What's the worst that can happen?

According to www.brainyquote, Plato said ‘Death is not the worst that can happen to man.’ I don’t have a fear of death. This is not to do with any religion or belief in afterlife. Dying is not the worst that can happen. Dying painfully in a long drawn out suffering way probably is.

I’ve watched both my parents die. I hated seeing them in pain. I hated that conversation with a nurse/doctor who tells you there is nothing else they can/will do. I don’t want to put anyone in that position for me or be the one who has reached the end but can’t just stop. Who doesn’t have the choice.

Not too long after dx with RRMS I was offered the opportunity to go onto Disease Modifying Drug treatment. Like many MSers, I went to the MS Decisions site to help choose which DMD I wanted to go on.  I am not a gambler but taking any drug is a bit of a gamble because it is hard to know which of the possible side effects you might experience. I wanted to be proactive. I wanted (and still do) to take something to extend the time until my next relapse and the impacts of one when it came.  But I quickly decided I couldn’t take a drug with a potential side effect of fatal brain disease like PML (Progressive Multifocal Leukoencephalopathy). So Natalizumab (Tysabri) was not for me.

So I won’t take a drug that might, just might, cause serious brain infection which usually causes death or severe disability but I will consider and do crazy things like falling out of aeroplane, walking down the side of a hospital, flying a glider, riding a bicycle.

You might not think riding a bicycle is very risky. I know it can be. According to RoSPA, ‘Every year in this country around 19,000 cyclists are killed or injured in reported road accidents, including around 3,000 who are killed or seriously injured.’ As a car driver, I know cyclists can appear invisible and unpredictable to motorists. I grew up cycling. Until three years ago, I used to cycle pretty much every day. I owned two bikes – a ladies mountain bike and a folder. Both were Giants – it’s a respected brand of cycle.

But after relapse/DX in 2009 I couldn’t ride them any more. I can cycle. My legs go round. But, as I’ve previously blogged, I live at the top of a hill and whichever direction I would cycle in I would end up having to go up hill at some point. And that’s if I could get on the bike to start with.

My mountain bike didn’t have a horizontal cross bar like a man’s bike but the angled bar was sufficiently high for me to have problems getting on and off. The bikes sat in my rented garage, unused, unloved. It takes a lot to admit to yourself that it is time to get rid of something you once held dear.

The physio at the Disabled Living gym I go to once a week knows my love of cycling. I use the exercise bike at the gym – 10 minutes each time unless I’m having a bad day when I might only do four or five minutes, or none. She recommended Wheels for All to me. I went to one of their local sessions. Tried out a tandem, a hand cycle and a trike. I loved it. In fact I loved it so much I went out and bought my electric bike.

Last weekend I cycled to Blenheim Palace for Bike Blenheim. It’s about 11 miles there. On Saturday, according to the bike computer I bought to make sure I didn’t break the 15mph speed limit that applies to electric bikes (or at least didn’t break it too often), I rode 23 miles. TWENTY-THREE MILES! Of course, I wasn’t pedalling for all of that – thank goodness for the throttle which allows me to ride without anything more than a twist of a handle. I spent most of my time at the Cycling Projects/Wheels for All stand encouraging people to have a go on their adapted cycles. On the way home from Blenheim, I stopped off at the cinema in town so that I could watch a film (sit down in a cushioned seat) for a couple of hours.

I did the same the following day. I had thought of driving there but the lure of the cycle and a sunny day was too much for me to resist. I told the volunteers that I would like to be a volunteer for future Wheels for All events. I think the next training day isn’t until February but I hope to do it.

Again, on the way home, I stopped at the cinema for a sit down. Whilst cycling and then locking up my bike, I thought how much easier it used to be when I had a moped. Helmet on, key in the ignition and off you go. No pedalling. I wonder what the statistics are for death/serious injury following an accident as a moped rider. What’s the worst that can happen?

PS I’m probably not going to buy a moped

10 things I (probably) wouldn't have done before

Before means before DX

1. Fallen out of an airplane, deliberately that is and without it being an aerial emergency. Other people call it doing a tandem skydive. I did mine in aid of the MS Trust – they have today asked me to draw attention to a BBC R4 Appeal by one of the MS Trust founders, Chris Jones. It will be broadcast this Sunday (20 May) MS Trust Appeal 
2. Flown a glider. Ok, I had previously had lessons in a fixed wing microlite and both two and four seat Cessnas but it’s really expensive doing those sorts of things. Now I seem to delight in the challenge and joy of being up in the air. The literal embodiment of so much of my life?
3. Abseiled – I certainly never considered doing this before but now I have the opportunity to do it for charity (and I only really came upon this due to spending so much time at the hospital). So show me the hunky man holding a rope out for me and I’ll be on my way! You can sponsor me here: http://www.justgiving.com/RuthCurtis-abseil
4. Ridden a segway – such fun that I am doing it again in a few weeks time. This is not in aid of any charity, unless you consider me having a good time is a charity and you would like to give me money to have fun. It certainly does my soul good!
5. Hosted a Cake Break in aid of the MS Society UK.
6. Hosted a Cake Break in aid of the MS Society UK.
7. Hosted a Cake Break in aid of the MS Society UK.
8. Hosted a Cake Break in aid of the MS Society UK. I know this is cheating a bit but I really am coming up to my fourth Cake Break and I doubt I’d even have held one if it hadn’t been for my own MS. The one on Sunday 10 June is incredibly special as writer/broadcaster/comic (and all round lovely man) Hardeep Singh Kohli will be cooking lunch for 40 people in my flat. Extraordinary and definitely attributable to my DX.
9. Spoken at the Royal Institution (see previous blog post)
10. Started blogging. I already used Facebook and Twitter and I enjoyed reading other people’s blogs but this is different. This is for me, and for you. I hope you enjoy reading. Perhaps I should start telling some jokes to make it more entertaining J

There was this doctor and this woman and a really bad MonSter… no, that’s not a joke. Just go to this site for some giggles: Squiffy's Joke Emporium (I wouldn’t have known about it before DX)

Please help me mark my 3rd DX Anniversary. It’s All4Cake! Cake Break

(Happy?) Anniversary

Do you celebrate your birthday? Yesterday was my BFF’s birthday. I didn’t see her but had dropped off a card and pressy with her husband the night before and I’ll see them both tomorrow when we and some other friends go to the theatre. Very cultured! Today is the anniversary of my mum’s death. I might visit her grave. I remember in 2005 apologising to my BFF because I hadn’t helped her celebrate her birthday – it was the day before my mum died so she excused me.

I think it’s really important to mark birthdays. If only to show respect for the mother who gave birth to you – just think how much hard work she put in that day! An MSer friend of mine is in the Silver Star unit at the JR hospital due to be induced today. I’m hoping all goes well for her and look forward to meeting the new member of her family.

I feel like MS has become a member of my family over the last three years. At first it was an unwelcome guest but now it’s just part of me. Not all of me and not instead of ‘me’. I will soon be introducing my MS to a new audience – I have been asked to speak at an MS Society UK reception at the Royal Institution. I need to outline my 3 - 4 minute speech. I’ve looked back in a diary to see what was happening 3 years ago when I was in the relapse that led to DX. There is no note for today on 2009. Things really hotted up a few weeks later. In fact I was taken into hospital in an ambulance on 9 June 2009. 9 June was my mum’s birthday. Another anniversary.

For now I have to write my speech, a Gilenya diary entry for MSRC (similar to their Tysabri® User Diaries) and a press release for my Pre-Cake Lunch with Hardeep. Perhaps I’ll just pop out to the cemetery first.

Please help me mark my 3rd DX Anniversary. It’s All4Cake! Cake Break

Pretty as a picture

This is not a pretty sight but then MS is not pretty.
Since the early days, post DX, I've often wondered what my lesions look like. How many there are, exactly where on my brain and in my spine. I've seen pictures of other people's MRI scans. Do a simple Google search and you will come up with a wide variety of images. Or find it on Wikipedia: Wikipedia Multiple Sclerosis MRI.gif

Today for the first time, on Facebook, I saw something other than the black and white images or diagrams. A picture purporting to be showing Multiple Sclerosis lesions. It was posted on a Multiple Sclerosis Information page. It looks horrible:

I hate to think bits of my brain look like this. They probably don't. After the picture had been shared on various Facebook walls (including mine) this comment was posted:
Dave Curtis Um, no, MS lesions do not look like this. This is a random JPG which somebody hijacked. A more plausible explanation for it is that it shows tapeworm infestation as explained here (you'll see how the original text got removed from the doctored image you have): http://www.scienceinafrica.co.za/2002/june/worm.htm

Tapeworm and the brain

I'm glad that is not what the lesions on my brain look like. However, I still want to know how many lesions I have and where. I still want to see my MRIs. I've had lots. Been in that machine time and time again. During the journey to diagnosis I think I had two or three. Since then I've had at least another four as part of research projects. I am a willing participant in research. It may not help me directly (except for the wonder drug trial) but if it helps medics, scientists, anyone understand this condition better then that has to be good. As well as taking part in research trials I am increasingly involved in other MS related activities and fundraising. For me it is personal.

If you ever hesitate about donating to an MS cause please remember the lesions. Imagine them as part of you. Inside you. On your brain. Imagine there not being a cure. Imagine living every day with the effects of those lesions. You may not be able to take part in research but you can take part in other ways, for example: http://beatms.mssociety.org.uk/netcommunity/toots
Bake a cake, take a picture of it. Make it a pretty one. Email the photo and the recipe and it could be part of the fundraising booklet CakeMumBaked. I will be sending in a recipe. Will you?

Pip pip cheerio

I don’t want it to be too late. I am not ready to say goodbye and yet so many things/people have gone. Tomorrow is another (big) day. There is going to be a meeting between the Prime Minister and some senior health officials (I say ‘some’ because many have not been invited) to talk about the government’s misguided Health and Social Care Bill. You can read more about it here: http://www.bma.org.uk/healthcare_policy/nhs_white_paper/index.jsp

This is not really what I want to blog about. However, my family and I have benefitted massively from the care available for free through the NHS. It seems important to bring this up now.  I hate to see it so hugely under threat.  I don’t want to say goodbye to my NHS.

I have been doing a lot of looking back recently. It was the anniversary of my dad’s death on 17^th February. As I have said before, I am glad he (and my mum) did not live long enough to know about my MS but I still miss him.  At least I got to say goodbye.

I also miss Him. He is not a god but He rocked my world and not in the mostly negative way MS has. I haven’t said goodbye totally to Him.  But I have to carry on without Him, without the regular phone calls every evening after my 8pm meds, without His strong arm to support me when I stumble, without His encouragement to eat three meals a day, without His vocal concern over the amount I overdo things. 

And I do overdo things. Despite my MS. There are pros and cons to my diagnosis and the management of my condition.  I receive Disability Living Allowance (DLA) in addition to my Working Tax Credit. The latter is due to the low level of my earnings as an actor. I worked before DX and I still work now, when I can.  That is usually down to when I get jobs. As a freelancer I am likely to take whatever acting jobs I can get.  There seems to be less work around nowadays.  I am not ready to say goodbye to working.

I also don’t want to say goodbye to DLA.  Without it I don’t think I would have my Blue Badge, my Disabled Persons Railcard, my bus pass, the disabled element of my Working Tax Credit, my NHS prescription exemption certificate.  At some point my DLA may be replaced by PIP.  http://www.dwp.gov.uk/policy/disability/personal-independence-payment/

Too many goodbyes. And none of them as seemingly cheery as that in Oliver Twist: http://youtu.be/siWscozkRr0  MS allowing, I’ll be back soon.

Who do you think you are?

Another day, another song - Jar of Hearts by Christina Perri. It’s the ‘Who do you think you are?’ lyrics that resonated with me because of MyMan deciding he can’t ‘do’ relationships until he has ‘found’ himself. I have a friend who would like to “shake him till his eyeballs rattle”. I can’t help but agree.

Who I am has changed a lot over the last few years. When I first had DX my MS Specialist nurse often told me that I should remember I am still me. I have MS, it doesn’t have me. Except it does. My MS affects nearly every bit of me and my life. I read the Spoon Theory by Christine Miserandino for the first time today and thoroughly recommend it as a way of understanding what it feels like to have a major medical condition: Spoon Theory

The year before DX I was a different person, just getting used to my dad having died. Getting used to being an orphan as a friend slightly thoughtlessly, if literally, put it. I didn’t really understand how badly I was bereaved. Dad died in 2008, Mum in 2005. I don’t remember going through the Seven Stages of Grief but when I became thoroughly depressed with my MS I began to recognise my bereavement. I had lost my parents and I had lost myself.

I don’t know when or if I have found myself but I think I have. Or at least I am on that journey as we all are. I don’t think it’s finite because I think we are always changing. I’m pretty sure I have been a good girlfriend. Supergirlfriend I have been labelled. According to MyMan, I tick all the boxes. And yet now I am alone again.

The real irony is that I may shortly be helping with some publicity for the MS Society Cake Break. I commented on this wonderful lickingthehoney blog spot Sharing a Sharps Bin saying that “I met MyMan at my CakeBreak in aid of MS Society so he knew from the start that I have a lifetime condition.” I went on to say “None of us can truly know what a relationship will turn up.” Little did I know that my relationship was about to end. Little did I also know my story would catch the eye of a Press & PR Officer who is working on the PR for this year’s Cake Break. She finds my story unique. I don’t know if it is. I do know hosting Cake Break had its fringe benefits for me. I don’t know who I think I am believing anyone else would be remotely interested but let’s hope they are. Let’s hope more people join in with fund raising and eating cake. I certainly intend to. Now should I invite the ex-MyMan to my Cake Break this year? We found he does make an exceedingly good cake.

Pythagoras Theory and other things I've forgotten

This may be a short post, not because there aren't many things I have forgotten. It's more that I have forgotten what I have forgotten. Yesterday I strangely remembered forgetting Pythagoras Theory.

I used to be good at maths. My dad was a mathematician and a few years ago I even played Ada Lovelace (look her up) in an interactive production which meant learning more mathematics than I'd known before.

But many more years ago, long before diagnosis (BDX), I was working on a project involving an outdoor performance with a train structure that would convert into a cake (don't ask). To make the slices of cake I was working with triangles and needed to use Pythagoras Theory for the dimensions. I couldn't remember it and, in those ancient days, did not have use of Google so couldn't find this: http://www.mathsisfun.com/pythagoras.html

Having inexplicably remembered my Pythagorean lapse yesterday, I realised I still couldn't remember the straightforward equation a² + b² = c² so I looked it up.  I recognised and understood it. Today, again I couldn't remember it. I also couldn't remember the Spanish for garlic. This is not related except that I needed to know the latter to communicate in an Austrian restaurant.

Again this was BDX. It was a Valentine's weekend surprise. I like to know at least some words in a language before visiting another country.  I didn't expect to be in a German speaking country. I hadn't brushed up on my vocabulary. The waitress spoke no English, I didn't recognise all the German words on the menu so we were talking in Spanish. As a vegetarian in a big meat eating country, I wanted to check what I could eat. I had never learnt the word knoblauch for my German 'O' Level but I did learn ajo whilst doing Spanish 'O' and/or 'A' Level.  I didn't remember ajo when the waitress said it. She had to resort to bringing a head of garlic out from the kitchen to show me. Again today I couldn't remember either word. I think both of those lapses in memory are entirely forgiveable and, even without my faulty scrambled eggs, quite understandable.

However, today I also struggled to remember the name of the actress I was assigned during a New Years Eve party last night. I could remember many of the eliminating questions I had asked, and the yes/no answers I got but not the name. It was like playing the game again. On my own. And then I got the name back. Kate Winslett. One of the other guests had said it was highly appropriate for me to be given that person to be because the dress I was wearing was like one she would suit. The red dress. I think it was a compliment. I silently applauded myself for remembering Kate.

One of my early MS relapse symptoms (not that I knew it at the time) was completely forgetting the well used, familiar pin number for my ATM card. I know it now and I'm not telling you. No, it's not my birthday though that is in less then two weeks' time - a gentle hint for anyone who knows me!

I think I am now used to forgetting things. I forgot how I had met three of the other guests at last night's party. I had shared two long car journeys with the family just a few months ago. It didn't particularly matter that I couldn't remember this. Nor is it important that I don't know Pythagoras Theory or the Spanish for garlic. But for 2012, I would like to remember. Remember what? I don't know. I've forgotten.

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

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.

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.

Tempting fate

It’s June 9^th. 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?

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.

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 café 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.

Too tired to move

Fatigue is not just a fancy word for tiredness.

Fatigue is a symptom.

For the first year or so after dx, I was not good at dealing with fatigue. I wrote "When exhaustion hits, the fatigue is absolute and sometimes crying is the only relief / thing I can do." I rarely cry about it now but I do sit unable to make myself walk the few yards from my settee to the kitchen. I once felt the fatigue wash over me whilst stood at a supermarket check-out. I had to wait for it to pass. Thankfully, it was a minor fatigue sea otherwise I wouldn't have got my shopping home.

As I write this, I'm sat wired up to a portable ECG monitor. I need to take it off but I'm too tired to get up and do it. 

I am glad to be wearing the monitor because it means I have restarted the trial. I'm back on the (to me) miracle drug which has replaced my horrible self-injections of Rebif.

I hate failing but I have never been so happy to be deemed a failure as when I was told one of the reasons I could join the new DMD trial is because I am a clinical failure with Rebif. Not because I had a relapse but I did have continuing injection problems such as site reactions, pain and difficulty injecting.

This drug is a one-a-day capsule. Easy. I was unfortunate to start the trial but then immediately be hit by a horrendous viral infection which became a bronchial infection. Chest infections/problems are a known side effect of this new drug. I developed the problems far too quickly for them to be associated with the drug but severely enough that I had to suspend taking it.

Now I’m back on the drug and I’ll be able to continue as long as this ECG doesn’t show any problems. I’m lucky that the hospital didn’t make me stay in for the six hour monitoring. Protocol says that I have effectively had to start the trial again from the beginning. This would normally mean a long day at the hospital being tested, monitored and examined followed up by being sent home connected to a 24hr portable ECG monitor.

Fortunately, my blood pressure on previous monitoring has been excellent. All I have to do now is take the blasted monitor off but I’m too tired to move.