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.

After the party

This pic is via a friend on Facebook. It’s appropriate that I should get it today as Ronnie is only just a friend but I met her at my real friend’s hen party weekend. I think we all came away from the weekend looking a lot better than this.

I am not hugely comfortable in social gatherings where I don’t know many people. At this weekend I knew one person (the bride-to-be) well and one (a solicitor who works at a firm where I used to temp sometimes) vaguely.

Overall it felt like a big undertaking for me to go to the hen weekend. It was at a hotel near Cardiff. 

I don’t live near Cardiff. I broke my journey there at ExMyMan’s house. It’s not the first time I’ve stayed there since we split up. Fortunately, we are still on friendly terms but it is a bit odd being there and sleeping in a separate bed from him. Then on the Saturday night, of the hen party group, I was the only one to be sleeping in a room on my own. Originally I would have been sharing with another good friend who was supposed to be coming too but logistics of travel and young children meant she had to cry off. Another reason for me staying at ExMyMan’s the night before. I sometimes get really tired driving long distances.

Overall I was being very sensible. I knew in advance that I would almost certainly take part in the daytime activities and evening meal then retire to my bed whilst the others could go out clubbing in Cardiff. I had a lovely day. A reasonable drive to the hotel, arriving in time for lunch and then spa activities for the afternoon. I had a massage and was told to take things easy afterwards. No exercise. A great excuse not even to go for a swim in the pool. Because of the effect on my MS, I’m not supposed to swim on my own now and by that point the other members of the group had done all the swimming they wanted to.

There was a wedding party at the hotel. Lots of beautifully dressed people quaffing champagne and eating canapes. Several of us hen party women walked past their function room in our swimming costumes with white toweling gowns on top – I suggested we could have gone in and said hello at least but somehow that didn’t seem to be a popular idea. In general, we were not too outrageously raucous at our evening meal. The penis shaped drinking straws seemed a bit out of place for our vaguely mature group. We had plenty of giggles over the How-well-do-you-know-the-bride-to-be quiz and donned our Hen party sashes and badges over our Royal Blue dress code outfits, The bride-to-be had been instructed the colour for the evening was red or green and she looked fab in her red dress – a great contrast to our blues. Here is me in mine: 

This morning, having let the rest of our hen party group go drinking and dancing in town, I was up bright eyed and fresh faced with no hangover. It was a lovely morning and beautiful gardens.

I was able to witness some wedding party guests doing the walk of shame. I didn’t take photos of them.

However, there was considerable other evidence of it having been a good night for the wedding guests. Plenty of abandoned glasses and bottles, some incongruously containing soft drinks:

I’m pretty sure the TV had not been turned round by guests but you can’t be absolutely certain what a wedding party will have got up to especially when you see what some people had left behind.

A pair of shoes, a top hat, a tails coat, a cravat, a wheelchair…. What? A wheelchair! Who forgets their wheelchair at the end of the night?

By comparison, our hen party group were all pretty chirpy but, at breakfast, I was able to hear plenty of tales about what had happened the night before. I can’t tell you them because what happens on hen party weekend, stays on hen party weekend. I’m sure Ronnie will post photos on Facebook soon. Meanwhile my aftermath is a complacent smile at having been well behaved and perhaps a glass of wine to toast staying sober at and after the party.

Don't push me

I seem to be in a bit of a negative frame of mind. Another blog post starting with a “don’t”. This time it’s Don't push me cos I'm close to the edge. The lyrics aren’t exactly right but the refrain rings true with me.

Yet on Friday evening I will be positive. I will accept offers. I will start scenes with my body language and dialogue open and affirmative. I am performing in Kevin Tomlinson’s Charity Olympic Improv Show – do come along!

http://www.pegasustheatre.org.uk/shows/kepow-theatres-charity-olympic-improv-show/

At the heart of this sort of Improv is honest storytelling, spontaneity, being in the moment. As an MSer I try to live in the here and now. I try to accept things as they are. At the moment it just feels a little like I’m on a tightrope and might fall off at any moment. I felt like that even before I read Funky Mango’s Musings today: http://funkymangosmusings.blogspot.co.uk/2012/07/tightrope-spoonie.html

Tomorrow I will go to the hospital for a regular clinic appointment. I will be asked about how my MS is, about my symptoms, about how I am. I will have to confess to doing too much, to not sleeping well, to being in the position again where I don’t feel hungry so I often forget to eat. In many ways, I’m doing well but in very many others I’m not. I’m on the edge. I’m wobbly. My balance, or lack of it, is a nightmare. Please don’t push me.

Don't tell me you're sorry

There are lots of things I don't want to hear. I don't want to hear that a good friend can't attend a big social occasion I thought we were going to enjoy together. I don't want to hear that I didn't get a job (acting) that I thought I was perfect for. I don't want to hear that a couple I thought would be together forever have split up.

I don't want to hear it but in the past week I have. Then yesterday one of the worst - "oh! I'm sorry" accompanied by an earnest pitying look.

All I'd done to provoke this was to respond to a query about whether I was using Jemima because of some leg injury by saying matter-of-factly "No, I have multiple sclerosis."

I know the sorry/pity was probably well meant. The fact that it came from a fellow actor made it worse. It contained a judgement. Especially when accompanied by a quiet shock "I didn't know, you looked so well". What did she mean I 'looked' so well? I still do. I look fabulous (no comment, please).

Perhaps I should print out this Guardian article: http://m.guardian.co.uk/lifeandstyle/2012/apr/18/10-things-not-say-when-ill?cat=lifeandstyle&type=article and give it to anyone tempted to fall into this pity trap.

If I'd said I'd had some dire accident or my flat had burned to the ground then perhaps I wouldn't mind someone saying 'I'm sorry'. I remember being slightly surprised when I told a friend that my mum had died that she didn't say anything at all about it let alone the almost obligatory 'I'm sorry'.

Yes, I have MS. No, I'm not happy about it. Yes, we can talk about it and I'll try to answer any questions you may have. No, I can't do some of the things I used to do. Yes, I'm still working so do please give me a job. No, I don't need pity. As newly diagnosed Jack Osborne has said: 'don't tell me what I can or cannot do'. That includes the unsaid as well as the said. I will hear you.

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.

Funky Mango's Musings: The MS Trust hits the airwaves!

Rather than blog myself, I invite you to please read this post on FunkyMango's blog, not least because I have devoted huge amounts of energy to MS Society UK recently and need to redress the balance:
Funky Mango's Musings: The MS Trust hits the airwaves!: The excellent MS Trust has been selected to give a Radio 4 appeal this Sunday. As well as bringing in much-needed donations, the appea...

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

Not really here

I have had a tough time recently. I’m tired and sad. But people who saw me at the MS Society UK reception on Wednesday would not have known. I am good at pretending. I can act almost anything. On Wednesday, at The Royal Institution in London, I acted being positive and upbeat. I gave my speech on the subject of relationships when you have MS to great acclaim. Apparently I was “inspirational”. The energy needed to give a good impression during MS Awareness Week has left me depleted. I feel completely out of things like I’m not really here and yet I am still here.

So rather than saying what I might like to I give you my speech from Wednesday. It wasn’t exactly these words as I gave it a good performance with some references to what other people had said but here it is:

I am Ruth Curtis and I have relapsing remitting multiple sclerosis

I was diagnosed in 2009 although I will have had MS for probably 15 or 20 years longer than that.

I was quite lucky that my diagnosis came relatively quickly but not early. People are usually diagnosed in their 20s or 30s and I am considerably older but it only took about 10 days from being taken into hospital in an ambulance and having every test under the sun to decide that I didn’t have tumours in my brain or an infection but in fact have MS, the best out of those three diagnoses. Puzzled by “the best”? Well, I’m still alive.

I’m coming up to my third anniversary of knowing that I have MS and living with it can be extremely challenging but on the other hand it’s led me to take on challenges that I wouldn’t otherwise have done.

I was shocked to discover that one of the stats that has come out of the MS Society’s recent survey is that I in 5 people, who were surveyed, think that disabled people need to accept they can’t have the same opportunities in life as others do.

Well I don’t accept that. I refuse. MS may have an impact on me and I am reminded every single day that I have this lifelong incurable condition – the alarm on my mobile goes off at 8am, 2pm and 8pm to remind me to take the meds I need - but that doesn’t mean I can’t do amazing things:-

Since diagnosis, I’ve fallen out of an airplane – some people call it doing a tandem sky dive; I have had a gliding lesson; I have ridden a segway (great fun); and perhaps most importantly for me the MS Society has introduced me to Cake Breaks.

I held my first Cake Break in May last year, and it was at that first one that I met Shaun, my last boyfriend.

I was single before I had diagnosis and I’m single again now but that’s not the fault of MS. That’s the way life is sometimes. It’s the same for all of us.

I’ve always tried to be very careful about how I tell people I have MS. I want to tell people that matter to me as soon as possible because it’s hard work. It is hard work having this condition and I was lucky that Shaun knew from the word go that I have it and he still wanted to be with me.

I like to tell people face to face so that they can ask as many questions as they like and I try to explain how it’s different for every individual. With Shaun it was easy. He was brought to cake break by a friend of mine and when I met him on my doorstep he already knew that I have MS. I didn’t have to tell him. We’re not together now but that’s just the way with relationships sometimes, regardless of MS.

Anyway, I’m still fighting. I’m going to hold my next Cake Break in just a few weeks time (do ask me later how you can donate!) and then, a week later, I’m going to walk down the side of the hospital, some people call it doing an abseil. I’ve never done one before – aarrgh. I might meet someone special either on my doorstep or travelling 100 feet down a building holding on to a rope. I’m truly scared. But, whatever happens, everyone I meet on those occasions will know that I have MS. And I’m fighting back. Thank you.

Yes, that was my name at the start. But I'm still Toots and I'll always try to tell MS Truth here. If you read the MS Society UK report you can see me in there. That’s all for now. I can’t write more. I’m not really here.

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

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

Dead to the world

I’m tired. I’m often tired. When I’m fatigued I’m pretty much dead to the world. I’m not fatigued today. Today I am wearing PJs. I haven’t had a shower or got dressed. I haven’t been outside. But I have got out of bed. I have done a bit of organising for All 4 Cake - http://beatms.mssociety.org.uk/netcommunity/toots
I have designed and ordered some car door magnets - 

And a sign for the window - 

And I have dealt with death today - . 

It was ‘only’ a fish but there have been a few fish fatalities and it’s not even my fish tank. I didn’t really have to do very much dealing. I just removed the body from the tank using a pair of tongs and flushed it down the toilet. I then watched the (animated) film ‘Flushed Away’. Pure coincidence.

There have been other bodies that I didn’t do anything with – a bird, a mouse

And there are always the plants I simply put in the compost section of the recycling point

I’ve been driving around a bit recently and seen a lot of road kill. You’ll be pleased to know I didn’t stop and take photos. I didn’t even keep count but there were badgers, rabbits, foxes and at least one pheasant. I didn’t kill any of them.

I do sometimes wonder what happens to all those poor battered corpses. Does nature take care of them or is it somebody’s job to go round clearing up the, often human-induced, mess? If it is somebody’s job then I’d like to add it to the list of jobs I’m glad I don’t do. They are important jobs. Unlike what I do. I remember stressing over a difficult project years ago and a friend gave me a good reality check. “It’s not like you do anything important,” she said, “not like cleaning the roads or emptying the rubbish bins.” A thought to remember when I still have to work though I feel dead to the world.

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?

Life in a goldfish bowl

My flatmate has a new fish tank. He still has the bio-orb, or fishbowl as I like to call it. He claims it’s nothing like a bowl but I differ – what do you think? 

Okay yes, it’s more of an orb than a bowl but still… The goldfish bowl used to belong to Him (or strictly speaking His son) when he was still MyMan. It never had goldfish in it being for more pesky tropical pisces.  MyMan wanted to get rid of it and my flatmate wanted a fish tank – perfect synchronism.

My flatmate has recently upgraded to this new (bigger capacity) tank. It looks really sleek and modern. I like it a lot. Along with populating the tank with fish from the bowl, my flatmate bought a couple of new red platys, white sand and stylish plants.

There has been much activity, not all of it good. One of the new fish died, two young’uns disappeared, new ones were born. I feel like I’ve been a (not-so roving) fish tank reporter posting updates on Twitter. 

However, I neglected reporting duties to go to the cinema a couple of times in the last few days and, in further synchronism, I watched films that I feel draw upon modern day concepts of living in a fish bowl – observed and to some extent manipulated by those who watch.

I saw The Hunger Games on Sunday without having read any of the books. Although I vaguely knew what to expect, I was intrigued and engaged by the film and its story and characters. I recommend you see it no matter how old/young you are.

Then last night I had a free ticket to a preview screening of The Cabin in the Woods. Again there was the Truman Show-esque directing with constant manipulation, surveillance and broadcasting of people’s lives but this time I felt laughter was forced, deliberate clichés became unnatural constraints. I am so glad I hadn’t paid. I may be in a minority as many people are responding very positively to The Cabin in the Woods and its horror laced with humour.

Perhaps it is too close to the manipulations of reality TV for me.  Although you would think that was more the case with The Hunger Games (if you’ve read or seen it) which doesn’t lead to wholescale Armageddon.  I will say no more for fear of being accused of spoilers in both films.

I’m not keen on the increase in so-called reality TV with its programmes that I feel are exploitative of human emotion and failure rather than celebratory despite often purporting to be the latter. I am wary of how much we are watched with CCTV almost everywhere. I don’t want to live my life in a goldfish bowl even though I contribute to this by involvement in social media such as Twitter, Facebook… even this blog. At least there may be someone watching if I die.

"Good morning, and in case I don't see ya, good afternoon, good evening and good night!"

Busy busy busy

I've not been a good blogger recently. In fact, I've been very bad.

I have often thought of things to say then forgotten to write them down.

Ideas come and go in the blink of an eyelid or snag of Jemima on a pesky kerb.

I have been very busy - this is not an excuse, a boast or a plea for help. Or perhaps it is all three. I have lost count of how many miles I have driven since my last blog post but I've been to London, Leeds, Oxford, London, Oxford, Nottingham, Oxford, London, Oxford.... yes, I live in Oxford!

Somewhere along the way I have been involved in radio interviews on behalf of the MS Society UK about the not 100% nice NICE decision on Gilenya. It's nice for me that they have agreed to prescribe the Wonder Drug but there are criteria to be met and I don't know if I will fall through a loophole. I am hoping not as I have been taking it for a year and have no intention of ever self-injecting again. That would not be nice.

I would rather not be on any DMD than go through the half hour hell of injecting three times a week. Apologies if Copaxone, Rebif etc etc work for you. I think my tummy has only recently recovered from the Rebif injection site side effects and I stopped using it a year ago!

So NICE have made their decision. As arranged by the press office of the MS Society, I recorded an interview for local radio (from my mobile phone outside a jolly* London pub**) saying what it means to me and how the Wonder Drug has changed my life, which it has. I can come and go without thinking about autoinjector, needles, freezer for cool bag, let alone the time it took to actually do the injection.

Some MSers may not take any meds but I do and my morning cocktail is easily supplemented by an additional capsule of Gilenya.

My second interview was for BBCRadio5 Live. That one I did live from a local radio station. Bizarrely, a friend heard it and emailed me: 

"Put my car radio on as I set off about mind ago (sic) .Heard a distinctive voice and thought that's our [Toots]. Missed the beginning of your interview, but caught most of it. You argued your case coherently and eloquently. Thought you would like to know"

Another friend has donated to (one of) my fundraising ventures. His comment is: "You are SO the female John Noakes. All power to you." - how lovely of therm both. (If you don't know who John Noakes is you probably didn't watch Blue Peter on BBC1 in the same era as me)

All the comments and affirmations are truly heart warming and as I carry my mantle of campaigner, fundraiser and idiot - whoops, daredevil - I am glad to be appreciated.

It is spring.  Time for things to blossom.

I have posted pictures to the MS Trust I also have MS project

I am forging ahead and if you want to sit in despair then please don't bother me - I'm too busy!

*busy

** Urban Bar in Tower Hamlets