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.

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.

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

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!"

Talking to Myself

I’ve been feeling a bit sorry for myself. What a waste of a sunny day. I used to sing this Carpenters song at castings (when asked for a song not just for the hell of it because that would be stupid):

Rain Days and Mondays

Now, of course, I can’t run and find the one who loves me, because He doesn’t. Funny that. Not. Especially when I look back at my blog post from September last year: Maybe MS Truth: I cain't say No

And it’s not raining or Monday today. However, I often talk to myself. And I sometimes feel old. I talk to objects and animals too. Sometimes I talk to them to disguise that I’m really talking to myself. Oh dear, perhaps I have really gone mad. Except I think I’ve always done that talking to myself/objects/animals thing.

I don’t think it’s particularly self-motivational though that can be a side effect. I was trying to describe some of my MS symptoms to a friend recently and I kept confusing the words ‘symptoms’ and ‘side effects’. Sometimes it’s hard to know which is which when you take lots of drugs. Perhaps this blog, this form of talking to myself, is a symptom of my MS. I didn’t write it before. Perhaps it’s a side effect of the condition as without MS it would have no rhyme nor reason.

Sometimes I talk to myself in public. I probably shouldn't. Sometimes I do it in public on social networking sites even though people wouldn't necessarily know. Sometimes I forget it's effectively myself I'm talking to when I retweet or comment on status update posts - a by-product of having more than one Twitter and Facebook identity. I'll try not to comment on this blog post or re-tweet the post announcing it on Twitter using one of my other Twitter identities although, of course, you are welcome to do so. Confused? Think how I feel!

Just to be clear – when Talking to Myself, I do not think of this Eminem song even though some of the lyrics might seem apt: Eminem Feat. Kobe - Talkin' 2 Myself lyrics

You’re lying to yourself, you’re slowly dying, you’re denying
Your health is declining with your self esteem, you’re crying out for help

Right enough of this – the sun is shining and I need to get out. Yesterday I watched The Artist at the cinema. It was beautiful and moving. Today I might go to see The Best Exotic Marigold Hotel. Or Rubber Gloves as I’ve come to think of it. Get those marigolds on.

Pip pip cheerio

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

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

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

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

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

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

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

Introducing Jemima

To you it might look like a (quite fancy) walker.  To me it is Jemima and she is my new friend.  I quite often give things names – my flatmate has 10 fish/shrimp in a bowl acquired from MyMan (MyExMan… ExMyMan… MyHeWhoHasToFindHimselfMan… oh you know… Him). It was the bowl not all the fish who came from Him. Four out of the five original fish survive and their numbers have been supplemented by additional bowlmates. All of them have names, mostly given by me. But I wouldn’t have given my new walker a name if it wasn’t for fellow MSers telling me of other people who have named theirs, e.g. Myrtle (that’s the name of a walker not her MSer owner). And someone else told me it/she will become a friend.

Jemima is already a friend.  I can walk further and more steadily whilst gently holding her handles.  She has a seat for those times when I have walked too far/long (mainly because it is so easy walking with her).  She has a front bag where I can store a folded stick, water bottle, food, shopping… She has an optional shelf which is mainly for use indoors as, when the shelf is in place, the seat is not usable and Jemima cannot be folded. She folds really easily. And she fits perfectly in the boot of my car. Like a jigsaw piece slotting into place.

Okay Jemima is not the most attractive addition to my front room but when she is a rest indoors I can gaze at her and ponder how strange it is for me – still young-ish, active-ish – to be glad to own another mobility aid.  I am soooo lucky.  No really, that wasn’t sarcastic. I am lucky.

I live in a city that has not just one but several MS Specialist Nurses.  There is a hospital with a fabulous Neurology Department.  I have use of a specialist Disabled Living gym along with regular contact with specialist Physios who provide me with such things as my new bath bench and the fabulous Jemima.

Why Jemima? To be honest I’m not sure why this name popped into my head but I suspect it is to do with Chitty Chitty Bang Bang.  Remember the film/show/?  The car flew. The young girl in it was called Jemima.  I want to fly.  I wasn’t about to call a walker Truly Scrumptious. That would be silly!

Who do you think you are?

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

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

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

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

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

Maxwell's Silver Hammer

This song has been going round my head - Maxwell's Silver Hammer

“In 1994, McCartney said that the song merely epitomises the downfalls of life, being "my analogy for when something goes wrong out of the blue, as it so often does, as I was beginning to find out at that time in my life. I wanted something symbolic of that, so to me it was some fictitious character called Maxwell with a silver hammer. I don't know why it was silver, it just sounded better than Maxwell's hammer. It was needed for scanning. We still use that expression now when something unexpected happens.” Times are bad when I start quoting Wikipedia in my blog posts but at the moment times are bad.

Completely out of the blue, MyMan did the whole “it’s not you, it’s me” speech.  He doesn’t know if he can/should ‘do’ relationships. He ‘cares’ about me a lot – this from a man who has always said he loves me and can see us together in our 70s. It was a blow to the head. And much worse than a few days previously when I fell badly and banged the back of my head hard on the floor.

My GP gave me a hospital sheet she printed off: ‘Advice after a head injury’. I had the accident on a Tuesday. I saw her on the Thursday. Already I had contravened six out of the seven pieces of general advice. The only reason I hadn’t broken the seventh is because I don’t do contact sports.

There does not seem to be a similar advice sheet for what to do after your boyfriend unexpectedly decides he is not sure about whether he should be in a relationship. I think I have to go along with the general piece of head injury advice under the heading ‘Long-term problems’: “Most patients recover quickly from their accident and experience no long-term problems.”

I am in a holding pattern. The relationship may not be without hope. I love MyMan. He is going through a difficult time. I have only just come out of a period when I thought I was going into relapse. He says that I still tick all the boxes for him. It’s not me, it’s him. My head hurts.

Return of the Waterproof Mascara

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

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

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

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

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

The C word

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

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

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

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

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

I cain't say No

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

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

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

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

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

The times they are a-changin’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Five minutes early or ten minutes late

When I refer to my late mother it seems wrong. She was never late.

My mother was a stickler for punctuality. As a consequence she was usually early for things. So was my father. I think it was at my father’s funeral though it could have been hers that the congregation was gathered waiting for the coffin. Someone joked that my mother would have been appalled (and probably left) as the funeral was running late.

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

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

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

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

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

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

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

Keeping count

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

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

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

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

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

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

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

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