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 …

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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

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