When a week becomes interesting.

Sometimes you know in advance your week is going to be really busy.  The week before last, and last week, were exactly like that.  Whoops, it has taken me too long to write this.  Really three weeks and two weeks ago now.  Sorry.

On the first Monday we had an appointment with the Driver Assessment Centre in Edinburgh.  That is quite a drive from where we are but there were compensations.  We set off at 9am for the 1:30pm appointment to allow time to stop at The House of Bruar for a snack.  We weren’t interested in the luxury stuff you can get there, although I am obsessed with the food hall despite all the stuff I am unable to eat now.

What we wanted was the restaurant and our careful timing enabled us to arrive while breakfast was being served.  My husband had egg and sausages in a roll.  I had a yogurt.  It was a lovely high calorie yogurt but I do miss the things I could have eaten a few months ago.  I would have gone for the continental breakfast which looked lovely, and my favourite thing, you helped yourself.  Not to be now but it was still a yummy yogurt.

Fortified by our snack we carried on to Edinburgh.  Now these things take a bit of planning so we arrived with water that could go through my PEG and a 400 calorie drink that could too.  No week is complete without forward planning and we had done well.  So, off we trotted into the Driver Assessment Centre.  I was totally gripped.

We had read about it in advance so knew that would be a variety of tests then, potentially, the chance to drive round Edinburgh in a car they thought would suit you.  Definitely not your own car.  No wonder I was fascinated.  I started with reading numberplates.  Easy peasy.  Then came various mental and concentration tests.  I enjoyed those too.  Well, one comparison was tricky but the rest were lovely.

It got more fun when I had passed those tests.  Next came reaction tests in a mock up of an alfa romeo automatic.  I had to get the hang of one foot for braking and accelerating as I had never driven an automatic.  The lady testing me congratulated me on getting every test right and within the time too.  Yippee.  I could be let loose in a car.  First it was a manual car but then I changed to an automatic.  It is quite weird driving a car you are not used to.  I wasn’t great in the manual and I had a little mishap in the automatic when I used my left foot to brake.  Whoops, it was lucky we were still in the hospital grounds as we came to a very abrupt halt.

It turns out you have to drive for an hour to satisfy the DVLA.  That was 14 miles round Edinburgh and I am really a country girl.  So much traffic and so many lanes! Not what I am used to. Are you agog to know what I was told? I thought I might be told no more driving.  But that wasn’t it.  I was told not to drive a manual car.  But I can drive an automatic.  Half a win really.  I do need a couple of lessons too.  Then we trailed home.  We stopped on the way for me to enjoy a yummy white pudding in Aviemore.  That link is quite illuminating – and mine, of course, came in batter from a chippy.  I always love them.

On the Tuesday we were off to Aberdeen.  But first I fainted.  I felt dizzy at breakfast so foolishly got down and tried to make the sofa.  Now I can’t talk.  My husband hovered behind me querying what was wrong.  He guessed a variety of wrong things but then he guessed I was dizzy.  I nodded at that, and then keeled over face first into the floor.  The first thing I knew was when I found myself lying on the carpet.  Not an expected aspect of my week.  I acquired a carpet burn on my nose and some interesting bruises on my cheek and nose.  Oh, and round my eye.  I obviously looked gorgeous modelling my bruises.  Nevertheless we headed off to the MND clinic in Aberdeen.

They were great.  Although shocked by my bruises.  People fall with MND but I had fainted for variety.  Oddly, I don’t yet fall over.  You can imagine how fetching I looked.  They were very helpful too with suggestions to help my problems.  But bemused by my fainting.

The rest of my week was much more lovely, seeing friends, exercising a bit, and happily eating more.  But last week was really exciting.

We jetted off from Inverness to Gatwick.  OK, hardly impressive travel.  But wait till you find out why we were doing it.  We saw my daughter graduate.  And had a gorgeous time staying with my aunt and uncle for two nights.  Our daughter looked beautiful and it was such a treat to see her graduate.  We also saw an amazing man get an honorary fellowship.  Look at this link.  He had a robe and so did his two assistance dogs.  He was seriously inspiring.

It was such a lovely week.  I had the graduation on my wish list and made it.  Yippee.

Last week has been wonderful too.  We saw a helpful doctor about my drool.  You really don’t want more details than that but I am trying to sort it.  Kitchen tissue stuffed in  my mouth is not a great look.  Efficient though.

The best thing about the week was seeing family.  I saw both brothers, my mother, and one brother’s family.  Yippee.  Apart from my mother, who quizzes me about how I am, everyone else knows my favourite thing is to be chatted to normally.  Yes, sometimes I end up behind the conversation as I can’t type quickly enough with my app.  But I love normal chat.  I love hearing about everything.  Who cares if I have to delete words of wisdom sometimes?  I don’t.  Predictable is a great app all the same.  I adored seeing family.

I had a wonderful Friday too.  As a condition of the driver assessment I was committed to lessons in an automatic car.  The first was on Friday.  Excitingly I got away with a single lesson.  I am safe in an automatic car.  Hurrah.  The driver assessment centre need to give the go ahead when they get the form from the driver instructor and then I can drive again.  Just wonderful.

Now I have got back to exercising too.  When I get up I roll back and forth, rock, and crawl.  For further information on what on earth I mean, please see this post.  I also use my shoulder pulley.  I love it as I can’t actually raise my arms that high normally.  If you look carefully you can see I haven’t totally lost the bruise under my eye from when I fainted.  But my nose is now fine.


I use my exercise bike in the morning still, and my lovely new trampoline later in the day.  Today I am trying out arm exercises too.  My legs are much stronger than my arms and I realised it was time to do more for my arms while I can.  I can’t report on the new exercises yet, so you get to see me on my trampoline instead.  This is me keenly moving one leg then the other without lifting my toes!


Sadly it refused to let me trim the photo this time so you get to see unnecessary bits and pieces too.  I am sure exercise helps but all I can say at the moment is it makes me feel much better to be using muscles I still have.

I must finish by introducing you to a funny little 60s song.  At the time I was totally unaware of it, and quality of the video isn’t great but it did make me laugh.  And you probably haven’t heard it before.  So, let me introduce Little Arrows to brighten your week.

Let me also say – embrace your week whatever it brings.  Even my fainting made me laugh.  I really looked quite odd in a battered and bruised way.




Cliff or Plateau

I have been thinking about MND a lot lately.  People had always mentioned cliffs to me.  You are drifting along happily with not much changing and suddenly, whoops, a big change and you feel as if you have fallen off a cliff.


It doesn’t matter which form you have, it just happens.  I heard a short poem by an incredible man called Mark Stone on Radio 2 when we thought this was what I had but weren’t yet sure.  He started with limbs but it really describes what it is like:


snip, you can’t keep up with your family in the street;
snip, you can’t control your foot against the rip at the beach;
snip, you can’t drive;
snip, you can’t do the stairs without using the banisters;
snip, you’re no longer safe in the shower;
snip, you need crutches outside;
snip, you can no longer visit your parents’ house;
snip, you can’t get to your kids’ rooms;
snip, you’re breathless every time you walk;
snip, you need a wheelchair;
snip, you can’t get into a normal car;
snip, you can’t get into your own house;
snip, snip, snip…
If you want to know a bit more about Mark, who sadly died earlier this year, do read this.
You do get plateaus too.  Hurrah.  For ages I knew my voice was deteriorating but nothing much else was changing.  Of course my voice has gone totally now but armed with my Predictable app I can still communicate.  I wrote about the app here so don’t need to bore you again.  The only thing I would change about is the fact that if you type the wrong letters it doesn’t realise.  Fantastic if you get the first couple right though.  I quite often get a row of Ls as I try and delete letters but get the L key instead!
So what sort of cliffs have I fallen off?  The big one was obviously losing my voice but it isn’t as if it was a surprise.  It took the best part of a year to vanish totally. Maybe not a cliff at all then.  My greatest sadness, and therefore a cliff to me, was when I suddenly realised I could no longer eat my beloved pork pies.  The horror.  One day I could and the next day I could only manage the pastry.  Oh, woe is me.  Now, I couldn’t even manage the pastry but it is amazing how you adapt as you go.  I am getting the hang of eating high fat snacks again.  So, is this another cliff I have tumbled off?
I normally gleefully drift through life in a happy haze of contentment.  Even MND didn’t deter me.  There is still so much to enjoy.  Three weeks ago I went into hospital to have a PEG fitted.  This is just a feeding tube ready for when I can’t swallow.  I can eat but the fact I can use it for water is very exciting.  Sadly I picked up an infection so the following Friday I was back in hospital.  Two weekends in a row in hospital.  Ho hum.  Just till the Monday this time though.  I came out with interestingly swollen calves and feet.  I had to walk out of hospital in rather attractive fluffy slippers.  I hadn’t a hope of fitting shoes on.  I am not sure you can really tell but these were my feet a couple of days later.  They seemed to have lost their shape!
 Two days ago I got my shoes on again.  Yippee.
Truth be told all of that knocked me for six.  I have lost weight (not good) and weakened quite a bit.  Another cliff?  Maybe not as i can still do everything.  It is just slower.  Much slower.  I sort of miss my pre operation self and the things I could do then.  It is nearly a month since I got my PEG and then I got my infection too.  Is this another cliff?  It is to0 early to say.  The biggest thing that has become apparent recently is that long car journeys take far more planning than we had anticipated.  We happily set off for York assuming I would always find something to eat.  Not true.  The biggest problem was breakfast.  I ended up with a yogurt as that was the only thing I could eat.  Not good when you are meant to be cramming in calories  It isn’t really a cliff as although I can’t eat a lot now there are some lovely high calorie snacks I can do.  Hurrah.  And some things the dietician is astonished I can manage.  Like crackers and most crisps.  Not healthy but very yummy indeed, and a lovely crunchy change from all the smooth stuff I eat.  Crispy bacon too.  There is a lot to enjoy.
So what can’t I do?  I could do it before my operation but I struggle to get up from the floor now.  I can do it but it involves the stairs if I am downstairs and I can use a chair upstairs.  It takes ingenuity but imagine giving up.  It is all to easy to accept your muscles weakening and just move to the next stage.  I know I could do that.  It is obvious that at some point I really won’t be able to get up from the floor at all but it isn’t yet.
I am a huge admirer of Dagmar Munn.  I have mentioned her before but do look at her blog here.
She really is worth reading about.  It is a really sensible blog.  So I do still exercise.  Not anything like someone healthy but enough for me.  Exercise bike, a bit of rocking on the floor and even a shoulder pulley on a door.  I love giving it a try and seeing what I can manage.  A regular question is whether I need a stick to walk.  Not yet.  I may be slow (I slightly crave the trampoline Dagmar Munn mentions in case it helps!) but I don’t need an aid to walk yet.  I will but surely the best thing for everyone is to enjoy the things you can do.  Please enjoy your life.
Oooh, a song to finish I think.  I may have used this before but this is Try by Dolly Parton.  I love the idea of trying to be an inspiration.  I will never make it to the top of a mountain now but that doesn’t mean others can’t try.  Who cares about a cliff when I am here.  Embrace your life please.

Exercise Memories

A few days ago the sole fell off one of my trainers.  There I was at an outdoor exercise class a friend and I have started attending.  Twice a week there we are, in a field, with a personal trainer.  I did a very slow, gentle jog to the fence, started doing toe taps, and suddenly there was my sole lying on the grass beside me and no longer clinging to the rest of my shoe.  It looked surprised.

I did briefly wonder what to do next.  Lucy and the personal trainer arrived to look, the latter proclaiming that he had never seen such a thing before.  I pointed out that my trainers were over 25 years old so it possibly wasn’t a surprise that they had given up the ghost.  Fortunately it turned out that I could rip the sole off the other trainer so I could remain balanced, albeit with no grips on my shoes.  It does all illustrate two points about me though.

I really don’t enjoy shopping so hadn’t contemplated the purchase of new trainers at any point in the past 25 years.  And, I very seldom do anything that necessitates donning trainers.  This is a humiliating admission.  But also why I started the outdoor exercise class.  Although as further confirmation of my unfamiliarity with exercise classes, I have to borrow a T-shirt from my daughter in order to take part.

Today I sadly faced the inevitable and went to buy new trainers.  Astonishingly it was almost pain free and I am now prepared for my next exercise class with new shoes complete with decent grips for exercising on grass.  And they were in the sale.

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This did all make me think about my woeful exercise history.

The one good bit is that I walk.  A lot.  In fact, I may not have had decent trainers but I have three pairs of walking boots and one pair of walking shoes.  That probably is excessive.  My excuse for the recently acquired third pair of boots is that they were cast offs from one of my children who outgrew them long ago.  But they do fit me, so I couldn’t resist them.

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Walking may be good but I do need to go uphill more frequently than I currently achieve.  Especially as there are currently plans afoot for several family members to bag a Munro or two next Summer and I am the second youngest of those planning to try but definitely the least fit.  Living in Norfolk has not been good training for mountains and I shudder to remember how pathetically inadequate I was last time we attempted something similar.  It could be time to start training.

Walking may be good but I also have to reveal the sorry tale of the rest of my exercise history.  Even at school I was no athlete.  I was an active child but inept at every sport I tried.  Tennis, hockey, lacrosse, gymnastics and athletics, I tried them all and was hopeless at all of them.  I did have an amazing propensity for acquiring injuries though.

I was still at school when I first tore a ligament in my left knee.  I managed to repeat the feat at University.  It left me with an interesting, but pretty repulsive, ability to click my knee cap in and out of place.  More unfortunately, but luckily rarely, my knee would give way with no warning.  I had a lot of physiotherapy and eventually an operation.  My knee has been a lot more stable since but I was also told something that came as music to my ears.  I was told I would need the operation again in the future.  That, obviously, wasn’t the glorious information imparted.  The wonderful bit came when I was told to avoid high impact exercise in future.  Fantastic!  Not only did I not enjoy running, I need never do it again.

Let me pull out some exercise memories for you.  After all, I was the girl who once got a P.E report saying ‘Susan has mastered the art of looking as if she is doing something when in fact she is doing nothing at all’.  Oh dear.  Blatantly untrue too, which is a shame as I worked hard to try and keep looking as if I had just finished an impressive somersault or vault.  Please be forewarned that the tales I am about to reveal are no more glorious.

There was the time I played hockey at school and someone swung back their stick and tried to whack the ball impressively into the distance.  They missed the ball and hit my ankle instead.  Apparently I toppled over in a convincing imitation of a falling tree.  You may be generously thinking that really wasn’t my fault but I can’t help feeling I was almost certainly badly positioned in the game.

Fast forward a few years and I am at University.  Two friends and I tried an exercise class.  Twice.  As the outcome was exactly the same both times we gave up again.  We positioned ourselves at the back of the class due to our lack of awareness of what the exercises might be.  Now Heather was beautiful and particularly voluptuously endowed.  This was incredibly useful as sending Heather to collect a take away order would result in her being presented with additional free food in a way none of the rest of us were.  It was less useful in the exercise class.  On each occasion, all two of them, there came a time half way through the class when Karen would lose a contact lens and we would end up scrabbling around the floor trying to find it.  Then we would get to a stomach exercise Heather couldn’t get the hang of.  She would lie on her back giggling and quivering which set us off too.  It wasn’t a success.  Hence only trying twice.

So, the fact that I am now attending an outdoor exercise class regularly is almost miraculous.  The fact that I have replaced my trainers very definitely justifies celebration.  And this time it may not take 25 years before I replace them.  But if it does, new trainers in my 70s will definitely justify further celebration.  Walking is still more fun though.