As Time Goes By

Every morning my 8am iPhone alarm song tells me "You must remember this" and sometimes I think "why? Why must I remember?" I can't remember what I did yesterday let alone what I am supposed to do today. And I hate anyone telling me what to do. But when that 8am alarm goes off, I know I'm supposed to take my morning meds. And I usually remember to do so. Even if I have put the alarm on pause two, three, four or even more times.

For the last goodness-knows-how-many days, each morning I have thought I must write a blog post. But I hate even me telling me what to do. So I don't. I have thought up lots of posts, things I wanted to say, or titles I like even if I don't know what the post will be about. And then I don't write them. And they're gone. I can't remember what I was going to say.

But not today. Today I am going to write. Today I have the title and I have the post. And this is it. Time has gone by and continues to do so. Sometimes painfully. A very dear friend of mine buried his partner yesterday. Or rather there was a funeral followed by a private short service at a crematorium. It was an inspiring event. The church was packed. Overflowing with love and respect both for the man who was gone and his partner who remained, bearing the unbearable with fortitude. There were readings, reminiscences, songs. And tears. There are always tears.

Everyone remembered good things about the great man who has died so suddenly, too young. And remembering brought laughter, smiles and heartache. I hope I will have what my dear friend had. A partner who is talented, loved, and respected. If the world will always welcome lovers, so will I. I just hope one of them is mine! As Time Goes By

Switched on

What is the first thing you do when you wake / get up? While I’m still in bed I will usually check my mobile – texts, Twitter, Facebook, emails – not necessarily in that order. I often switch on the bedroom TV for BBC Breakfast News.

Today I had a text about a delivery from The DX – I had no idea what it is for until I later got an email and realised it was tickets for an Amanda Palmer and the Grand Theft Orchestra gig in October: Amanda Palmer at KOKO. I almost never buy tickets for things in advance, let alone months in advance. I blame Twitter for seducing me into pledging support for her Kickstarter project. As long as you are cool about a little bit of nudity you can see/listen to one of her singles here: Want It Back

Back to first things. Bathroom ablutions – switch on radio, brush teeth, shower, moisturise face (inc SPF 15 – every day regardless of sunshine), sometimes I remember to moisturise body and/or use suntan lotion SPF 25.

Somewhat unusually for me (and the weather), it has been very hot at night. So today, I stripped my bed of bottom and middle sheets, put fresh linen on and loaded the washing machine which I remembered to switch on.

I might remember to have breakfast, I often don’t. Today I went into the kitchen where the washing machine is and put bread in the toaster, switched it on but completely forgot the toast was there for an hour or so. Fortunately my toaster has a reheat function. So I put the cold toast on the rack and switched the toaster on again. I had already switched on the TV and my laptop.

I had also remembered to take the battery for my new electric bike off charge. I had switched it on last night. So as well as driving a hybrid car which automatically switches between using the electric engine, the petrol engine or both, I now can use an electric bike. It is fabulous and I paid extra to have a throttle so I can get going from a standing start. This is particularly useful for me as I live at the top of a hill and there are traffic lights at the bottom.

I sold my existing folding bike and am giving my ladies mountain bike to my BFF. Her current bike is very old and a bit decrepit. She cycles pretty much every day so it’s going to be good to be able to replace the ancient with something far less rusty. I know she’ll try to pay me for it but I will refuse. I owe her so much. Both monetary and other kindnesses. I’m not sure which one of us will win on that. She’s coming round at 7 so hopefully I can persuade her that buying me a meal at a pub will be good recompense. She is walking to my flat and we will cycle to our favourite local hostelry.

It’ll be like being teenagers again but with fewer zits and less electronic devices. Have you been counting how switched on I am? PS I always switch devices off but my conscience stays mostly switched on all the time.

It's no joke

For a really long time I have tended to identify myself by my job - I'm an actor. I usually say 'actor' rather than 'actress' possibly wary of dodgy jokes about the actress and the bishop or because I'm from a medical family and all too aware that you don't say 'doctress' - my mum was a doctor.

After 'are you famous?' (to which I'd like to respond 'do you know me because if you don't I'm not famous' - I'd like to but sometimes that would just be rude), one of the most common questions I get asked is ' how do you remember your lines?'. I used to be really good at learning lines. Rehearse a scene once and I would quickly know not just my lines but every other character's. Now, with my scrambled eggs and failing short term memory, it is incredibly hard for me to learn lines. 

I still do it because that is a big part of my job. But the other day, at the end of a rehearsal, my director said 'And Toots, learn your lines.' I responded, 'I have learnt my lines'. She said 'Well learn them better.'

It was a fair comment but a bit like being told 'Act better'. I know I am not doing my job as well as I should or as well as I did. I will be filming on Sunday and haven't learnt my script yet. I am performing tomorrow evening and still need to 'learn my lines better'. This morning, I had a casting and am not convinced I had entirely learnt the two scene script, an essential component in screen auditions.

When I was going through a really tough time, not long after dx, I wondered what would happen if I could no longer do my job. Would I lose my identity entirely? I've always said if you can see yourself being happy doing anything other than being an actor, then go and do that instead.. When you are working, it is the best job in the world but also one of the hardest. You never know what is going to happen - where, when or what your next job will be. I don't even know if I will be physically or mentally capable of doing the next job, whatever it is.

Just at the moment I am insanely busy. I know I am doing too much. I know I am possibly not doing things as well as I should. I am heartened by positive feedback and good reviews but as my character draws on in 'Quiz Night at the Britannia', "you can fool some of the people all of the time, all of the people some of the time but you can't fool all of the people all of the time". See, I do know some of my lines but it's no joke.

I didn't run the London Marathon

Sunday 22 April was a big day. I had been building up to it for months. I didn’t know what it was going to be like but expected something special. I didn’t run the marathon but it was a mega marathon-like achievement for me. @Dr_Neil_ (my flatmate) had asked me ages ago to keep the date free but steadfastly refused to tell me what we were going to be doing beyond it would be partially outdoors and I should take Jemima.

On the day itself he still wouldn’t tell me where we were going until I was in the car. I hadn’t guessed we would be doing this: PenguinEncounter at Seaview Wildlife

Not only had @Dr_Neil_ booked our ferry across to the Isle of Wight and the experience at the wildlife centre, he had also booked a table for us to have lunch at a lovely pub: The Boat House. And then we had time to kill before our ferry back to the mainland so we had a wander round various attractive locations and even had time to play some games in one of the amusement arcades. I’m not sure how I feel about our newly acquired additional flatmate even though I had to admire @Dr_Neil_’s skill with the claw crane to get him -  

The picture next to the smurf is one I took using @Dr_Neil_’s fancy camera. It was actually a double rainbow starting and ending in the sea.

The rainbow was just part of a wonderful day. The sun shone for most of it. We had an easy ferry ride across to the Isle of Wight and when we got to Seaview Wildlife it was fabulous to see so many different birds, otters, meerkats, wallabies and other creatures including fish. As well as beautiful live fish in tanks there were dead ones for us to feed to the penguins. It was an amazing experience. After joining other visitors in giving individual fish to a few penguins whilst they were swimming around,  

we were taken into the enclosure and given a bucket of fish each. Despite the warnings on most visitor information that penguins were not to be touched, we were encouraged to stroke and even tickle the tummies of a few individuals including the oldest resident.  

I had originally said I had no intention of ‘following’ a penguin on Facebook. Needless to say, having met Dippy it would be rude not to ‘like’ his Facebook page.

It has taken me a couple of days to recover from the marathon day but every second of the exertion was worth it. I must have walked a mile or more using Jemima over the course of the day and I have some wonderful memories if only my scrambled eggs will let me remember them. Thank goodness I also have the photographs http://www.flickr.com/photos/69825128@N00/sets/72157629513458338/. 


I expect my experience matches that for excellence of most London Marathon runners. They may have had to go the 26.3 miles or so distance but I went as far in my own way. Next year I may even join my MSer friend who recently walked a mile for Sport Relief - http://my.sportrelief.com/sponsor/sarahssportreliefmilewalk I expect you can still sponsor her or you could save your pennies for me - big stuff is happening and I would like as much support as possible. It starts with Cake! Cake Break

Losing it

I lost one of my pills dockets the other day. I also lost the ribbons which denote which is the front and not the back of my bag. I’ve lost so many things.

I did not lose my parents. My mum died. My dad died. That’s not the same as losing but it is a loss. A loss that I grieve for. Particularly on my youngest nephew’s birthday which is the same date as the anniversary of my dad’s death – 17 February.

It took a long time for me to be able to say my mum or my dad is dead. It sounded so final. People would offer condolences for my loss but I always thought – she/he’s not lost. I know exactly where she/he is, or rather I know exactly where both my mum and my dad are buried. Where they are now is perhaps different. They remain in my heart and in my thoughts. Especially when I lose things or things seem to disappear or mechanical/electrical things go wrong. I think my mum or dad are playing tricks on me. They’re reminding me to think of them. And I do.

What else have I lost? Well, I’ve lost my ability to remember things. My ability to remember my diary. I used to be able to keep a whole tour schedule in my brain as well as having it written down.  I’ve lost my sense of spatial awareness and geographical awareness so I don’t remember routes. I will arrive somewhere and, when I come to leave, I can’t remember whether I turned left or right to get in and therefore whether I should turn right or left to get out.

I hate losing things but I’m not losing my sense of humour. I’m still remembering that there’s more to life than little things and I’m just going to carry on as long as I can. I’ve not totally lost the plot. Now, which way do I go from here?

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.

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 - http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1264 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?

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.

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.

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 50^th 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)

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?

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?

Discombobulated

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.

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.

Patterns of life

I have never had a fixed pattern to my life. I didn’t do anything regularly. Okay, I brush my teeth every morning when I get up. That scuzzy unbrushed feel is horrible.

Oh and I went through a stage of early bird swimming every morning. That’s getting into a swimming pool at about 7am and swimming x number of lengths. It was a long time ago. I was younger then. I lived in Hull. These things are not in fact related.

Now I have to schedule things – daily, weekly, so many routines. Meds at 8am, 2pm, 8pm. Restock week’s meds docket on Sunday. Hang on, that’s all there is in my repeated iPhone alarms. Thank goodness for no longer injecting Rebif three times a week. Each injection involved a series of alarms – cool bag in freezer, cool bag out and put on injection site, inject, take paracetamol.

Even with the alarms I will still sometimes forget to do something. For example, I will stop the alarm and then not take the meds.

And then there is the four weekly collection of repeat prescriptions and the associated phone call to/from the pharmacy. The bi-weekly reflexology sessions – a pleasure but I still have to remember to go to them. The four-weekly massage – again a pleasure. The weekly visit to the Disabled Living gym on a Wednesday morning. All these have to be programmed into my phone and written in my filofax.

Also there are non routine things. If it’s not written down, in multiple places, I will forget to do it.

Every hospital appointment is diarised. Social events are programmed into my phone and alarms set. This is not always a guarantee that I will leave on time or, sometimes, even remember to go. Once I had been really looking forward to a meal with actor friends at a house I hadn’t been to before. The occasion was going to be such fun. We don’t often all get together for non-work reasons. It was written in my filofax and I had worked with the host the previous week and said how pleased I was to be going to it.

On the evening I got a phone call at about 7pm. “Where are you?” He thought I might be lost on the way. I was sat at home blissfully unaware. I got in my car, drove for an hour or so, didn’t get lost. They waited the main course for me. It’s great to have good, forgiving friends.

Last minute doesn’t throw me. I am used to it. One of the consistent patterns of my life has been not to have consistency.

It’s a little annoying when it’s sleep patterns that are not consistent. Or rather when the consistency is waking up at 2 or 3am. I broke the pattern last night by not going to bed until after 3am. It was possibly not the best thing to have done. Especially when I woke well before 8am ready to take my morning meds. About two hours before. And I still brushed my teeth first thing.

Are you a creature of habit?

A Vague Memory of Today

Today has been a good day. A sunny day. A day with friends. I have enjoyed today.

Tomorrow I may have forgotten today.

At one point today the conversation turned to something that I knew related to something I had done recently. I didn’t remember what. In fact now I don’t remember the conversation.

This is how it is. Occasionally it bothers me but mostly nowadays I can shrug and accept that short term memory lapses are common to many people. I would like to remember how today started but I’m honestly not sure.

Thinking back I know I was running late this morning. I used to be a very punctual person. Always ready and waiting. Early in fact. As an actor, I abide by the concept that if you are not five minutes early, you are ten minutes late. My friends were coming to pick me up at quarter to 12. They are renowned for being late. However, recently they have started being on time for things. It’s very confusing!

Just before 11.45 there was a knock at the door. I let my BFF in. It didn’t take me long to put food in a cool bag, grab my friend’s birthday present, find my sunglasses, put on a light jacket, deliberate over what to wear on my feet. I was the one who was late. My friends waited for me. They’ve become very patient with me and learned that I am not the same person I once was.

So, before I forget, today we went to Waterperry Gardens. BFF’s husband set up an easter egg hunt. He hid little cards with eggs printed on them. There were small, medium and one large card. The idea was find the cards and then claim your egg. There were a couple of drawbacks to holding this private easter egg hunt in a public place. Firstly, other groups of people had the same idea and their eggs were hid around the place too. Secondly, BFF’s husband hid the cards over a huge area of the gardens/fields. I am not experienced in such things but I suspect easter egg hunts are more manageable and less time consuming when confined to a single building/garden

I walked over to the nearest possible bit. I was already tired out by the time I got there. I had a little look around and then BFF’s husband gave me a hint as to where a couple of the cards were. I found one and considered that was enough for me.

After a long time (it was an epic easter egg hunt) we sat in the sun (sun shy folk sat in the shade) and had a huge picnic. As is usually the case, most of us had brought more food than we could each possibly eat. We played some games. We sat and chatted. Some of us looked round the garden centre. Some of the children climbed trees. Some of the adults joined them.

It was a good day. It may not be a hugely memorable day but, with me, even the most memorable days are easily forgotten.

Bathroom thoughts

I’m a shower girl. Always have been. A long soak in a bath is all very well but nowadays it could be tricky for me.

I have a shower bench across my bath which would have to be removed. I would have to feel strong enough to be able to get in and out of the bath. (After being in hot/warm water for a long time, my balance is sometimes particularly dodgy.)

Anyway, I don’t think a bath really gets you clean. It uses a lot of water and you wallow there amid the soap and your own dirt. With a shower the water is fresh and you use less of it. I have a shower every morning.

I love my bathroom. It’s not huge. It doesn’t have room for a chair. There’s a sink, a toilet, a cupboard, a bath with a shower over it. Nothing special you might think. But I think my bathroom is particularly conducive to creativity, dreaming and play.

I have a watery, beach theme to the room. There are pictures of dolphins, boats, beach, whale and palm tree. A visiting friend somewhat doubtfully commented that it has a 'strong' theme.

Indeed it does. It’s a theme I find inspirational.

I come up with all sorts of ideas whilst I’m having my morning shower. In my head, I write.

Unfortunately, I suffer from very poor short term memory. I didn’t use to. It’s a MS symptom that particularly annoys me.

I have no idea how many great bathroom thoughts have escaped me within minutes or seconds of completing my ablutions.

I do know one of my thoughts was that it would be really good to have a waterproof dictaphone type apparatus in the shower. When I’m out and about I often record thoughts as voice memos on my iPhone. I want to be able to do that in the bathroom too.

I do keep a pen and post-it pad in there. But even remembering my thoughts between having them in the shower and getting out of it is not a certainty.

It is possible to buy waterproof or, more accurately, water resistant radios for the bathroom/shower. I want a waterproof recorder.

If it's Tuesday it must be...

There have been many times in my working life when I have been in a different town each day. I used to remember things and know where I was going to be every day. If asked, I could usually reel off the forthcoming destinations without looking at a list or my filofax. I am still essentially a pen/pencil and paper girl. I write appointments down. I put them on the calendar on my iPhone. I keep lists. Nowadays, I have to look at these otherwise I often have no idea where I’m going to be tomorrow, where I was yesterday, sometimes even where I am today.

This week I know where I am and I’m not at home. It’s easy. I’m in one city, although over the weekend I travelled to three different places. The third of those was where I am now. I’m in the same hotel for four nights, working in the same location each day. The job is for people who’ve used me many times over the last few years. They are lovely, well organised, professional and friendly. Today for the first time I told one of them that I have multiple sclerosis.

She had made the totally excusable and common assumption that I had a walking stick because I have something wrong with my leg. She wanted me to know there was a different (shorter) route in the building I could use. I don’t always let people see me with a stick when I am working. I am not ‘out’ as a MSer professionally. Indeed, on this job, I was quite discreet about my stick, not using it around the building, but I had to use it to get there as my balance has been a bit off recently and it was quite a long walk. Delightfully, when I explained to her that I have MS but don’t usually tell people, she took the very positive stance that it made no difference and was nobody’s business but mine.

This is how it should be and today this is how it was. I wish I could be sure everyone would have the same non-prejudicial mindset.

One thing I do know is that I don't know where I am next Tuesday.  I'll have to look it up in my filofax.

March-ing onwards with Spring in my step

I have been putting off creating this blog for far too long.

I put it off. I gathered thoughts for it. I even jotted some down.

Then, as soon as the blog became more concrete in my mind as something to start, much of my commitment to it fizzled out. I am spectacularly good at procrastinating. I intend to do things. I even intend to do them NOW. Then I get distracted.

My, recently acquired, appalling short-term memory hasn't helped.

However, today I've done it. I've created a new blog, for the first time, Well, actually, the second time - my first attempt an hour or so ago had to be deleted because I mucked up the header design before I'd even published a single post. This time I've gone with simple. Simple is good.

I needed to start it today. It's 31st March. I wanted to use my naff post title - I don't have a spring in my step but it is undoubtedly Spring and it is the last day of March. Last chance, until next year and who wants to wait another year?

Whilst thinking about it, I don't spring. I don't jump. I don't run. I don't gambol like a lamb in the fields. Not on the outside. Not physically. But in my head, I can. In my head, I can surmount the limitations my condition places on me. Sometimes.

I have Multiple Sclerosis.
I'll have had it for years, many years, probably at least 17. I've known I have it for less than two years. If I manage to keep posting on this blog I will tell more about this, more about me. If anyone reads this perhaps they will get a glimpse of a life that has changed, the life that it was, the life that it is now.

For now, I'm pleased to have started a blog. I am marching onwards, you can imagine the spring in my step - I do.

This is how it is.