Category Archives: FUN

… 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).

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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 …

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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).

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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.

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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.

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Tickets for the Cheltenham Literature Festival

Christmas to January 2018 – here we go! (Delayed by 2 intervening posts)

Now after a dreadful end (September, October & first half of November) to 2017 – note: December & Christmas not included – I didn’t really feel in the mood to write another blog post until now. The run up to Christmas was busy (particularly for Kevin, who painted the large expanse of blank wall in our bedroom – it’s blue again, just like in our old house). We also ordered and hung lovely lined curtains at the windows in the bedroom, which have been bare up to now and Kevin finished the strip at the base of the skirting, covering the expansion gap left around the wooden flooring.

So now, as Christmas was being held at our house again (because of aforesaid bad few months just preceding the festivities), we could start on the Christmas preparations – tree, decorations, presents etc. After all it was still only mid-December and last year we hadn’t even managed to buy a Christmas tree until 23 December ! I’m afraid I don’t have any pictures of the Christmas tree/decorations etc. – we were having too much fun. My parents were staying with us (apart from a couple of days when they visited some old friends, one of whom was recovering from an operation). Kevin’s parents and sister came over to visit for a lovely meal on Boxing Day and unfortunately, there is photographic evidence (see below).

  

(Gosh I hate photos of myself, but Kevin’s sister has the right idea because she doesn’t appear in any of the photos – taking on the photographer’s role.)

Then we had a visit from my cousin Jeff and his wife for an evening meal again, but fortunately/unfortunately there are no photographs to immortalise that event. So, Christmas & New Year 2018 went much better than expected and our cat was really lovely and friendly to everyone, which I guess is a nice way to remember him (see previous post, where it all went rapidly downhill during the first few weeks of January and we were forced to have him put down at the vets – see previous post.)

“YOU BEHIND THE ILLNESS”

A random post inspired by – ‘trippingthroughtreacle’ … Here goes  …

Four places I’ve lived:

  1. Leigh–on–Sea (really Southend), Essex
  2. South Kensington (& Chelsea & Putney), London – I know that’s cheating, but it was all while I was at studying
  3. Leicester (& Peterborough) – yet more cheating !
  4. Bristol – Apparently, a city & a county (never knew that, I thought it was in Avon)

Four places I’ve worked:

  1. GEC Research labs.
  2. Haiste Consulting Engineers
  3. UK Ministry of Defence
  4. Crown Packaging UK plc.

Four favourite hobbies:

  1. Attending Festivals in order of preference and surprisingly timing during the year (Jazz, Science, Music & Literature)
  2. Exercise (yoga, gym & assisted exercise bike)
  3. Visiting the countryside
  4. Reading

Four things I like to watch:

  1. Lucifer (Amazon/Fox)
  2. Mock the Week
  3. QI
  4. Sport – particularly tennis & athletics

Four things I like to read:

  1. Lots of different books (both fiction and non-fiction)
  2. Prospect magazine
  3. Facebook posts
  4. Other people’s blogs

Four places I have been:

  1. Québec, Canada
  2. Sydney, Australia
  3. Berlin, Germany (+ lots of other cities too)
  4. Copenhagen, Denmark

Four things I love to eat:

  1. Chocolate (preferably dark)
  2. Pasta & noodles
  3. Fruit and vegetables
  4. Indian, Asian & Persian food (OK, any good home-cooked food)

Four favourite things to drink:

  1. Fruit juices (any fruit)
  2. Tea
  3. Coffee
  4. Smoothies

Four places I want to visit:

  1. Norway
  2. Japan
  3. Russia
  4. China

Four bloggers I’d like to tag:

  1. em from think in decimals
  2. Mark from One Man and his Catheters
  3. emaweston from aheartbreakingmsblogofstaggeringgenius
  4. Hannah from stickmancommunications

Missing September/October & Cheltenham Literature Festival

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.]

SILENCE … BUSY … CHELTENHAM FESTIVALS

Sorry about the long hiatus. I’ve been very busy since the beginning of May, so there’s going to be a flurry of posts yet again! A lot has been happening, but after a concert yesterday (Cheltenham Music Festival), I now have the ideal excuse to arrange my posts by subject matter. So let’s start with the Cheltenham Festivals – that’s Jazz, Science and Music in chronological order. But I shall handle them in reverse order, as that’s the order I can remember them best.

Cheltenham Festivals – tickets (Left – Right: Music, Science & Jazz)

After a fairly rubbish day, we rushed off to Cheltenham for a meal at Ask Italian before venturing into the “Pillar room” at Cheltenham Town Hall …  ah

…  and now that concert wasn’t yesterday either, it was well over a week ago! Still, I shall carry on regardless even though that music concert is fading into the distant memory as well. It was great fun – a combination of baroque and folk musicians. There were bagpipes, pipes and recorders, fiddles, cello, harpsichord and something indescribable (well see the picture below). A sort of lute type thing with a very large extension piece having “sympathetic strings” – I think. Unsurprisingly, his instrument with extra long extension piece got lots of enthusiastic interest during the 15 minute drinks break … and a fairly dubious posting by Kevin on Facebook which questioned whether he was trying to “compensate for something”.

So now passing swiftly backwards to the 2nd week of June (you must remember it, it was the one with the rushed general election in the UK and I’ll post a picture about that too – I wonder if you can guess which one!) … straight back from holiday – more about that in a separate post – and there we were at the Cheltenham Science Festival. For once, the weather was not too bad and we had glorious sunshine (for a day), lots of wind (nearly every day) and some intermittent, light rain (which is much better than normal).

Now it is questionable how “accessible” the polling station really is, when this notice is pasted on a closed and seemingly locked door which can only be opened from the inside. Thank goodness I have a Kevin, who can enter the polling station via the main entrance and then open this fire door from the inside!

 

… And this is the day with the nice weather! I am only looking rather concerned, because we are waiting to enter the tent in which the “overambitious demo challenge” is due to take place and that’s where lots of things tend to start flying about. This is one of the few times when being in a wheelchair and located at the front is not necessarily the best place to be!

Now my last festival is actually the Cheltenham Jazz Festival which is one of our favourites, but it took place at the very end of April / beginning of May. Therefore, I can remember very few of the concerts – they were all good – and I don’t have any photographs. I remember the Saturday though, as it was extremely tiring and we attended 7 different events, starting with the “Trondheim/Birmingham jazz exchange” at 11 am and concluding with a concert at 9 pm at night. To put this in perspective, it takes us about one hour to drive to Cheltenham and back, it takes a while to find parking and so this day started about 9.45 am and didn’t finish until after midnight.

Start of 2017 – what’s new?

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).

All set – before ‘Black Velvet’

I leave it to you to make up your own mind!

Party in full swing – after ‘Black Velvet’

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!