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! 

Senseless

I cycled into town today to meet fellow MSSY group members for a drink (that's a defytheMonSter* feat in itself) and I wondered how much time do we spend not seeing, not hearing, not smelling, not feeling, and, yes, not tasting... I must remember to keep my mouth closed when cycling - I'm vegetarian and flies don't taste good**!

On Talulah***, I picked up wonderful blends of smells, scents, aromas and indeed some proper pongs - ewww. For the most part, I felt alive, connected. 

The fact that I could hardly walk when I'd parked up Talulah (and dropped keys, water bottle and helmet - twice each) didn't detract from the fact that I had gone out. I took that bold step of being in public. 

I have been doubting myself a lot recently. I feel more alone than normal. I love the summer. I love that sunshine brings people outside. I love that I see and chat to my neighbours. People are more likely to eat outdoors in the sunshine and the food tastes better. But, as empty weeks of summer stretch ahead, I want to be loved. I want to be respected. I want to be liked. All three would be great. Can you hear me? Or is this senseless?

* I have started this hashtag on twitter in an attempt to focus on the positive - there is always something, every day, that is an achievement

** I do keep my mouth closed and didn’t swallow any flies but it’s funny

*** Talulah is my electric bicycle - she was an expensive but fabulous addition to my life

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

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.

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.

That way madness lies

My mother was a psychiatrist. I remember one ward in her hospital where I felt if you weren’t mad before you stayed, you would be by the time you were supposed to leave. There was always someone crying or shouting. The doors were locked (I think), handles turned the wrong way round.

I sometimes worked in Occupational Therapy there. I remember, during a cookery session, asking a patient who was stirring a bowl of yumminess “What are you making?” “Oh, I’m not doing any cooking today.” Her reply was accompanied by an uncertain smile and bewildered eyes. She kept stirring with the wooden spoon and later produced some excellent biscuits.  

Recently, I received a letter from my GP surgery: “Having a long-term health condition or chronic illness, such as diabetes, pain, or a heart or lung condition, to name just a few, can really impact upon your life…” – no kidding! It offered me “a FREE programme, choosing Self Management for Life, that can help you understand how your condition impacts on your life, your job or even your relationships with family, and how managing these effects can help you take more control of your life and your health… excellent opportunity… runs over seven weekly session, with each session lasting three hours…”

I won’t be taking up the offer. I fear that way madness lies and I’m not afraid often.

I went through a stress management Mindfulness Wellbeing course at a time when I felt no stress but was very sad about my DX. And I was probably still grieving for my father who had died the year before. I felt braver doing that course than jumping out of an airplane (which I also did!). Mindfulness practice seemed to lead to me being more distracted than normal. Everything was thrown off kilter by having to attend the sessions when I was still only just adjusting to a regular routine of taking meds.

At the same time I was having counselling. I would be asked if the Mindfulness course helped. I couldn’t be sure one way or another. I found it very hard to be told I was depressed. It was even harder to admit it to myself. Positively depressing in fact. Or should that be negatively depressing.

Not long after DX, a consultant put forward the possibility that I had the capacity for clinical depression. This was totally alien to me and my BFF who was with me at the time. We rejected the potential as I was ‘normally’ such a positive person. Of course, ‘normal’ no longer existed.

Later, when the idea of being depressed was suggested by my MS specialist nurse, I accepted it.

At the time, I hated being dictated to by routine – meds, injections (I was still on Rebif), the stress reduction clinic, counselling sessions – I didn’t recognise the person with a regular pattern to her days/weeks. I am glad I had admitted to my GP that I wasn’t coping. That I needed help. Needed anti-depressants.

The latter work though I do think it’s strange that, with serotonin levels raised by the anti-depressants, it became harder to write. Perhaps some writers are miserable because they write better when depressed. Is writing therapy for or a symptom of depression? Oh, that way madness lies.

P.S. I googled 'That way madness lies' to check the quote source. For some not-entirely-KingLear viewing, you can watch this: Slings and Arrows - Season 3, Episode 3: That Way Madness Lies

One Royal Wedding does not a Summer make

It’s the UK. It’s Spring. (I know it’s officially British Summer Time in that the clocks went forward on 27 March but climate-wise I think it’s Spring.) I recently saw a commercial about Springing into Summer. It’s a bit early for that. Especially when the weather here is so variable. And when it’s still only April.

I wonder how many days of summer there’ll be this year.

I am a huge fan of sunny, summer days. I can spend all day outside reading. I probably get through more books in the summer than at any other time.

I can’t focus on books when I am in rehearsal, learning lines has to come first and sometimes the words of a book can crowd out a script. When lines learning, I will sleep with my script on the bed next to me in the hope that the words will somehow creep off the page into my head whilst I sleep.

I am good at learning lines and roleplay briefs. I find it easy. Or perhaps I used to. I remember one summer learning the whole of Lady Macbeth for a production that was to be rehearsed over the course of a week or so and then toured for many weeks after that. I wanted to be off the book (lines learnt) by the time rehearsals started because it was going to be a tall order to get them all crammed in otherwise. I did it. It was a bit of a nightmare job but I think I was a good Lady M.

I used to be a reader in bed at night but over the years that has become very intermittent. I do sometimes now listen to audio books which I never used to enjoy. I still prefer to see the words in print as I have a visual connection with things which is probably stronger than my aural one. And I’m a voice over artist!

The remaining constant in my reading pattern is the sunshine devouring of books and, to some extent, magazines.

I missed summer 2009 because of my dx coming in June. I missed a lot that year. I think there was sunshine. People would visit me in hospital wearing summer clothes and the sun out of the ward window beautifully lit up the neighbouring cemetery. Nothing like knowing where you might be going.

I don’t exactly remember what happened to last year’s summer. Perhaps we didn’t really have one in the sense of lazy summer days. Perhaps I was too depressed to notice.

Now I want to experience every moment of summer I can. I want to be outside. I want to read whilst lazing in the sun. I want to have picnics, bbqs (vegetarian for me), strolls by rivers and canals, visits to the seaside. I feel like I’m owed a summer and I intend to have one. Once Spring is over.

(Whilst we’re waiting - Here Comes the Sun)

Here you come again

I was struck by this song on the radio yesterday. I hadn’t heard it for years. Whilst I know many people have sung it, somehow the Dolly Parton version is the one that sticks with me.

Here you come again

It’s not the message of the emotional impact one person can have over another that connected with me but the refrain: “here you come again and here I go”.

I quite often feel like that.

I had a sudden mood drop this afternoon. I don’t know why. The unpredictability of my condition is often bewildering but it’s a long time since I’ve felt so inexplicably blue.

I had done a roleplay job today. I was playing a positive, upbeat teacher. The roleplay consists of a 20 minute interview with the person being assessed who, for the meeting, is in the position of a new headteacher. I do the roleplay four times a day with different applicants. They are all applying to become trainee headteachers, working towards the mandatory National Professional Qualification for Headteachers.

For the last one, as usual, I started the meeting smiling and enthusiastic. By the end I was crushed. The assessor noted that I was a different person going out than the one who had come in and recognised that this was in reaction to how the meeting had been conducted. It was obvious why my mood had changed. What was strange was that whilst the ‘headteacher’ had probably seen the mood change, he persisted in adopting a telling, unnecessarily hyper-critical stance that left my poor character demoralised and confused. The assessor almost certainly found a wide range of development points to feed back to the prospective trainee headteacher.

If I knew what brought on my mood drop in real life perhaps I could prevent it happening.

However, it may well be that this email message from the MS Specialist Trials Nurse initiated the change:

“Your blood results appeared today. Unfortunatley they only processed the electrolyte part of the test not the full blood count. I assume that this is because it took longer than expected to get to the lab due to Easter. (Even though I checked and they said that there was a normal service good friday and sat - humph!!)

“So the bottom line is I need to check again. Because of all the festivities this week I would rather wait until early next week….

“…Sorry to ask you again but I need to know that those pesky lymphocytes are behaving.”

Yes, there is a typo and lack of capitalisation. I can rise above that. But still not to know if my Pacmans are up to scratch and to need another blood test makes me sigh.

My mood drop didn’t last too long but, when it came, I was gone.

I am back and will write again when I’m not so tired. Oooh, fatigue…. that’s a whole other story!

Nothing to achieve and nowhere to go

I was always a very positive person – your quintessential optimist. I approached my MSDX (I think that’s short for Multiple Sclerosis diagnosis – educational isn’t this?!) with my normal, good natured acceptance. Doctors kept saying to me ‘this is serious’ with some disbelief at my calm reaction.

I told friends and family ‘I don’t want anyone weeping and wailing. At least, not in front of me.’ This may have been selfish but at the time of diagnosis I don’t think I could have dealt with their emotions. I did cry. Late at sleepless night in the hospital. Then at any time of day and night. I called it water running down my face. It wasn’t like crying. The tears would just fall – no sobbing, no sound, no real connection to emotion.

It took a long time for me to accept I was depressed. At first I thought I was sad, down, understandably so.  My father had died the year before, my mother three years before that, I had just been diagnosed with a major life-long neurological condition. I think I had good reason to be sad. I didn’t want to be depressed.

At my first appointment with one of the consultant neurologists, she told me I had the capacity to be clinically depressed. My best friend, who was at the consultation with me, and I dismissed this as ridiculous, it was completely out of character.

But eventually I had to tell my GP that I was not coping. When I say eventually, it was actually just a few months after dx. I was referred to the practice’s clinical psychologist. In turn, I was referred to a counsellor. My wonderful MS Specialist Nurse referred me to the hospital’s Clinical Neuropsychologist who enrolled me on his mindfulness based stress reduction course.

Just a year after dx I started the 8 week course. Most of the practice was based on meditation and, of course, on mindfulness. It was interesting. Some of it felt irrelevant – coping with family, children, spouse, work stress (external stress factors don’t really figure on my radar). Some of it I continue to use – 3 minute breathing space, guided yoga meditation. ‘This is how it is’ comes from the mindfulness awareness course.

‘Nothing to achieve and nowhere to go’ comes from the guided meditations. With this blog, I have nothing to achieve and nowhere to go. Except I do. This blog is an achievement in itself. I am glad to be writing. There may be no destination for now but on any journey there can be many places to visit. I’m seeing where this one takes me.

PS I am not depressed. I completed the course. Life carried on much the same. Then at a MS nurse led clinic consultation, my fabulous specialist nurse suggested that I would benefit from going onto antidepressants. I admitted I was depressed. I started on Citalopram. I became myself again.