Taboo to you - BOO! I'm back!

It has been a ridiculously long time since I blogged and I am not going to try to explain why. Not least because I'm not sure why. Today I had a conversation with a dear friend who has a blog I didn't know about before (laraknowlden.blogspot.co.uk). Her most recent post included such truth and honesty it has inspired me to write here too.  This might be a diversion exercise as I should really be writing episode running scripts for my new online TV show http://www.wawow.co.uk!

Lara says: "In some ways depression and also the menopause are more taboo subjects to discuss than cancer." As I blur the lines between anonymity and a public face, it can be hard to be honest. To tell the truth, the whole truth and nothing but the truth. There are so many taboos.

I am more honest about my multiple sclerosis than I used to be. It holds less fear for me to say I have MS when in professional situations. I more frequently take my stick with me when auditioning or meeting people who might be employers. Of course, this might just be that walking without it has become more difficult as I fall over. A lot. Don't worry, the ground always breaks my fall.

I expect fewer people know that I am in menopause and some of my regular meds are for (probably MS related) depression than know that I have MS. Yes, I take anti-depressants to keep the depression at bay. This makes me think of my need to attend continence advisory clinics. I have to remind myself that it is not with an 'incontinence' nurse. I seek continence, both bladder and bowel. Too much information? Is that the biggest taboo?

I confess here that not only am I having tests related to a mega period-like bleed despite being in menopause and on HRT (partly to protect my bone density). And I take the aforesaid antidepressants. And I have MS. I have also had several (more than 2 less than 10) 'accidents' recently. Is incontinence such a taboo that even medics refer to it as accidents with me? The accidents have meant I have to do more washing - the increase in washing detergent use alone must be part of what my DLA pays for. And a few weeks ago, I had to clean up the driving seat of the car I had only just bought. I didn't have to buy the car because of that 'accident'. In fact I am thankful the driver who rear-ended my previous car causing it to be written off, didn't also cause me to have an 'accident' of that nature. That would have been embarrassing. The driver works for an insurance company. I think that’s a bit embarrassing.

So, what are the taboos? As an honest person, how much about my life can I or should I talk about, openly and honestly? I am online dating in the hope of meeting someone with whom I can have a relationship. Is that a taboo too? What are taboos and what are examples of them? At least, I don't fart in public... oh, hang on, yes I do! 

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.

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

Where do I go from here?

One of the worst things to lose with the diminished cognition of my messy scrambled eggs is my sense of direction. I have toured in the UK for years, decades and was always good at navigation. My parents or more likely my dad taught me and my siblings how to map read. When on holiday, we would sometimes be entrusted with choosing the route to go – straightforward or picture-skew (picturesque is not a particularly English sounding word and skew is sometimes how our routes took us).

Now I know my thalamus may be shrinking - http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1264 but it seems harsh that I cannot remember the simplest of what-should-be-familiar routes. Driving back from our friends’ house on Christmas Day I had to ask MyMan which way to go, repeatedly. I use my satnav more than anyone should. Or is this a case of me just being more normal now? When I bemoan my faulty memory, a friend tells me that before I was exceptional – knew too much, remembered everything (not true) – and now I am just like a normal person. If only. Or rather, I am glad ‘normal’ people do not have to endure what I go through.

Today I saw my GP. She is excellent. Great communication skills. Thorough and dependable, except she works part-time so it can be tricky getting an appointment. Today we went through my 3 point list – moving from Oxybutynin patches to pills, looking at dosage of anti-depressants, and reviewing my Gapapentin in light of a new annoying symptom (stinging soles of the feet).

She knows I have to write things down. Without making me feel awkward or stupid, she jotted down our plan of action – it was ‘ours’ not ‘hers’. The progression steps for each drug. The way forward. Except… I look at the list now and cannot see what I am supposed to be doing with my anti-depressants. I made the next appointment (three weeks’ time) whilst at the surgery as my GP suggested so I wouldn’t forget. I know we are going to review how things are going with the changes. I went to the pharmacy with the prescription and have new Oxybutynin tablets and new dosage Citalopram meds. I have the plan for the Oxybutynin. I have the suggestion for changing Gabapentin. But where are the instructions for the anti-depressants? I hope I am right in thinking I just jump from 20mg to 30mg daily.

Sometimes going on a new journey can be exciting. I quite like driving and not deciding in advance which way to turn. Making it up as you go along. At least I always used to know whether I would need to turn right or left to get near to where I wanted to be.

Nowadays, I have no idea. Everything seems to have gone skew-whiff and it's not pretty. Where do I go from here?

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?

Driving Miss Daisy

I passed my driving test six weeks after my 17^th birthday. I think I first drove a car on my 16^th birthday – just forwards and backwards on my parents’ (very short) drive. Then my brother occasionally took me driving on an abandoned airfield before it was legal for me to be on a public road as a learner driver. As a teenager, driving represented freedom to me. It still does.

I was so determined to pass that driving test and was fortunate to have a good driving instructor. He not only taught me how to drive, he taught me how to pass the test. These two things might be the same but sometimes, looking at other road users, I do wonder.

So I have had a full driving licence for many more years than I didn’t have one. With dx I found out lots of legal stuff including that I had to notify DVLA of my condition. I dutifully did so and was hugely upset to receive a letter saying my licence was being withdrawn. It barely softened the blow to know it would be replaced with a short period driving licence which runs for 3 years.

There are two awful things about this short period licence. Firstly, I hate the fact that, along with the new paper licence, they have provided me with a new photocard but kept the same very old photo. I don’t look like that person any more. I have current photos on my Blue Badge card, on my bus pass, even on my Cinema Exhibitors’ Association card – this latter is fantastic and enables me and a friend to see a film and only have to pay for one ticket, the friend does have to carry my popcorn though.

Secondly, and worse, my short period driving licence expires in exactly 18 months time. According to their letter, DVLA will send me forms to reapply for my driving licence three months before it expires. I see no reason why it won’t be renewed and am resigned to the probability of getting another short period licence. I really hope I can persuade them to let me have an updated photo though.

Anyway, I was looking at the licence today because it fell out of my bag. The thought of having to apply to renew it every three years for the rest of my life reminded me of something.

Long bdx, several years ago, I was asked about my health in an audition. It was for a very physical show and the company needed to know whether an actor was suddenly going to announce or suffer from a back or other problem that might limit their ability to do the job. I declared that I was incredibly healthy and virtually never ill. It was true at the time.

Things have changed. As I looked at myself hooked up to a 24hr ECG monitor as part of my screening to go onto a new drug trial study, I thought I will never be able to say that again.

Then the idea popped into my head that there might be a cure for MS in the future. I could be a spritely old lady leaping around on stage. I don't want to be a Miss Daisy being driven around because no insurance company will touch me, DVLA won't give me a licence or MS takes away my freedom.  I've been a driving force most of my life. I intend to continue to be one.