite spurred of it as well, to boot.
  • The wiring is pretty silly as well, with a fused spur unit hanging around looking bored & buried within one of the stud walls. Presumably at some point there had been an electric power shower, but when that was removed the wiring just got stuffed inside the wall.
  • The final amusement was the floor. Smashing up the files and lifting the sub-floor revealed … a rather pretty, very expensive and rather well laid Amtico floor, still in immaculate condition. So somewhere between the original 1980 conversion (which was a bodge), and the 1998 renovation (which was also a bodge), someone spent some money to do the job properly. Go figure.
This is what it looked like when they removed the old shower, bath and tiles … you can see the wood-chip wallpaper that was underneath a layer of plasterboard underneath the tiles.

What you can’t see from that picture is that there are no studs at all in over a metre section of the partition … clearly the builders responsible for this had previously been working on the Pinewood film lot, building stunt walls so your action hero can come crashing through the wall unencumbered by anything approximating a structure …

The original pipework, exposed after removing the bath … some creatively curly bits of copper in there:
Charlie inspecting the Amtico flooring discovered underneath everything:


Now, I’ll just pause for a brief moment to allow the aforementioned horrors to fully sink in!

Just a brief aside: Chatting with the plumber, Kevin said that he must see worse … his comment was no, not really. This is about as bad as it gets.
End of week 1 – now all the pipes are in the right place, together with all the wiring. Boringly straight really … at least the radiator in our en-suite next door now works properly, for the first time since we moved in:

Bravo to the plumbers and electrician, who have worked extremely hard to dismantle, destroy and rework the pipework and electrics. I think their rebuilding work (week 2) deserves a separate post!


2019 – Return to Blighty

So, having arrived back from France and unpacked the car, Kevin spent the next couple of days dismantling and taking down all the Christmas decorations (closely supervised by Charlie – of course).

Charlie the supervisor / manager


“I am not sleeping on the job – this is hard work!”


We spent the next couple of weeks just catching up with all the usual, run-of-the-mill activities – Yoga & Gym at the local MS Therapy Centre, Hair cut and gel nail polish removed (much to my relief, as my fingernails are literally as “tough as nails” and were starting to dig into my hands every time I made a fist).

I had my first visit of 2019 to our house, from a potential inventor – as usual, he was very enthusiastic about his idea but unfortunately it was not something with which I could help him obtain useful Intellectual Property Rights (IPR). However, we did have a very pleasant chat about his concept, what Intellectual Property (IP) would be generated automatically and what (if he ever decided to do anything more in the future) he might like to think about regarding how to obtain any IPR, whether it would be useful for him or whether he just preferred to ‘tinker’ with ideas that were of benefit to him and him alone in carrying out his work / odd jobs. Still, it eased me back into thinking about work and what I needed to catch up on.


Christmas 2018 … New Year 2019 (a two centre / country approach)

Yes, we celebrated Christmas 2018 (with both our parents on 25 & 26 December) in England – where Christmas is the bigger celebration – and we celebrated New Year 2019 with my parents in France – where New Year is the bigger celebration. However, that is not really the reason for our two centre celebrations, it’s much more mundane than that – the simple reason was that I had a regular medical appointment which just happened to fall in the middle of the two celebrations and the NHS nurse providing the service required no matter what was working during this period and if she was required to work, we felt that it was only right that we should make the effort to attend the appointment.


Christmas lights (outside)
Christmas stars (upstairs)

All went without a hitch, with my parents arriving from France in the evening of 22 December and departing in the morning of 27 December (the day of my medical appointment), Kevin’s family spending Boxing Day with us all, meaning that we get the chance to use our large table at the rear of our huge living room and here are some photos from our traditional English Christmas.

Christmas lights (indoors)
Christmas tree & presents

NEW YEAR 2019:

And now it was our turn to make the ferry crossing from Portsmouth to my parent’s house in France, which we did on 29 December (giving my parents a couple of days in which to prepare for our arrival – late). This also gave us time to drop off the key with “Home Loving Cats”, who were looking after Charlie whilst we were away (and so the only photos you’ll get during this period are those of Charlie).


New Year also went fairly smoothly, with us eating far too much and as the weather was not good, I have very few photos (i.e. none) to share. We left France for the return journey to the UK on 4 January 2019.


2018 moving on to 2019

Now, I know that I am really awful at keeping a record of what’s happening (as I’ve said before), but this is just too bad! OK, I’m going to try and reconstruct the intervening 6+ months in date order and in several posts, but I can’t swear that it will be completely accurate as I am having to use my computer calendar to remind myself of what has been going on. Where there is something which deserves a more detailed discussion, I will try and include a separate post about that particular occurrence.

I will start (in my next post) with my first ‘detailed’ write-up of Christmas 2018 moving (literally) to New Year 2019.

Now to the more mundane part of this post (gleaned predominantly from my computer calendar & looking at my online ‘exercise’ spreadsheet). That last phrase has made me realise that you probably don’t know that I love to record lots of things in a spreadsheet, containing everything from the fruit and vegetables that I’ve eaten each day, my daily physio exercises, the exercises that I complete in the gym at my local MS Therapy Centre & a record of my performance at home, on my assisted exercise bike. Mad, I hear you cry, but that’s just me and seemingly I am much more disciplined at maintaining my spreadsheet records, which I started in around 2009/2010, than I am at maintaining a diary or blog.

As this bit is rather ‘boring’, I have no pictures and hence very little detail, I am afraid that I will now revert to another of my pet preferences – a bulleted list:

  • I completed the “wheelchair driving test” in the monstrosity that is my huge, personalised & very complicated electric wheelchair. I kid you not, I actually had to take the wheelchair outside (with my allocated wheelchair OT & the technical guy making all the adjustments as necessary), drive it down my street, do the Green Cross code at the drop curb and then cross the road when safe to do so – not difficult in my case as most of the street is one way, there are virtually no cars and people often just walk down the centre of the street – then turn around through 360° and make the return crossing to the drop curb before driving back to my house and returning back inside.
  • We had a quick visit from my parents before their trip down to various English friends + a few days stay upon their return in readiness for their trip back to France via Portsmouth.
  • I did a few webinars, just keep my CPD for work up to date, drafted and filed a few GB patent applications & did the necessary paperwork including finance.
  • Finally, I had some massage sessions at the aforementioned MS Therapy Centre & my hair cut / fingernails polished in readiness for Christmas.

There, I told you it was pretty mundane and so a bulleted list was quite sufficient! (For anyone interested and following on from my last post: in November 2018 I actively cycled 195 km & in December 2018 I actively cycled 205 km – made up of cycling about 30 mins to 1 hour every day).


… Memories & new challenge for end 2018

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..

“Assisted” exercise bike & TV

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.

Stage 1 (2018) - Swindon to Leicester
“Virtual” cycle route from Swindon to Leicester via National Cycle Route 41

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).

FAMILY · FUN · HEALTH · HOUSE · Multiple Sclerosis · PAIN

Memories, about turn & moving on

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 …

My “old” office – now Kevin’s + “Tiger bamboo” flooring

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).

Monster electric wheelchair

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.

Level first floor & banisters, Newel posts, spindles etc.

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.

Tickets for the Cheltenham Literature Festival