The MonSter within

This Month’S MiSsive is brought to you by the letters M & S  (not the well known retailer)
I’ve always been Ms – if anyone telephones and asks for Mrs so-and-so I know they have no idea who I am. A caller once asked if they could speak to Mrs Morrell – my departed boyfriend (not dead, just left me) was Mr Morrell. We had always been MarvellouSly unmarried. Unsurprisingly, I wasn’t thrilled to receive that phone call. Even if an unknown caller gets the correct surname, I’m unlikely to want to talk to them and rarely give out my landline number – Mobile’S best for me.

Let’s suppose my surname is Stuart. It’s not but I quite like the idea of being Ms M.S. It is common for me to be cast as an unnamed female character - Mum or Teacher or Nurse etc. I recently played Headteacher in a short film. The writer/director agreed I could call her Ms Mary Stewart. It always looks better for your character to have a name on your CV. I went with this name as I was drawing upon BBC newscaster Moira Stuart for the headteacher’s voice. Ms Stuart has gorgeous tones and is a joy for me to hear on BBC Radio 2 in the MorningS.

Anyway, as Ms Stuart I might get a junk phone call asking to speak to Mrs Stuart – I will ask who is calling or, if I’m feeling grumpy, I’ll just say there is no such person ignoring the fact that my sister-in-law is Mrs Stuart, my mother was Mrs Stuart, and there must be nuMerouS other Mrs Stuarts in the world.

Ms is not the same as Miss or Mrs but can disguise either. My Sister is a Dr (not medical but she has a PhD so doesn’t have to be Ms, MisS or MrS). I don’t even have a MSc. I am a Ms with MS. The MonSter pervades my life. On a Facebook forum today, another MSer posted the idea that referring to our condition as MonSter is negative and we should alternatively go with MeSsenger “telling you to slow down, rest up, eat well and love the good things and people in your life “. A bringer of tidings, good and bad?

I think I’ll stick with MonSter. I quite like MonSters – they can be friendly MaSsive MateS. Their MiSsion is not always MadneSs. The MeSs my MonSter brings may not be something I would have wanted to join. However, MemberShip changed my life MaSsively in a MilliSecond in MillionS of ways, not all bad but I’m still discovering what they are.

The MuSic of my life is an unknown ManuScript MoStly played out in MicroSoft packages or eaten with dodgy quantities of MSg. If I make MiStakes, I proMiSe to recoMpenSe as best I can.

This xMaS I have not kissed under the MiStletoe but I have MuSed on life and love. I am making MoveS forward. It is not iMpoSsible to change. I have MS but I won’t go backwards. Let’s face it – I don’t do SM. I’ve got enough pain going on already.

Enough

The bruise on my thigh got bigger and blacker. But this wasn’t the worst of it.

On Tuesday evening I didn’t fall but I did break my foot. I don’t know if the trip/stumble as I went into my bedroom was related to the fall from my bike on the Sunday. Perhaps I was even less steady on my feet than a ‘normal’ person might be. Perhaps I was simply overtired from having been to London and back for a casting. Whatever the case, as I went through my bedroom door, I stumbled forward and banged my foot against the edge of a chest of drawers.

I knew straight away I had hurt it badly. It hurt far more than stubbing your toe usually would. It crippled me. I wondered if I had broken anything. It was late and I didn’t want to do anything about it that night. I didn’t think there was anything that could be done. I went to bed.

I don’t think I slept very well. The pain did not go away. By the morning it was throbbing and one of my toes was swollen but not black and blue. I wanted to know whether there was anything in particular I should do if it was broken. My GP was concerned that the pain and slight bruising wasn’t just on the toe but into the foot. She referred me for X-ray meaning that I could bypass some of the queuing at A&E. The radiologist was swift, efficient and helpful. Yes, a broken metatarsal. Triage was also reasonably good: “Apart from my MS, was there anything they needed to know?” I could truthfully say, “I’ve broken my foot”.

The only long wait was to see the Casualty doctor who would decide what should be done. Again, he asked: “Apart from your MS is there anything I need to know?” “Isn’t having MS enough?” I responded.

The thing is, it is enough. Too much some days. I have MS, I fell off my bike, I unintentionally kicked a large item of furniture. I have broken my foot. Enough.

Relentless

Today I woke with the phrase “time marches on inexorably” in my head. ‘Inexorably’ is a great word.  I looked it up as I wanted to be sure of its definition. In the old days I would have got my dictionary off the shelf but now it is simpler for me to google it on my phone. Time may march (or, in my case, shuffle and stumble) inexorably on but not everything changes.

Every day my iPhone alarm goes off at 8am, 2pm and 8pm to remind me to take meds. Every Sunday it sounds at 6.30pm for me to restock my meds dockets. Every day I struggle to remember to eat. Every time I go anywhere I chant my memory mantra – “keys, money, mobile”. Every time I put my bicycle away in the garage I forget to take the battery off and bring it indoors to recharge so have to go back for it. Every day I drop something.

What I dropped today was myself. Well, myself and my bike fell. I had set out to cycle to the cemetery where my parents are buried. Perhaps I wanted to go there because it’s Remembrance Day. Perhaps I wanted to place the beautiful small stone I had found in my pocket on my dad’s tombstone (a Jewish custom – google it!). Perhaps the cemetery simply provided a manageable destination to head for rather than sitting on the sofa all day.

Whatever the reason, I intended getting to the cemetery for the traditional two minute silence on Remembrance Day. Except I didn’t leave early enough so I paused on my journey at a nearby memorial for soldiers. Having observed the silence with suitable reverence I continued on my cycle ride.

I visited my parents’ graves. I placed my stones (and a charming dropped flower head I had found at the cemetery entrance). I set off to cycle back home taking a different route just for the fun of it. I travelled using a mixture of pedal assist and throttle with a tiny bit of non-assisted pedalling just to see if I could do it. I didn’t have to stop too often to rest. I felt good. Calm. Even a little bit fit.

And then I fell. I can only remember falling off a bicycle once before. It was a very windy day and I was literally blown off my bike, embarrassingly next to a bus stop with a queue of commuters. I’m not sure why I fell this time. I was navigating my way through a half barrier on a cycle path. It was muddy. There were wet leaves on the path. And stones. With a normal bike I might have been able to regain my balance when the wheels slipped and avoid dropping to the ground. This bike is heavy. When it slips it is hard to keep upright.

I fell hard. It hurt. My left knee banged the stony ground. I think I hit my head but at least I had a bike helmet on. A couple of cyclists I had recently passed on the path came up and asked if I was ok as did a woman walking and then another woman stopped on her bike. To each enquiry as to if I was alright I said “I don’t know. Give me a minute.” Then “I think I’ll just sit here for a moment.” I knew I was sitting on the muddy path. But I didn’t care. I needed some time.

Time wasn’t marching inexorably on at that moment. This was different. Normally when I fall over, I take a moment to check – Am I ok? Can I get up? Can I walk? Recently a friend at the disabled living gym I attend had a bad fall and hit her head against the treadmill I was using. There was blood and shock. The next morning, the physio phoned me to check I was ok as she was aware it had been a disturbing situation for us all

This fall wasn’t so bad. After a few minutes I was ready to get up. To check my bike was ok. To review my banged knee. Just a graze

The lovely woman cyclist wouldn’t leave until she had seen that I could cycle again. We chatted and I discovered her daughter is currently studying at Hull University (where I did my BA). I can’t remember what her subject is but that lapse of memory is not unusual for me. I managed to get my bike chain back on – it had come off in the fall. I got on the bike. I set off cycling. I got home in time to have my 2pm meds.

I don’t know what the damage will be tomorrow. For now I have another bruise on my thigh (right next to one I acquired in a trip/fall with Jemima). It’s not pretty. Hopefully that’s the worst of it. Time will tell.

OUCH!

There seem to be too many ouch points in my life with MS. Many of them are not physical pain. Recently there’s been

• the fish food fail - my flatmate was away and, in typical MS fashion, I put a tiny bit of feed in the lid of the fish food container and then, instead of tipping that little portion of granules in the lid held in my left hand into the tank, I tipped the whole container held in my right hand. It was horrible. There were fatalities. My flatmate was ostensibly forgiving;

• the falling fails – the most dramatic was one I tweeted about. Jemima and I fell in a tangle in the new venue for the show we were in. That was an ouch of physical pain. My bruises were spectacular like this on my thigh

• the oil cap drop – I was topping up the oil in my car and dropped the cap. It got caught somewhere in the engine and I couldn’t retrieve it. I was in danger of being late for a roleplay job so I drove the short distance to the venue. After the job which finished mid afternoon, I phoned the AA because I couldn’t risk driving further without an oil cap. The very nice man came, reassured me it was not the most stupid thing to have done, shone a torch, saw the oil cap and managed to reach the ledge it was balanced on and replaced it;

• the scripts that make no sense leading me to query is it my mind or is it poor writing?

I’m tired. I’m very tired. I look at my diary and it’s full. But only for a couple of weeks or is that three… I don’t know any more. I don’t quite know where I am or what I’m doing. I’m suffering.

And I miss MyMan. I miss that person to share my life with. He said on the phone recently, because we still talk (occasionally, not like the phone calls every evening after 8pm meds unless we were together)… Anyway he said: “that’s who I am”. He was talking about going to the gym and cycling and I’m not sure I gave that enough weight.

If that’s who he is, does that mean he’s found himself? And have I lost myself along the way. Maybe I have.

Today of all days is not a day to be lost. Today has been Yom Kippur, the Jewish Day of Atonement. In years gone past, I would have gone to the synagogue. We would all have gone. The whole family. We would all have fasted. The full 26 hours (yes, 26 not 24). Now there’s just me. My brother and sister both have families of their own. I’ve not eaten a meal today, just had fluids to take my meds with and stop MS collapse and I have done some contemplation.

But I do not class myself as a practising Jew nowadays. I probably haven’t done so for years. I am Jewish. I always will be. As a vegetarian I don’t have to consider whether or not I would stick to kashrut (best known as the Jewish dietary laws that include not eating pig, shellfish, any animal that doesn’t have cloven hooves, rodents, reptiles, amphibians, not mixing meat and fish nor meat and dairy at the same sitting – that is not kosher). I have never eaten bacon, pork, shrimp, prawns etc and, if I wasn’t vegetarian, I would be unlikely to start now.

I grew up in a kosher household – for the most part that is, from a food perspective, including having separate crockery, cutlery, saucepans, washing up bowls and tea towels for ‘meat’ and ‘milk/dairy’ or ‘parve’ (neutral) dishes. Meat was bought from a kosher butcher. Friday night was special every week with lighting of the candles, blessings and a meal. Similarly, most festivals were observed. You might say religiously.

However, my mother used to say you can fast anywhere and on this, the holiest of days in the Jewish calendar – the Sabbath of Sabbaths – she professed not to mind if we couldn’t be with her and my dad. I think she would have minded if I hadn’t observed Yom Kippur at all. Hadn’t gone to synagogue. Hadn’t said the Al Chet (confession of sins repeated several times throughout the Yom Kippur services). Hadn’t recited yizkor (a service of remembrance particularly for those for whom one or both parents have died). Today I didn’t. Ouch! That’s my conscience pricking me.

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

Glorious Twelfth

12 August was a Sunday this year. It was glorious. A friend of mine got married on Sunday. The venue is well known to me. CoombeLodge was often used as a venue for a roleplay job I do. I don’t think it’s used by that client any more. Almost every time I worked there, I would comment with colleagues that it would make a wonderful venue for a wedding. It has changed hands since I was last there and has been lovingly refurbished. It is a beautiful venue for a wedding.

One actress/friend I worked with there used to say it would make a great location for a promenade production of ‘Rebecca’ and I would be an ideal Mrs Danvers.  I am lucky that I have played some excellent characters – Cathy Earnshaw and Catherine Linton in ‘Wuthering Heights’ was a dream job; Lady Macbeth should have been a dream but the company made it a bit of a nightmare; I have had several one-woman plays written especially for me and I’m thinking of restaging one later this year. But to be Mrs Danvers in ‘Rebecca’.

I have always liked the 1940 film. If you haven’t read Du Maurier’s book, do so. It is excellent. I haven’t seen a stage adaptation of ‘Rebecca’ but would like to – from onstage of course and Mrs Danvers is the role for me. Yes, that would be good.

Meanwhile back to 12 August. The Glorious Twelfth has long marked the opening of the hunting season in England. Specifically hunting by shooting grouse. Now I hunt most days/weeks. That is I hunt for jobs. I’m freelance/self employed so I rarely know where or when the next job will be, let alone what it will be. I hunt by chasing leads, scouring casting websites, ‘networking’.

Every social gathering is supposed to be a networking opportunity but when I am at a good friend’s wedding I don’t really think that way. Even though I had to deliver a reading (it went very well).

This year 12 August was a Sunday and it is an offence to shoot grouse on a Sunday in England, Wales or Northern Ireland. So the Glorious Twelfth had to start on 13^th - http://www.bbc.co.uk/news/uk-scotland-19226263 On 13th I was mostly recovering from the wedding and ‘performing’ the previous day in Birmingham at a friend’s special lunch. On 14^th, I went to London to do a demo recording for a big corporate voice job. On Wednesday, I had a phone interview for a short film job. (Today I was told I’d got the gig but I have turned it down – it’s low paid and in York, sometimes sensible me overrides driven job hunter me.)

Now I’m preparing for performing this evening. Just three more nights of a show I’m in once a week throughout June, July and August. We have been receiving excellent audience responses and great reviews.

This nearly makes up for receiving a less than enthusiastic response to my new showreel from a film company: “we would say that your showreel's production really fails to highlight your obvious strengths as an actress that has an impressive CV and is currently employed.” I disagree with this assessment of the showreel. But then, of course, I would. However, I will confine my disagreement. I’m not a grouse. I do want to be shot. Shot in a film. It would be glorious.

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.