Thursday, 29 December 2011

Where do I go from here?

One of the worst things to lose with the diminished cognition of my messy scrambled eggs is my sense of direction. I have toured in the UK for years, decades and was always good at navigation. My parents or more likely my dad taught me and my siblings how to map read. When on holiday, we would sometimes be entrusted with choosing the route to go – straightforward or picture-skew (picturesque is not a particularly English sounding word and skew is sometimes how our routes took us).
Now I know my thalamus may be shrinking - but it seems harsh that I cannot remember the simplest of what-should-be-familiar routes. Driving back from our friends’ house on Christmas Day I had to ask MyMan which way to go, repeatedly. I use my satnav more than anyone should. Or is this a case of me just being more normal now? When I bemoan my faulty memory, a friend tells me that before I was exceptional – knew too much, remembered everything (not true) – and now I am just like a normal person. If only. Or rather, I am glad ‘normal’ people do not have to endure what I go through.
Today I saw my GP. She is excellent. Great communication skills. Thorough and dependable, except she works part-time so it can be tricky getting an appointment. Today we went through my 3 point list – moving from Oxybutynin patches to pills, looking at dosage of anti-depressants, and reviewing my Gapapentin in light of a new annoying symptom (stinging soles of the feet).
She knows I have to write things down. Without making me feel awkward or stupid, she jotted down our plan of action – it was ‘ours’ not ‘hers’. The progression steps for each drug. The way forward. Except… I look at the list now and cannot see what I am supposed to be doing with my anti-depressants. I made the next appointment (three weeks’ time) whilst at the surgery as my GP suggested so I wouldn’t forget. I know we are going to review how things are going with the changes. I went to the pharmacy with the prescription and have new Oxybutynin tablets and new dosage Citalopram meds. I have the plan for the Oxybutynin. I have the suggestion for changing Gabapentin. But where are the instructions for the anti-depressants? I hope I am right in thinking I just jump from 20mg to 30mg daily.
Sometimes going on a new journey can be exciting. I quite like driving and not deciding in advance which way to turn. Making it up as you go along. At least I always used to know whether I would need to turn right or left to get near to where I wanted to be.
Nowadays, I have no idea. Everything seems to have gone skew-whiff and it's not pretty. Where do I go from here?

Tuesday, 20 December 2011

The flowers that died

Please don't judge me too harshly. A few weeks ago, a man from Interflora rang my doorbell. Would I take in this elaborate bouquet of flowers, in a vase, for my neighbour who was out? I was reluctant but agreed. I knocked on the neighbours' door. I rang the neighbours' bell. Every day for a long time. Their curtains were drawn. Shouting Cat who lives with them was nowhere to be seen or heard. Eventually the flowers withered away and died. They had to be thrown away and still no sign of the neighbours.

Then, on Sunday, a card was put through my letterbox whilst I was out. A courier had tried to deliver a package to me. I have recently bought many things online rather than brave the shops. I am often out when someone tries to deliver. It's probably an unwritten rule that you will be out when that important package arrives. Even if you have sometimes stayed in on purpose to wait for the delivery.

I don't know if it is also an unwritten rule that the package will be delivered to the neighbours for whom you have taken in a package before. Even when it is a different courier delivering. But that is what happened to my package. Then, of course, when I got home and picked up the card and got over my surprise to have missed a delivery on a Sunday, the neighbours were not in. I knocked on the neighbours' door. I rang the neighbours' bell. Frequently. I needed that package it was not like unexpected flowers. This contained presents for other people.

I had nearly given up hope of receiving the goods in time. I should not have doubted. The lovely French neighbour knocked on my door quite late last night. She carried a huge box. Yes it was what I had been waiting for.

Now I have a very bad memory. I blame the lesions on my brain. I did not tell her about the flowers that died. At first I had genuinely forgotten. Then, after she had gone, I was embarrassed and did not go back to her front door and ring her bell. She however did come back to mine. She brandished a slightly dog-eared old delivery card. Did I know anything about these flowers? I had to admit the flowers had long since died and been thrown away. She was a bit regretful but not too sad. The flowers had not even been for her. They had been missaddressed to the people who used to live in her flat. She knows where these people live now but as I told her the flowers had died it was not a problem.

Now this is the bit where I am totally in the wrong. There had been a card with the flowers. More of a note really. It said nothing of importance. But it probably had a name of who the flowers were from. Just a first name. Or two. I don't remember. The tag is gone. It went in the recycling. I put it there. I could not give my French neighbour the card that had come with the flowers that died to pass on to the neighbours who have moved.

I had taken the recycling out. It had gone. Long gone. Now there is irony here. My French neighbour does not seem to do much recycling judging by the huge number of bulging bin bags from her flat that fill our shared bin store. If she had come round sooner I would still have the card even though the flowers had died. I only took the card recycling to the huge wheelie bins on our estate yesterday.

By the way, the sharp eyed amongst you may have noticed I said the flowers were in a vase. I still have the vase. Please don't judge me too harshly. It's just a glass vase.

Saturday, 26 November 2011

Return of the Waterproof Mascara

I’ve been away. Away from this blog, away from an easy pattern of sleeping in my own bed each night, away from peace. If anyone knows where my joy has gone, I would like it back please. Some things are back already. I am here. Not for long but here today. So is the waterproof mascara.

As comebacks go, it has not been eagerly awaited. There has not been the joy of anticipation reserved for birthdays and other celebrations. Tears roll down my face with the unpredictability of an erratic bus service and woe betide anyone who asks me how I am. Fragile is my common answer. Accompanied by unexpected water falling from my eyes. I don’t wear much make-up on a daily basis but I hate to go out without mascara. Recently I have made sure it is the waterproof stuff otherwise I may end up sporting the panda eye look.

Often there is no ostensible cause for the tears. Sometimes they are justified. The other day I was staying in a horrible hotel. It was more like a hostel and I was miserable. I cried.

I got over it. MyMan cheered me up on the phone. I had a job to do the next day so I pulled myself together and did the best I could. The best was pretty damn good. I was exhausted by the end of the day and unbelievably happy to back in my own bed. I have had three consecutive nights at home. I have been able to bag up some things to take to the charity shop. Getting rid of things I don’t use/want/need is always good. I wish it was that easy to get rid of the MS, get rid of the tears.

Today I am fine. I will still wear waterproof mascara though. I never know what may happen to trigger the MS mood changes that blight me. Now, excuse me whilst I go and put on some waterproof mascara before going out to face the world. I will be back.

Saturday, 12 November 2011

That way madness lies

My mother was a psychiatrist. I remember one ward in her hospital where I felt if you weren’t mad before you stayed, you would be by the time you were supposed to leave. There was always someone crying or shouting. The doors were locked (I think), handles turned the wrong way round.

I sometimes worked in Occupational Therapy there. I remember, during a cookery session, asking a patient who was stirring a bowl of yumminess “What are you making?” “Oh, I’m not doing any cooking today.” Her reply was accompanied by an uncertain smile and bewildered eyes. She kept stirring with the wooden spoon and later produced some excellent biscuits.  

Recently, I received a letter from my GP surgery: “Having a long-term health condition or chronic illness, such as diabetes, pain, or a heart or lung condition, to name just a few, can really impact upon your life…” – no kidding! It offered me “a FREE programme, choosing Self Management for Life, that can help you understand how your condition impacts on your life, your job or even your relationships with family, and how managing these effects can help you take more control of your life and your health… excellent opportunity… runs over seven weekly session, with each session lasting three hours…”

I won’t be taking up the offer. I fear that way madness lies and I’m not afraid often.

I went through a stress management Mindfulness Wellbeing course at a time when I felt no stress but was very sad about my DX. And I was probably still grieving for my father who had died the year before. I felt braver doing that course than jumping out of an airplane (which I also did!). Mindfulness practice seemed to lead to me being more distracted than normal. Everything was thrown off kilter by having to attend the sessions when I was still only just adjusting to a regular routine of taking meds.

At the same time I was having counselling. I would be asked if the Mindfulness course helped. I couldn’t be sure one way or another. I found it very hard to be told I was depressed. It was even harder to admit it to myself. Positively depressing in fact. Or should that be negatively depressing.

Not long after DX, a consultant put forward the possibility that I had the capacity for clinical depression. This was totally alien to me and my BFF who was with me at the time. We rejected the potential as I was ‘normally’ such a positive person. Of course, ‘normal’ no longer existed.

Later, when the idea of being depressed was suggested by my MS specialist nurse, I accepted it.

At the time, I hated being dictated to by routine – meds, injections (I was still on Rebif), the stress reduction clinic, counselling sessions – I didn’t recognise the person with a regular pattern to her days/weeks. I am glad I had admitted to my GP that I wasn’t coping. That I needed help. Needed anti-depressants.

The latter work though I do think it’s strange that, with serotonin levels raised by the anti-depressants, it became harder to write. Perhaps some writers are miserable because they write better when depressed. Is writing therapy for or a symptom of depression? Oh, that way madness lies.

P.S. I googled 'That way madness lies' to check the quote source. For some not-entirely-KingLear viewing, you can watch this: Slings and Arrows - Season 3, Episode 3: That Way Madness Lies

Sunday, 6 November 2011

This is my plan

I don’t do plans. Not really. Just over seven months ago I started this blog. I didn’t have a plan for it. I had been jotting things down as they came to me in a notebook given to me by a fabulous friend.

I’ve been looking back on stuff a bit lately. Dangerous I know when you’re supposed to be living in the moment. One of my earliest scribblings was “where did it all start?”

I wrote it was there at the birth. Not fully there, more of an idea, a possibility. Like a pen which still has ink in it but hesitates mid-flow because it is held at the wrong angle.

I was a home birth. The third child so I expect my mother felt she knew what she was doing by then. Every child is born with possibilities. I expect all parents have hopes for their child. Pre-birth ideas of what they might be – boy, girl, tall, short, scientist, athlete.

As we grow up the possibilities change. Whether through nature or nurture, we are shaped and formed. Ever growing, Becoming whoever we are but not in a finite way.

There are always the multiple possibilities. Like the many different symptoms caused by the myelin scars in multiple sclerosis.

I doubt if any parent would have the idea their child might be an MSer. I am glad my parents didn’t live long enough to find out I am. I wouldn’t want them to share this journey. I want to be less serious. I am failing. I want to recapture my positivity. I think I had it but it was a fleeting butterfly which, if you touch it, will leave powder on your fingers. Every so often I net it and marvel at the beautiful colours.

For the most part I get by. I have not slipped back to the bad times I see mapped in my ‘really rather naughty’ notebook. I may quote from my rock bottom pages in the future but right now my plan is to jot down quirky thoughts if they come to me. To blog when I can. To live each day.

Friday, 21 October 2011

The C word

I don’t mind swearing. Some wonderful recent films have been loaded with fabulous swear words. If you haven’t seen ‘In the Loop’ or ‘In Bruges’ I strongly recommend both. Of course, you should avoid them if you have a problem with ‘bad’ language.

‘In Bruges’ is a particular favourite. Having already watched it at the cinema, I saw it on dvd when I was in hospital in 2009. My brother had lent me his portable dvd player. There was not a lot to do on neurology having just been diagnosed. Every so often doctors of all different levels would come to practise on me. Supposedly I was a particularly interesting case. I had just finished watching the film when one doctor came to ask me some cognition testing questions. You know the sort of thing.

What’s your name? What do an orange and an apple have in common? What’s the difference between a dwarf and a child? Hmmm, if you have seen ‘In Bruges’ you will understand how this last one led me into a rambling explanation as to why that is such an interesting question. It culminated in me recognising that the doctor probably didn’t want to hear about hit men in Belgium. My cognition was good enough to be able to give a more straightforward answer to do with people of restricted growth and young human beings.

I recently watched it again. MyMan hadn't seen it and I so wanted him to like it. Thankfully, he did. The film ends with mention of one word I definitely try not to use. Can you spot it here: 'In Bruges' last lines. It is still more than two months away but already it’s hard to avoid Christmas. Whoops! I used the C word.

In shops there are Christmas lights, Christmas cards, Christmas puddings. On TV there are Christmas ads. In households there are Christmas debates. The ones about who is going where and when. I have been spared most of these in recent years. Now I am laying low whilst MyMan debates and fumes about where his children will be on which day this Christmas and New Year. I will go along with whatever is agreed with his ex. I am avoiding use of a different C word.

Wednesday, 12 October 2011

Living in the present

I’m not a great one for posting inspirational/wise thoughts on Facebook but this picture was shared by a friend. It caught my eye and made me think:
I don’t want to die having never really lived. I am determined to enjoy my life no matter what it throws at me. I sometimes do things other people might think are a bit mad. I have been up in a hot air balloon, jumped out of an airplane in a fundraising tandem skydive, had a trial gliding lesson, been on a segway.

Apart from the hot air balloon ride, which was a birthday present from my BFF, all these have happened since DX. Sometimes it seems that MS has been a life sentence but also a gift. 

I think my next madness may be abseiling down the side of the hospital to raise money for the neurology department. I would never even consider doing that if it hadn’t been for this gift. That is living in the present.

Thursday, 6 October 2011

Patterns in the sand

I have regular pattern in my life where there was none before. Meds at 8am, 2pm and 8pm. And irregular pattern but pattern nonetheless. Hospital visits with their accompanying blood tests. Drink lots of water, warm up your arms, chat to the nurse to distract your veins so they don’t notice the needle coming to suck out the blood. A week later I still sport a large dark bruise on one arm from the first, failed, attempt to get blood out of me during a clinic visit.

I recently got the results of that test. Pacmans have dropped again. Bugger. I will need to be retested towards the end of the month. Four weeks after this last test. This is a pattern I could well do without.

Not long after I was first diagnosed, I wanted a picture of my brain. The MRI would have allowed me to see the pattern of my lesions. I could have developed a performance piece. Dancers would have skirted round fixed white points. Nerve impulses zooming round my body, their progress stilted and confused by the myelin scarring. I don’t know the patterns. The sands seem to shift with the slightest breeze.
I used to be fine with the vagaries of my life. Never knowing what the next job would be. Where I would have to go. Recently it has been harder to deal with the irregularity. There have been late changes to jobs that were booked but now disappear in the gust of funding scarcity. Whilst there has always been unpredictability, it used to be relatively rare for a job, once booked, to disappear completely.

The patterns in the sand may shift but surely there should always be the same amount of sand there? Added to perhaps but not taken away. Whilst pondering this complication in my not-so-simple life, I remembered the beauty of sand art. At this time of year, when the shofar is sounded in the synagogue, the music in this piece is particularly apt – enjoy:

Monday, 3 October 2011

These 'phew' days

It’s been hot recently. It’s October so we didn’t really expect it. Yes, there were weather forecasts for an Indian summer but, honestly, who totally trusts the weather forecasters? I can see how it is by looking out of the window. Predicting how it will be is a different matter and they sometimes get it wrong.

Phew! It’s been hot. Hot and sunny. Occasionally hot and humid. Here ends the weather forecast or whatever the opposite of forecast is because they do like telling us how it was as well as predicting how it will be.

I don’t think I have detrimental MS effects due to heat. I may not think so or rather remember so but in fact I do. I get tired. I dehydrate quicker which has very bad effects on me. The trouble is I love being out in sunshine.
The excellent Multiple Sclerosis Resource Centre put this on Twitter recently: @MSRC Heat Intolerance Page You may find this page of use over these 'phew' days.

I may be easily pleased but I liked the use of ‘phew’. I hope there will be more days of sunshine. After just a few my spirits feel lifted. Perhaps next year I’ll even get the chance to wear a bikini. No, maybe not. I’d need severe body shape changing first.

Tuesday, 27 September 2011

I cain't say No

Of course, I can say 'No' - see, I just said it. But I do seem to find it really hard to say no to many things. That dollop of ice cream. That glass of wine. That acting job on a date in a week with lots of other days already booked. That night with MyMan.

Those last two might be the worst. Fortunately MyMan is good at remembering I am not supposed to overdo things and puts his sensible head on so we don't see each other every day that we could. It would mean me driving extra distances, spending time with him when I could be resting alone. Fatigue is a real pain in the arse. So we skype or phone instead. But the acting jobs... oh, he has no control over those.

Today I accepted a job on a date I already had booked to do office cover at a firm of solicitors where I sometimes work. I would much rather not do the office job so it's good I could cancel it to have this roleplay instead. But, and it's a big But, the new job will involve driving 80 miles or so there and back, possibly staying over the night before, and this is in a week when I am already booked for three other days of roleplay jobs. None of them near to where I live.

This week I'm not working anywhere except at home. Next week the madness begins again. Multiple different roleplays and rehearsals for a piece I'll be performing in mid-October. Oh and that piece is performing on the Sunday of that week when I am now doing four days of wide flung roleplay jobs. I surely am that girl who just cain't say no.

And this one is just because Hugh Jackman can really sing! Oklahoma!

Tuesday, 20 September 2011

The times they are a-changin’

I was driving back from a job recently. Going to MyMan’s house not my own home and the not-uncommon thought popped into my head that I am not the same now as I used to be.

My life’s changed, but then of course it has, it changes every day as does everybody’s. But now, I don’t know. Now I’ve got a man in my life. I have a commitment to him, to his family, his children. It’s changed. I like the change and yet part of me thinks… ooh that’s different… Did I want this? Did I seek it? Well, no but I’ve got it.

And moving on from that thought came this tune - The times they are a-changin'

It’s a protest song and sometimes I want to protest against my internal changes.

On Twitter @JSCarroll quoted Lewis Carroll: “It’s no use going back to yesterday, because I was a different person then.”

I don’t want to go back to yesterday. I don’t even want to go back to before I knew I have MS let alone before I actually developed it.

However, I hate some of the changes. The uncertainties. Never knowing what symptoms the condition may throw at me.

I am used to uncertainty. It comes with the territory when you are an actor – never knowing what the next job will be, when it will come, where you will go. And now I have some uncertainties being in a new relationship. I don’t yet know MyMan’s world. I trust him and it but there are still many changes to take on board.

I am hugely lucky to have the life I have. I have friends, I have family, I have MyMan, I have MS. These are not incompatible. There are changes and we change to accommodate our changes.

I used to say to acting students “it’s not enough to want to be an actor. You have to need it. If you can see yourself being happy doing anything else, do that. This is not an easy option.” I chose it. I didn’t choose MS. I am trying to change to accommodate my different priorities. It’s not always easy but then who wants an easy life?

Saturday, 10 September 2011

Under Pressure

I don't do things by half. It may be stubbornness or perversity but I tend to fight through beyond reasonableness. So yesterday when fatigue hit me with the force of a ten tonne truck I carried on driving. Fortunately it wasn't a real ten tonne truck. And I didn't have much choice. I was in the outside lane on a heavily congested bit of dual carriageway in London.

I do have a history of ignoring symptoms and getting on with things. For years prior to DX, I probably ignored fatigue, lapses in memory, bowel and bladder symptoms. Now I try not to. If something pops into my head, I know I have to act on it straight away otherwise it is lost. I telephone someone as soon as I think of them. Sometimes I make phone calls to myself to leave a message on my own answermachine. As for the bowel and bladder, if I need to go I need to go then!

Similarly, if I'm going to do something I'll go for it wholeheartedly. No holding back here. I might do things at the last minute but then the pressure of getting it done just spurs me on more.

It may not be sensible to cram in everything I do and I probably should be packing a bag right now instead of writing this. I didn't really need to remake my bed this morning. I could have waited before producing the newsletter for my agency. I still  have to learn the brief for next week's job and drive 200 miles... I expect a forthcoming Fatigue Course will show me the error of my ways. Certainly for the last few and next week, I am chock-a-block - work, medical and personal stuff. I will plough on through though, That's the way I am and this is how it is. Under Pressure.

Saturday, 27 August 2011

“Reasons why the north will always be better than the south....”

I don’t drink beer but I do buy pints for friends and by ’eck it was cheap up north. As you can see from this photo MyMan posted on Facebook with the caption: “Reasons why the north will always be better than the south....”

We had a wonderful few days and the best news came on Thursday via a text from my MS nurse: 'Morning. Yr pacmans have returned. Hooray! 0.7. Text me when u can come + see us for ecg attachment.'

I was wired yesterday and now am detached and hoping the red splodges will have faded before tonight’s posh frock wearing for a friend’s 40th birthday party.

I’m back on Gilenya. I have wonderful MyMan who literally went the extra mile for me on our Yorkshire break. As he would say: ‘all is good’. And he’s a Yorkshire man.

This is my reason why the north is better than the south

Friday, 19 August 2011

This is how it is but that was how it was

I’m going to Huddersfield, West Yorkshire tomorrow. It’s a bit like going home. I lived in this bastion of Luddites’ uprising for many years. It features the location of the first home I ever owned. A wonderful stone built, end terrace house appropriately enough opposite a mill where they spun yarns – a bit like me. Though mine are less good at knitting into cardigans.

A great friend of mine still lives there. Not in my old house but in one of her own, a back-to-back in what some might think of as a slightly posher area of town. She doesn’t have a genuine Irish pub down the end of her street. Nor a mosque at the other end.

Many years ago we went away together on one of my very few holidays abroad. I was reminded today that I had promised to email my photos of it to her although I have already given her a little booklet with them all in. I had scanned the prints for an online site so I could create that booklet. They weren’t taken on a digital camera – it was that long ago.

I love old photos. They remind me of how things used to be. How I and my friends and family used to look. Things we used to do. Just this morning, I emailed a bad photo I had taken on my mobile to MyMan saying: “I still want a photo of you… and of us together.”

He doesn’t like having his photo taken. I don’t particularly like it either. Of course, some photos are different. They are a professional necessity. Despite this evidence from childhood, I am not really a poser – I’m the one in the middle!
At home I have a photo frame with a picture of me and two of my best friends in. The frame says Good Times all round the edge. That’s what photos are great for – reminding us of the good times. In the dark days and in the dimness of my diminishing memory I need those reminders.

I hope I can persuade friends to take some photos over the coming few days. Then, in years to come, I’ll be able to look back at them and say “This may be how it is, but that was how it was”. Meanwhile, tomorrow night me and my Huddersfield friend will be saying “those were the days my friend”. I don’t think we’ll be singing it. Even in Corfu we weren’t that drunk.

P.S. Hopefully, on Thursday I'll get my new blood test results. Equally hopefully there will be something to celebrate and I will be having to curtail my Yorkshire holiday to come back for the ECG testing that accompanies restarting wonder drug Gilenya. Cross your fingers for me please.

Saturday, 13 August 2011

For the Longest Time

It’s that time of year again. I’m not there but I have hugely fond memories of the Edinburgh Festival Fringe. I went about six or seven times in consecutive years. Four of those years were with productions rather than just going to see other people’s shows.

When I was at university going to the Fringe was a major summer focus.
We were all-singing, all-dancing in the days before most companies were out on the streets publicising their shows. We were organised. One year I was the company administrator and I remember having to get people up after our late night binges to go out and drum up audiences. We had good audiences.

In 1985, the LA Times witnessed our routines in front of the Fringe Office. We got a big picture in their newspaper – it’s crumpled and blurred but you can still make out our striking T-shirts through the rain. 
I regret not being able to find my ZTC T-shirt now. I probably had cut off the sleeves from the start – that was the fashion then. I may have used it for painting in since. Perhaps it got splattered. I don’t know where it is. Not that I would wear it but it is a reminder of the songs we used to sing. Like For the Longest Time

We changed the lyrics to include show titles and venue names. The songs became our publicity vehicles. I still hum the tunes even if I don’t remember all the words we used.

Recently, at a friend’s 50th birthday celebrations, another friend and I started singing some of our bastardised versions of the songs. It seems like the tunes will be in our heads for the longest time. I know we performed at a venue called Celtic Lodge perhaps there was one with chapel in its name which would have lead to a version of this song: Chapel of Love

My memory of recent events may be bad but some of my memories from years gone past are the sweetest things.

(NB Nothing to do with this but I quite like the video! - Sweetest Thing)

Thursday, 11 August 2011

Five minutes early or ten minutes late

When I refer to my late mother it seems wrong. She was never late.
My mother was a stickler for punctuality. As a consequence she was usually early for things. So was my father. I think it was at my father’s funeral though it could have been hers that the congregation was gathered waiting for the coffin. Someone joked that my mother would have been appalled (and probably left) as the funeral was running late.

NB this was not an uncalled for joke. The congregation was filled with friends and family. I was chatting with them to keep spirits up even though mine were down. I like the idea that it was terribly wrong for either my mother or father to be late for their own funeral.

I have inherited their hatred of being late. Professionally, I tend to think I need to be five minutes early or I am ten minutes late. I recently read: “If you’re early you’re on time, if you’re on time you’re late, and if you’re late you’re left!” It was annoyingly written as “your” not “you’re” but, in work terms, I think the warning is good.

My BFF and her husband always used to be late for things. Recently she has been surprising me by arriving on time. Meanwhile I struggle more than I ever did to organise myself so that I am not in danger of being late.

I get terribly distracted. Despite having set a variety of alarms on my phone, e.g. ‘Get out of bed, washed, dressed’ ‘Get going now’ ‘LATE!!!’, I will delay because I am doing something. Then something else.

Yesterday MyMan arrived early. Well I thought it was early because it was sooner than I expected. However, I may have forgotten what time he was supposed to be coming. Or it might be that I had started watching a film that should have lasted my waiting time for him and then had been so often distracted I had to keep restarting the dvd. I loved that he wasn’t late. So often in the past boyfriends have disappointed me by their lack of punctuality..

Perhaps my desire not to be late is because I have little patience. Particularly as a patient. I may have blogged this before but I hate waiting. If I want something, I want it NOW! I don’t mean this in a petulant shopping way. It’s more that over the last two years I have had so many tests and often had to wait for the all important results which will determine diagnosis / treatment / progress. 

Tomorrow I will start waiting for my pacmans count results. I don’t expect them to arrive sooner than that. Blood test results are not like MyMan. They don’t usually turn up early. However, if they don’t come to me tomorrow they will be late. I hate lateness.

Tuesday, 2 August 2011

Keeping count

I’m the daughter of a mathematician. Both my brother and sister have superb mathematics A levels. My BFF is a maths specialist. What can I count on?

I can count but not rely on my pacmans. Today I got this text from my MS Specialist Nurse: Yr pacmans are improving well. But not up to restart levels. Stay of drug + can I do bloods on 9th august plse?

I had been thinking about going to Dublin to see my wonderful friend Nev next week. I hadn’t booked a flight yet but was going to look into it today, partly as a result of teasing and cajoling by MyMan on the phone last night. That’s a ‘you can’t count on me’ outcome.

I am counting down the days til the blood test. Then I’ll be counting down til the results but I can’t really count on when those will come given that I thought I would get today’s message last Friday.

The only thing we can truly count on is that we live and then we die. That’s not being morbid just a simple fact. And given that it is true, we should all make the living bit as wonderful as possible.

So I can’t book flights for Dublin but I can, as suggested by @Dr_Neil_ on Twitter, have “more rest, fine dining and afternoon trips to the cinema”.

He also pointed out the positivity of the observation my pacmans are improving which I overlooked in the annoyance that they’re not up to drug restart levels.

On 5 August Super 8 opens at the cinema (UK). Cowboys and Aliens is coming on 17th. This week I’m going to see Beginners with my BFF, admittedly not in the afternoon but it’ll still be a cinema trip. I’m considering a matinee viewing of The Tree of Life. The cinema element of my Pacmans Regeneration Campaign will be on in earnest. You can count on that.

Tuesday, 26 July 2011

Today is a gift

I have been trying not to worry about ‘what ifs’ but focus on ‘what is’. Particularly important whilst on suspension from the ‘trial drug’ Gilenya due to my neutrophils (Pacmans) being “decimated” and feeling worse than I have for a long time with the annoying return and/or increase of some of my MS symptoms. Thinking about ‘what is’ led me to hesitate at my new boyfriend’s recent question – incidentally, as a pretend grown up, I hate calling him my ‘boyfriend’ so will probably go with MyMan when referring to him in the future… Anyway, MyMan asked the other day “What do you see for us in the future?”

This was not a casual question nor was he worried I might be seeking more from the relationship than him. From the start, he has been talking about how we have many years to do things together and where we will be together in our 70s. I love this man!  I queried whether he meant the future future or just the immediate future.

Either way, his question made me think about a lovely quote I got from @lucyhunter on Twitter:
“Yesterday is history
Tomorrow is a mystery
But today… today is a gift.
That is why they call it…
the present”

Most of my recent todays have felt gift-like but have not been without their MS induced mood changes. Tears are not particularly attractive but at least I am lucky now to be with someone who seems able to take the ups and downs in his stride.

In a bad ‘what if’ downer, I partially dreaded meeting up with people I hadn’t seen for many years at an old friend’s 50th birthday celebrations this last weekend (and no, I am not 50 myself). It turned out to be a lovely occasion and my doubts were unnecessary. The ‘what is’ was so much better than my what ifs and I even told a couple of people there about my MS without any trouble.

Driving to the hospital this morning for the blood test which will prove whether or not recent resting and almost healthy eating – well, trying for three meals a day anyway – has been successful at replenishing  my pacmans, this song by The Wanted came on the radio.

And in case, like me, you are not an aficionado of The Wanted here are the Glad You Came lyrics

The lines that struck a particular chord were:
“all that counts
Is here and now”

My here and now presently is fine. I hope your today is a gift.

Thursday, 14 July 2011

30 lost blogs

What was I saying? Oh yes... no... it's gone!
So often I start a sentence and lose track of what I was saying within a few words. So much brilliance lost in the ether. Or rather in the scrambled eggs.

Sometimes I jot down thoughts which could become blog posts. Occasionally these are just titles. I don't always remember the thought process that was going to become the post connected with the title.

Here, in no particular order, is a list of some of the titles that may or may not become blog posts:
1.       I have searched all of yesterday's pockets (via @themanwhofell on Twitter)

2.       I spelt badly. Because I am a dyslexic insomniac (via @danielmaier on Twitter)

3.       Where's the Cheese?

4.       Without a Paddle

5.       So now you know

6.       Altered sensations

7.       Where to start?

8.       Is that a rhetorical question?

9.       It's not a rehearsal

10.   That's enough of that

11.   Rock bottom

12.   What a wit. What a half-wit

13.   Climbing up

14.   The truth, the whole truth and nothing but...

15.   Premeditated laziness

16.   Productive cough

17.   Suffer, endure, survive

18.   Gently insightful

19.   Are you in touch?

20.   Touch without the 't'

21.   Charge neutral

22.   A tick and a cross

23.   Where do I stand?

24.   Calling it

25.   Fuel conservation

26.   Dignity in living as well as dignity in death

27.   Fringe benefits

28.   Coming clean

29.   Out of the blue

30.   In the throes of passion

Ok, that's enough of that. If you want to read any of these posts just let me know. Now, what was I saying?

Saturday, 9 July 2011

What price well-being?

What price do you put on well-being? And what is the cost if that price is too high? The drugs I currently take, in monetary terms, cost well over the amount of my annual income. In fact just one of them costs more than my annual income. I have eight different regular meds. I don’t pay for any of them.

I am extremely grateful to have excellent access to medication. I am equally thankful I have a prescription exemption certificate. I was even glad to have the dreaded self-injection disease modifying treatment Rebif. That can’t have been cheap.

In April, I read an interesting post about the price of DMDs by Lisa Emrich on her blog Brass and Ivory: Life with MS and RA.

Yesterday, I was daunted when my MS Specialist Nurse told me the UK market price of the trial drug I have been on. 

Fingolimod, now called Gilenya, costs many thousands of pounds. It is a daily capsule and each week I am swallowing hugely more than my weekly income worth of it. The trial has ended.  I and fellow trial patients are now on an extension until NICE and the PCT decide how to prescribe Gilenya and who is eligible for it.

These will be difficult decisions and people’s health and well-being are involved.

I was devastated today to be told my blood count from yesterday’s test show my neutrophils are again severely depleted. I am suspended from the extension trial until those pesky pacmans return to ‘normal’ strength. I have another blood test in two weeks. I desperately hope my blood count allows me to resume taking Gilenya.

It is hideously expensive but the upset caused to me by being told I can’t take it cannot be priced. Without drugs like Gilenya, my well-being might be as crushed as my pacmans seem to be. You can’t buy well-being but I’m sure if the price of my meds is too high for my PCT to stand, the cost to me would be the loss of it.

Tuesday, 28 June 2011

Not making a meal of things

My brain is scrambled eggs, legs are jelly, spine is shredded wheat but put me next to the sea and I am a smorgasbord of tranquility, peace and hope.

My flatmate and I took advantage of sunshine at the weekend to drive south to Chesil Beach. There is no sand there but a huge expanse of small pebbles. It was sunny but quite windy so the sea had crashing waves at the shore. The sound was fabulous.

Walking on the shifting ground was hard work but worth it, particularly when we found a perfect cuttle fish, spider crab shell and, remarkably, the fresh leg of an edible crab.

I don't know how the cancer pagarus had lost its leg but it may have been in a predator attack. Let's face it, if you are called an edible crab, things are going to eat you.

“Hello, who are you?”
“I’m an edible crab”
munch munch munch

I think they should all be called a Cyril.

“Hello, who are you?”
“I’m a Cyril”
 That's less appetising. (Please accept my apologies if you are called Cyril.)

Wednesday, 22 June 2011

All good things come to those who wait

I am often impatient. If I want something or want to do something, I want it now. That’s not to say I can’t wait for things, I just don’t like to. I can be very patient with other people. It’s just me I give a hard time to.

Today I went to the gym. I have been terrifically busy lately. Pushing myself in work and in life generally. That kind of work/life balance is throwing my personal balance all over the place. My doctor told me it’s a shame my balance is so poor because I’m very strong. No kidding.

Today’s gym visit was unexpected. I had thought I would be at home waiting for a delivery and taking the opportunity to plough through some paperwork before a meeting with the woman from the bank this afternoon. I didn’t have to wait for the delivery - it came five minutes into the delivery slot.  So I was able to go to the Wednesday morning Neuro Group session at my Disabled Living gym. I could have stayed at home and pressed on with the admin but I hadn’t been to the gym for about a month, despite being tired, I pushed myself to go. The paperwork could wait.

I was a bit wobbly at the gym but got through most of my physio set routine and then I went into town for my meeting. I found my legs were barely willing to walk. Amongst other equipment at the gym, I use the treadmill, walking at a 50-minute mile pace for 6 minutes. I am supposed to do 5 minutes but I always push myself to do that extra minute. I don’t know why. On the street in town today I doubt I was even reaching that heady speed.

I had to force myself to stop and rest. To eat some lunch. To drink some water. To wait for enough energy to move again.

Back home, I plunged into the admin. I sorted out claim forms, updated my Spotlight CV and did a range of other bits and bobs. And now, despite being exhausted and in danger of slipping over an edge into fatigue, I can’t wait any longer. I’m writing this.

I have a new man in my life! It was unexpected. I wasn’t waiting for a man. I haven’t had a ‘boyfriend’ for many years but now I have. I met him and we fell for each other. He is utterly wonderful. I would write more but I am seeing double which is always a sign that I am overtired. All I would add is I wanted him, he wanted me and, whilst all good things may come to those who wait, sometimes when you want something you don’t have to wait at all. As a dear friend of mine would say: He is a VERY GOOD THING.

Thursday, 9 June 2011

Tempting fate

It’s June 9th. My late mother’s birthday and exactly two years since I was taken into hospital in an ambulance to be followed, about nine days later, by receiving DX.

I think it’s important to celebrate birthdays. When we do, we honour the mother who gave birth to us. Birthdays are a commemoration of their hard work and celebration of the life they gave us. As well as always doing this on my own birthday, I mentally mark my mum’s birthday each year. She died in April 2005 but today is her birthday.

My dad died on my youngest nephew’s birthday in 2008. I was there when he died. In some ways the anniversary of dad’s death has more significance to me than my mother’s. I’m not sure why.

Now I partly want to celebrate a personal anniversary. In the last two difficult years, I have had pseudoexacerbations of MS symptoms but I have not had another relapse. I’m tempting fate by saying that.

(for more info on relapses click here)

Perhaps unusually for an actor, I’m not particularly superstitious. But I do automatically display some aspects – saying ‘touch wood’ to ward off bad luck, being reluctant to talk about a job I’ve auditioned for until the outcome is known, saying ‘have a good one’ rather than ‘good luck’ to fellow actors (I rarely say the corny ‘break a leg’), sleeping with a script next to me so the lines can go into my head overnight. I don’t remember when I started doing the latter but that (along with carrying the script with me, even on a very long tour) seems to work for me.

Despite my poor memory, I do remember what happened on 9 June 2009. The shift in the pain, the phone call, the doctor telling me to dial 999, the paramedics checking it wasn’t my heart but saying I had to go to hospital, the ambulance trip, the woman in ER asking in accusing tones why I was there.

It took many tests to reach the DX. Each day I didn’t know what the next test would be. Friends would arrive to visit only for me to be whisked away for a mammogram, a CT scan, MRI. Then, after DX, there were still more tests – could I walk? could I wash myself? could I cook a mushroom omelette?!

I felt like I was at school but there were no prizes for passing a test. Mind you, I did get a lot of congratulations on the ward for completing the cooking test and they didn’t even have to eat the results.

So two years on, I am almost getting used to my RRMS. I still smile wryly at the registrar’s opinion that MS was a better condition to be diagnosed with than the other two possibilities - brain tumour or infection.

I am bemused by but grateful for friends with Primary Progressive MS saying they think it must be much worse living with the uncertainties of RRMS. It certainly is difficult not knowing how I will be day to day, hour to hour. And not knowing when I might have another relapse. Or how I will be during and after that relapse.

But I take my DMD. I strive to live healthily. I work. I sleep. I drink water. I eat (sometimes).
I have not had a relapse.

Let’s tempt fate and celebrate two years without relapse. Now, where’s a black cat when you need one?

Thursday, 2 June 2011

Blurring the Boundaries

Many people, including me, use Twitter and/or Facebook, not to mention the other social networking sites. People, especially children, are warned to be wary of disclosing too much personal information to, let alone meeting with, anyone encountered through those sites partly because you can’t be sure who they are or what they want. Anyone can have a hidden identity online or set up their own boundaries over what people can see about them and what is private.

I have responsibility for three Twitter profiles, three Facebook, one MySpace, one LinkedIn....

Four are in my own real name, one is in my agency’s name, one is easily identifiable as me despite it using a nickname, one is in the name associated with this blog, the other is just ‘other’. Confused? I sometimes am.

I do not use my real name on this blog. I have already suffered some discrimination as an MSer. I don’t think it has professionally damaged me but it was bad enough that I consulted the MS specialist at the Disability Law Service.

It is nobody’s business but mine that I have MS and I don’t have to tell anyone if I don’t want to. I don’t usually tell people in my business because it is an incredibly subjective and judgemental one. I have a flexible boundary that means I’ve told friends and loved ones about my MS and some colleagues too but, for the most part, it’s private and personal to me.

On Twitter, people sometimes make incredibly personal disclosures or have public conversations with loved ones or enemies that are very revealing. Sometimes it’s like someone picking their nose whilst driving because they think that they’re in a box of their own, oblivious to the fact that others can see right into that ‘box’. You might feel guilty witnessing a private act but it’s their fault for doing it on full show.

Picking their nose is not a euphemism but there are lots of other private acts that take place in cars despite the fact the windows are not frosted or steamed up. Well not at first. I’ve watched Titanic, I know what can happen.

At least in a car with the windows wound up you can’t hear very much from the outside. The other day a couple had a very loud conversation on my upstairs neighbours’ balcony. I was sat outside, plainly visible, in the communal area at the back of the block of flats. I could hear every word they were saying. I really didn’t want to so I went inside but it puzzled me that people should ‘wash their dirty linen’ in public like that.

It’s the same with phone calls in public places. Except they are more frustrating for the inadvertent over-hearer. We only get to hear one side of the conversation.

A ‘private’ tweeted dialogue (through Direct Messages) is not as exciting as the public ones. I have to be careful not to tweet too opeinly using one of my Twitter profiles as it could be blurring my boundary with regards to my MS persona. This is especially confusing because some people are followers of more than one of my accounts. That is blurring the boundaries.

Sunday, 29 May 2011

Let's talk poo (this is not going to be pretty)

(Beware may contain some language/subject matter you find uncomfortable) 

I’ve been feeling a bit shit recently. It has been MS Awareness Week and I’ve been all too aware of my MS.

‘Sugar and spice and all things nice’ might be what little girls are made of but what they excrete is an entirely different matter. There are some bodily functions people just don’t like to talk about. Yet we all experience them. Some of us in different ways.

I remember when my dad was in hospital he had bowel and bladder issues. He found it difficult to know how to say he needed to use the commode. He would forget nurses had fitted a catheter and certainly couldn’t remember the word for it but at least he knew how to say he needed to pee. Every time, I would have to gently remind him that he could just go. It was harder when he needed to poo. He couldn’t find the words. He would often soil himself. I remember once he was in bed and got very distressed but couldn’t tell me why. Eventually he was saying ‘oh I’m going to be very bad’. Unfortunately it was only then I understood the difficulty. I don’t call it being bad but he did shit in the bed. I can completely empathise with his distress.

In my last post I mentioned that one of my MS nurses had wiped my bum when I was in hospital. I had just been transferred to the Neurology ward. I couldn’t walk. I needed to go to the toilet. It was urgent. The nurse got me into a chair and wheeled me the few yards (it was a great room with just four beds and its own wet room). We got into the bathroom but not to the toilet in time. It was messy.

Almost any list of common MS symptoms will mention these:
Bladder and Bowel including: frequency; urgency; retention; constipation; incontinence. (source:

My MS seems to encompass most of these dubious delights.

I suppose I always knew having a weak bladder is no laughing matter (ha!) but when it’s necessary to have a continence advisory nurse (note to self: not an incontinence nurse) you know you’ve plunged a new level. When you can’t tell if what you need is to pee or poo you are in trouble.

Recently I had to pee into a little plastic jar. Twice on the same day. First thing in the morning this was not pleasant but a necessary part of the study looking at the effects of ‘drink on physical and cognitive performance, balance and perceptions of fatigue and effort in people with multiple sclerosis’. Now that’s a mouthful of a research study.

The second urine sample I had to provide was to be given near the end of the exhausting two and a half hour session I endured. I was fatigued, My brain was well and truly scrambled. In the last (walking) test, I was reduced to tears. I hadn’t been allowed to drink anything. 

The next session will afford me the opportunity to drink whilst doing the range of cognition and physical exercises. I expect my results will be better. It’s pretty well known that we function better when we are well hydrated but this study is to establish the evidence for this.

I was worried that I wouldn’t be able to provide more pee. Then I was worried that what I needed to do was poo. I hate hate hate these lavatorial dilemmas. Fortunately, I managed to do what was necessary and didn’t do what wasn’t. Unfortunately, I had to go straight from the research study session to a voice job in a different part of town. I still needed to do a ‘job’ of my own.

I am not often a victim of faecal incontinence. I usually know where toilets are. I normally get to one in time.

You’ll be glad to know this was true of that day too. I certainly was. When I got to the toilet it was very much only just in time. It’s amazing how the body’s functions can be prodigious on a simple breakfast of a banana.

Sorry if you did find this uncomfortable reading (I warned you) and, unlike my last post, not warm and fluffy even if poo sometimes is! 
Excuse me now I've just got to nip to the toilet.

Monday, 23 May 2011

Top 10 unsung heroes*

I’m not much of a singer. I can perform a song and often have. Not drunk in a bar but as an actor in musical shows. I don’t do karaoke, for me singing in public is a paid activity, if anyone will pay me to do it. I once did a great public consultation street theatre exercise (paid) part of which involved me busking in the street. I don’t really play a musical instrument or, as I’ve said, sing but I played requests – CDs on a ghetto blaster. And I danced. It bemused passers by but was a good discussion starting point.

I often sing around the flat and today I would like to sing the praises of some of the people who have had a real impact on my life. My personal heroes. To save everyone’s blushes, mostly mine, I won’t sing musically out loud and will keep them almost anonymous, but I want to mention a few wonderful people.

In no particular order.

My mum – she was a remarkable woman, hard working, professional, intelligent, occasionally scary! She spent a long time campaigning for the release of Soviet Jewry or refusniks and, in her latter years, worked for the Medical Foundation for Victims of Torture. She would have been 85 on 9 June.
And my dad – as with my mum, intelligent, almost unbearably so, and wise in so many ways. After my mum died, my dad was a very important part of my life and vice versa. I love and miss them both. I am glad they have not had to live through the last couple of years since my dx.
My BFF – she is nearly indispensable to me and unbelievably helpful in so many selfless ways.
My sister – a mainstay in my life, particularly since our mum died, even more so when dad became ill then died and since I went into hospital in 2009.
My agent – she has been a friend for a long time and I am lucky to know her and her family well. Her home is a home from home to me as I have stayed there often over the years. She surprised me by visiting (with a friend) when I was in hospital, a four hundred mile round trip.
My flatmate – he has proved himself dependable and considerate.
Jax (nearly her real name) – a friend from university days who inspires me often and makes me laugh every time we talk
Nev (not his real name) – we are in touch less often than I would like but, in years gone by, he was a faithful friend and, if needed, we would drive to the other end of the country at the drop of a hat for each other. He doesn’t live in the same country as me now.
Tanzy – I think one of the first things I might have told her was that she was miscast in a show I was directing. Unusually, I hadn’t been involved in the casting or, indeed, in the choice of play but it went fine and I learnt a lot directing it and her. In the years since and, especially recently, she has been a true friend.
My MS Specialist Nurses – there have actually been four of these but *Top 13 Unsung Heroes doesn’t sound as good as Top 10. Each has been supportive, informative and invaluable in coming to terms with and managing my MS. One of them even wiped my bum when I was incapable in hospital.

I thank all of my 'unsung heroes', including the ones I haven't sung about today. Normal, less flattering service, will be resumed shortly.

Thursday, 19 May 2011


It’s been an odd day. Or perhaps just a discombobulating start to the day. I like the word discombobulated. Try saying it out loud to get the full effect of its loveliness.

The confusion started at about 6am. I suppose waking that early is not hugely unusual for me. In fact I often wake much earlier. 2, 3 and 4am are familiar friends. Unless I have a job that day, getting up and brushing my teeth at 6am is unusual. Getting up, brushing my teeth and pottering around then going back to bed was odd.

Getting up, brushing my teeth, pottering around then going back to bed and falling deep asleep was plain weird. Especially when I heard my meds alarm at 8am, Extremely tired, I put it on snooze three times before obeying and taking my four morning drugs – in order of pill size just for the fun of it. Then I fell asleep again. This is not my normal behaviour.

I vaguely heard my iPhone ‘get going now’ alarm to set off for a mid-morning hospital appointment. I ignored it. When I suddenly woke 10 or 15 minutes later I had no time to shower, breakfast, drink water. I just got dressed and set off for the hospital. Phew! I was going to make it in time.

Then when I got to the hospital, the car park was full. Full with a queue to get in. After a few minutes I gave up on the queue and drove round to the main hospital car park. There was no problem parking there. I even found a blue badge parking bay. Just as well because it is a really long walk from this car park to the other building in the hospital where the neurology department is based. Lots of long corridors. Lifts up, lifts down. It’s not a straight forward route. And when I say 'walk' in my case I mean stumble, shuffle, stagger, weave.

No wonder I was discombobulated.

I hadn’t really thought about this appointment. I suppose I knew that, if I was in neurology, they would need blood and, sure enough, one of the first things my MS Specialist Nurse said was that I needed a blood test. I told her I would have to drink more water first.

It’s really hard to get blood out of me. My veins collapse and I need to be well hydrated and warm to stand any chance of success. I hadn’t drunk anything (apart from a little water to swallow my morning meds) and, because it was sunny, I was wearing a little sleeveless top and thin jacket.

My blood pressure was fine. The nurse took it at least three times. She told me the oddities about what was happening now the drug (Fingolimod) has been licensed before the trial has even completed. Then I talked with the doctor whilst being supplied with more water to hydate me to the max before the blood taking.

My discombobulation was not alleviated by the doctor asking several ‘when…’ questions. I don’t remember when things have happened. Fortunately, she had the bulging folder of notes which is ‘me’. Just me on this drug trial. I dread to think how many trees have gone into the other huge folders of medical notes held by the various hospitals and doctors I have seen over the last couple of years. A small forest’s worth I expect.

Anyway, discombobulation subsided as my MS nurse did her usual chatting to me whilst the phlebotomist took blood. Success. Blood taken, brain connected. And my MS nurse took me through a secret, staff only, route to get out of the hospital.

I was combobulated again.

Monday, 16 May 2011

Speedy virgin

For a mere UKP 7,111 you could buy a VRG1N

That’s a personalised number plate, of course, not an airline, financial product, holiday, hot air balloon, mobile phone, train or any other of the numerous pies Mr Branson probably has a finger in.

For nearly six times that price you could get V1RGO but that probably has a different appeal. Someone with more money than sense? Perhaps that’s why it’s so expensive.

The reason I’ve looked these up is that I thought VRG1N was the number plate on a Range Rover that sped past me on the motorway yesterday. It must have been a different variation of the word virgin. I don’t remember. (This is one of my most commonly used phrases.) Whatever the plate, it was a very distinctive personalised number.

It made me wonder why someone would pay to have a memorable (to someone who doesn’t have cognition problems) personalised number plate and then drive in a distinctive law breaking fashion. Yes, speeding is breaking the law. Yesterday, my cousin told me a way to dodge getting a fine and points on your licence if you are caught speeding. I don’t know if it is guaranteed to work and I’m not going to tell you what it is. And I’m not going to try it. Hopefully, I won’t need to.

I do a lot of driving. I try to be a careful driver and observe speed limits. I do have 3 points on my licence for a speeding offence. It was a Sunday. I was driving from the cemetery where we had just held a stone setting service at my father’s grave. I was going to the cafĂ© where close family were gathering for refreshments. I must have been focusing on something other than the speed limit. The road was very wide and quiet. According to the (new) speed cam I broke the limit by 5 miles per hour.

I got the notification letter about this whilst I was in hospital for a few weeks due to the MS attack that led to dx. I didn’t care about the speeding offence. I had other things on my mind. I committed the offence on a Sunday. I went into hospital by ambulance on the Tuesday. I'd already been ill. Very ill. And nobody seemed to know why.

This is not an excuse for speeding. I accepted the fine and the points on my licence. I might have been able to pay a solicitor to negotiate my way out of it but that’s doubtful. I was in the wrong. It was my own fault. And I don’t have more money than sense. Or a personalised number plate.