Category Archives: Multiple Sclerosis

Birthday Landmark – The half-century

So why did my last post say that I was so busy? Well at the end of May was my (and Kevin’s) birthday and for me it was the big half-century ! Therefore, I wanted to do something to celebrate and what better than to try and recreate my 21st birthday when Kevin and I were at Imperial College in London and I was still a happy go lucky student. Now first: On my 21st birthday Kevin, my parents and I got the overnight ferry to Holland and went to Amsterdam (by train) for an Indonesian rijstafel, returning home on the overnight ferry that evening (well we were students and did have to do things on a tight budget!)

Now of course quite a lot has changed in the intervening 39 yrs – I’ve worked (so have more money), I now use a wheelchair (courtesy of MS) and we have a car. The latter is very important, because trains (that we used all those yrs ago) are a bit more difficult to organise now. However, the ferry still runs from Harwich to the Hook of Holland and with the car we could just drive (Kevin really) from Swindon to Harwich and then from the Hook of Holland to Amsterdam. As the picture shows we managed it, had the aforesaid Indonesian rijstafel and a lot more besides. Unfortunately, or fortunately depending on your age, my/our birthday falls during the Whitsun holidays. This meant that I was never at school during my birthday, but has the downside that travel and holidays in general are more expensive. It also means that the ferry gets booked up very quickly and so plan A had to change immediately – no disabled cabins available for the overnight ferry. Still, we are older now and a little thing like unavailable cabins wasn’t going to stop us. Plan B – take a sedate drive to Harwich, stay overnight in an accessible room at the ferry port and take the day ferry across to the Hook of Holland (having a meal on the way, of course), then drive (Kevin again) from the Hook of Holland to Amsterdam. This should have been easy, but was made a little more complicated by having an out of date satnav and the Dutch authorities building lots of new roads. Anyway, after a short skid via the outskirts of Rotterdam, we eventually made it to the Mövenpick hotel in Amsterdam and met up with my parents that evening. Oh, that’s another thing that’s changed – my parents now live in France and were driving across from the west of France via Belgium to a different hotel in Amsterdam, reasonably close by. Upon meeting up, my parents confirmed that their trip across France and hotel were great BUT their journey around Antwerp had been awful (not good for us to hear, because Antwerp was the next place we were visiting & planned to stay overnight on our way back to their house in France).

Now, booking a hotel when you have a disability and therefore require an accessible room is a bit more difficult than you may think. I picked the Mövenpick hotel in the centre of Amsterdam, because it had an accessible room & en-suite bathroom. It was more expensive than we would normally pay, but I must admit that the accessible bathroom was very good. The hotel is actually built out in the old dock area, which accounts for our rather noisy and changeable neighbours (see pictures). I think this first photograph (of the view from our bedroom window) needs a little more explaining: As I predominantly sleep on my back now, I no longer seem to be able to achieve a full, uninterrupted 9 hours sleep each night. I tend to wake up, Kevin helps me sit up and I spend the next hour or so reading my Kindle. This particular night, I woke up as usual and sat there reading when (around 4 o’clock in the morning) I vaguely became aware of noises outside. Upon looking out of the window in the semi gloom, I was surprised to see that there appeared to be terraced houses opposite that I hadn’t noticed when we first arrived. I went back to sleep for a couple of hours as normal and when waking for the 2nd time Kevin commented that there was a lot of commotion outside. He opened the curtains properly and this was the view that greeted us – A cruise ship ! So after getting dressed and showered, Kevin immediately went outside to take a better look. Upon returning to me in the room, we had lots of jokes about “Costa” cruises and whether the captain had really intended to park to park his large vessel outside our hotel. Needless to say, once I had showered and dressed too, Kevin took me outside and we immediately noticed that our hotel was right beside the cruise ship terminus. We met my parents at the coffee shop right next door to our hotel, where I had a lovely freshly squeezed orange juice for breakfast. My parents didn’t want or need anything having already partaken of a rather large hotel breakfast, which was included in the cost of their hotel. Once all together, we set off into Amsterdam city centre via a bridge over the River and we started to have a look around. Neither of my parents had seen an Indonesian restaurant when they had had a quick look upon their arrival the previous day, but we decided to look around and try to locate the flower market (where of my parents’ friend had said that they had found and Indonesian restaurant) … and on the way, I had an apple pancake (another of my fond memories of Holland from yrs ago). That evening, we had sushi in a weird Japanese-style fast food restaurant I’d noticed on our travels that was wheelchair accessible (unlike lots of the traditional restaurants, which were both narrow, all and had steps up to the door – no change there then!) Anyway, as can be seen from the photograph at the beginning of this post – we did find a lovely, accessible Indonesian restaurant and I got my Indonesian rijstafel. The morning that we were leaving Amsterdam (and my parents) Kevin and I went into a cafe in the Information Centre just opposite the Grand Central Station. The cafe was downstairs, but there was a lift and we decided to stop for a drink and lunch whilst waiting to meet my parents. They arrived and also decided to have a drink/look at the menu, where my mother saw the item “Bitterballen” which she decided to order – another fond food memory that we had enjoyed as a family many yrs ago. (Therefore, completely unintentionally, I had appeared to ‘tick off’ 3 items from my imaginary bucket list.)

Next, Kevin and I made the journey to Antwerp, which as my parents’ had predicted was a nightmare journey – roadworks everywhere! Our hotel was right in the centre of Antwerp and once we had managed to negotiate all the major disruptions, we finally made it to the hotel … and had sat have a lie down to recover from what was a comparatively short hop. No pictures of Antwerp, but as you can probably imagine the combination of major reconstruction/building works, removal of almost all dropped curbs and cobbles made our investigations of Antwerp painful for me (in the wheelchair) and extremely tiring for Kevin (trying to manoeuvre the wheelchair over rubble/unmarried pavements etc.) In summary, Antwerp may be lovely in a few yrs time but not at the moment and especially not when trying to get around with a wheelchair or similar. Round 2 finished and onto the round 3, edging ever more slowly towards France.

Round 3 – Mons. Now Mons was lovely and probably had undergone similar building works to Antwerp but a few yrs earlier i.e. a view of what Antwerp may become in a few yrs time. The hotel was lovely and interesting, but again there were lots of cobbles and this time the town was located on a Hill – oh what fun!

      


And there’s really not much more to say – upon leaving the hotel in Mons, we started on the long drive across France to my parents’ house in Normandy. It had been a fun week away and we were now ready for the final ferry trip home (after a few days recuperating in France) via St. Malo … and yes a bit more food !

2 WEEKENDS OF ACTIVITIES & NO POSTS (AGAIN !!)

Sorry for the dearth of posts once again, but I have been doing lots – really!! So now I’m afraid that this will have to be a consolidated post again and also you will have to excuse my definition of a weekend, which includes the preceding Friday too (on both weekends).

Friday, 22 April 2016 we had booked an ‘advice surgery’ appointment with our local MP to discuss our issues with moving house and the implications caused by SDLT announced in the recent 2016 budget. Hardly something to look forward to, but I have to admit that I did look forward to it and it was ‘FUN’ in a rather perverse way. It was raining at the time of our appointment and the MP was running a little late, so we had to wait under the overhanging ‘shop front’, which was fortunately just wide enough to accommodate my wheelchair if I sat parallel to the window. While we were waiting, we noticed several parking spaces being vacated opposite the MP’s office and so Kevin went off to collect the car to be closer in case it started raining even harder at the end of our meeting. Eventually the previous meeting ended and the MP himself came out to greet me, apologising profusely that our appointment was late. He wheeled me into the office preceding all the while to refer to me as ‘sir’ – not a good start for him and in accordance with my ‘evil streak’, of course I didn’t make any admission of the fact that I was actually the ‘Debra Smith’, who had booked the appointment and therefore was not a ‘sir’. Once inside the warmth of the office and upon his observation to his assistant that we were “just waiting for Debra Smith, who was currently moving the car”, I felt it only fair to say that in fact I was Debra Smith and it was my partner who was moving the car. (Not the ideal way to start a meeting in my book, but that’s the reason that I found it ‘fun’ and quite liberating really!) So, we had the meeting, said our piece including pointing out how simply the draft bill could have been written to exclude those people unintentionally (?) hit by SDLT despite having no desire to own a second home or buy to let property, but requiring modifications to their new property before they could move in. For us, we need a lift installed, which has a 6 to 8 week lead time and we did point out that SDLT meant that we were having to take out a loan (for which we pay interest + set-up fees) just to provide HMRC with an interest-free loan which we knew they were required to repay, supposedly within 14 days. We’ll see! Having worked for the MOD (civil service) in the past, I commented that unless HMRC were planning a major recruitment drive, I thought this was highly unlikely! The MP tended to agree.

Meal with Kevin's family

Meal with Kevin’s family

 

Valerie & Maria

Valerie & Maria

Saturday, 23 April 2016: Unusually, we drove into West London (Cheam to be exact) to meet up for dinner with Kevin’s parents, his sister, aunt and eldest cousin. This was a special opportunity because neither Kevin nor I had seen his aunt since she visited us at our basement flat in Chelsea (and that was years ago!). This is because both his aunt Valerie and cousin Maria live in Majorca, Spain and were over for a couple of days because his cousin had meetings in London. I have never met his cousin Maria before, but she is almost the same age as me (she was born in January and I in May of the same year). I thoroughly enjoyed myself, which undoubtedly meant that I was being my usual, extrovert and ‘naughty’ self. (Maria is the one who described to me as ‘naughty’ and she also said something in Spanish which neither she nor her mother were able to translate and I speak no Spanish – however, they assured me that it was complimentary! Mmm.)

 

Now spin forward to the following weekend – Friday, 29 April 2016. The Friday started fairly inauspiciously with me having to go to the hospital for two eye appointments, the first a visual field test (awful – me having to transfer from my stable wheelchair to a very unstable/freely rotating ordinarily chair with no arms – it was terrifying!). This was followed up by the usual orthoptic appointment where the findings were much the same as before, but this time were repeated with my new distance and reading glasses. Conclusion: Do nothing, but repeat appointment in 3 months time. I’m really beginning to wonder if there is any point in these regular appointments as nothing seems to result and I really find them quite stressful. Fortunately, on this occasion after an awful start of the day I knew we were going to see our first jazz concert at the Cheltenham Jazz Festival that evening. We saw Penguin Cafe (lead = son of the original Penguin Cafe Orchestra), which everyone had told me was great, including my father and they were quite right!

Penguin Cafe

Penguin Cafe

Saturday, 30 April 2016 we knew was going to be tough as we had booked to see five concerts starting at 12.00 hrs with the Trondheim Jazz exchange (group 2 were excellent and really different – it made you feel a bit sorry for groups 1 and 3) and ending with ‘the Printmakers’ at the Parabola Arts Centre (Cheltenham Ladies College), my favourite venue, at 9.00 p.m. It was a really enjoyable, but very tiring day, not helped by a mix-up in booking to eat at Pizza Express, which left us very little time to change venues and eat at Ask Italian. In fact, we had to slip out early from every one of the last 3 concerts, just to give us time to scurry between venues.

Zoe Rahmen Courtney Pine

Zoe Rahmen & Courtney Pine

Courtney Pine

Courtney Pine

 

 

 

 

 

 

 

 

Fortunately, Sunday, 01 May 2016 was a much more relaxed affair, with us managing to have a lie in as our concerts (only 2 of them this time) didn’t start until the afternoon / early evening. As the weather wasn’t too good and I didn’t really want to eat outside as I was cold, we went to Ask Italian again for an evening meal which was much lighter, more relaxed and altogether more enjoyable than the previous evening. And that’s where it ends … Our Cheltenham Jazz Festival was over for 2016 and now we just had to wait until early June, when we had lots and lots of tickets for the Cheltenham Science Festival. Hopefully, our rather over heavy schedule on the Saturday will allow us to plan things a little more successfully – although looking at the calendar, every day seems to be a ‘heavy schedule’ at the Science Festival, so much so that on occasion I have no idea when we are going to make time to eat!

Tim Berne

Tim Berne

“Nimble Kickstarter Competition” – Combined personal, technical & professional interest

Now, there’s a first – I never thought I’d compose a blog post which combined both my personal and professional interests in one!

I have to introduce you to a neat concept called a “Nimble”, which was first introduced to me via another blog written by stumbling in flats. I was interested enough follow the link included in that post and I’m really glad I did – see https://www.kickstarter.com/projects/version22design/nimble-the-1-finger-wonder-tool. The design looked interesting and particularly useful for me, because of my inability to consistently manage to open almost any package including presents and letters etc. due to occasional tremor in my hands, which can be most frustrating! Furthermore, the site piqued my professional interest in new designs/gadgets etc. and the potential benefits of Intellectual Property protection. So there you have it, the relevance of the title to this post. Look at the website, it’s fascinating!

To anyone that has seen my recent posts, this has also given me the ideal opportunity to demonstrate my innate desire to procrastinate and not write the “to be continued” element of our recent house hunting escapades. There is also another reason for this, because it’s looking very likely that we will soon be able to move house and we have been very busy organising lots of things, but I don’t want to ‘jump the gun’ and write said post until things are a little more sorted/finalised.

Medical appointments: one after another… and still the blasted foot swells and hurts!

OK, now this is going to be a very short post because I seem to have done lots of boring medical things in a short space of time – AND then I went to the Cheltenham Literature Festival (next post) and then on holiday in Brittany to celebrate my mother’s 75th birthday (post after next post), which are much more interesting tales!

  • 24 September – GP appointment (at 7.10 p.m.) about the blasted foot
  • 25 September – x-ray appointment at the local hospital to x-ray the blasted foot
  • 28 September – continence nurse appointment at a local clinic I’ve never visited before
  • 29 September – ophthalmology appointment at the local hospital about my wandering left eye
  • 02 October –  last physiotherapy appointment with Stacey, who is moving on to pastures new (closer to her home).
  • Next physiotherapy appointment (21 October) with new lady called Emma

… and now you have to wait (just like me) for the couple of fun bits mentioned above … and maybe after that, I’ll continue to try and sort out all the stupid medical issues.

So much going on and so little time (impetus) to write about it!

OK, I know – when you’re doing lots of stuff you should be constantly blogging about it, right? WRONG! I’ve never been very good at keeping a diary and here’s why. When things are happening (good or bad), I get so engrossed in them I don’t have time (can’t be bothered) to write about them. So now you’re going to get a flurry of blog posts about what’s been going on over the last few weeks, in chronological order and each separate, so that I can add some photos etc.

(Note: I’m not sufficiently adept with this system to cover them all in one post – please bear with me! – OK, I think I’ve figured it out, but I’m still going to do separate posts to help with later identification – I love to ‘organise’ things in lots of separate boxes / folders etc.)

And the generic photo for this post? (I’ll explain later, when I want to post something, but have nothing to write about!)

Midweek Socialites logo

EYES TO TOES – MOANS TO PROGRESS?

For the last couple of months I’ve been noticing problems with my eyesight. Not that it’s getting worse as such, except when I’m trying to look at things with both eyes. It’s not that my prescription has changed, it’s just that when I’m tired or the light is beginning to fade, I notice that it’s harder to read things such as number plates and/or road signs from a distance. If I close one eye, my vision from the other (with glasses) is fine, but with both eyes open my vision is definitely worse – my eyes just don’t seem to want to work together. Back at the beginning of July, I made an appointment with my usual optician to see if he could notice anything or whether I was just imagining it! After a very thorough examination of both my eyes, individually and together, he made the surprising announcement that my left eye was just not working with my right eye. Cover the right eye and hey presto, the left will pull itself together and gets into focus! After I got home I looked in the mirror and sure enough, whilst my right eye was looking straight ahead, my left eye had just drifted off into the corner. The optician was able to correct this using what he described as prisms, but he concluded that he needed to write to my GP and ask him to refer me to the ophthalmology department at the hospital for a check-up. Within a few days, my GP sent me a letter authorising me to book a suitable appointment at any one of a number of listed hospitals – so far so good! Then the fun began: Now I’m usually quite confident using IT systems and in this case my GP’s letter said that I could book my eye appointment via the Internet, which I did over the weekend. The IT booking system was not perfect (they never are), but I did eventually manage to book myself an afternoon appointment at the beginning of September – the earliest available. At the beginning of this week I received two letters, the first cancelling my preferred appointment and the second providing a new appointment at the end of September, in the morning. After speaking to the contact provided in the second appointment letter, it was apparent that the investigations needed to be carried out at my local hospital (so much for the initial choice) and the only appointments they had where 9.30am or 10.00am at the end of September or wait until mid-October. Of course, I took the first appointment available because now I know there is something worth investigating and I’m not going mad, this piratical look that I have had to adopt on occasion is becoming infuriating!

Fortunately (?), my mind has been a little distracted lately by yet another/different problem.  For the last few weeks I have been getting a stabbing pain in the top of my left foot and this can occur both when I’m standing up and when I’m lying down. I’ve been trying to use multiple layers of tubigrip, but this hasn’t really been helping and so I finally rang my MS nurse and tried to explain the problem as best I could (now feeling that I really  had gone mad). Much to my surprise the nurse managed to speak to my neurologist, who confirmed that this may be a symptom of MS and simply required a steroid injection into my foot. His secretary will send me  an appointment at his clinic next week!!

Hooray,  so now I should be able to go away on holiday at the end of August with foot sorted, but wonky eyes!  Hopefully, one thing sorted at least and I will enjoy my holiday.