What the future holds...

who knows?! 
You may have long term plans. I don’t. I never have.

I very rarely plan anything ahead. I don’t have a personal five day let alone five year plan.

There are exceptions. My diary is now littered with hospital appointments. I am hosting a Cake Break in aid of the MS Society in exactly three weeks’ time. This forward planning is unusual.

My normal response to invites to future events I would like to attend is either

a) a regretful ‘No, I am already booked for…’ or

b) a tentative ‘Yes, depending on work. But I am currently available’.

For me, work comes first. By work I mean acting commitments. Over the years, friends and family have had to get used to me dropping them in favour of jobs. I missed my first cousin’s wedding because of a theatre tour. I only have two first cousins. My family were not at all impressed.

In 2005, I agreed to go on a going-abroad-holiday with a good friend. I rarely have holidays. I am reluctant to book ahead for things in case a job comes up. It is a common phenomenon for an actor to get a great job as soon as a holiday flight has been paid for.

This holiday was to mainland Greece to join in the celebrations for my friend’s Greek friend’s wedding. My friend wanted to go for at least 10 days. I only had 7 before a good theatre job started rehearsals.

I suggested my friend could stay for longer than me but she felt it would be simpler to book us on the same flights and accommodation so we just went for a week. It was a fabulous holiday. We saw amazing places like Epidaurus, Mycenae and Olympia.

In fact all of my (very few, all bdx) going-abroad-holidays have been excellent. They have often been booked at very short notice because I rarely commit to things in advance. Many castings come at a matter of days or hours notice. Jobs get cancelled or rescheduled. There are no certainties.

In 2000, I went on a Nile cruise with my then boyfriend booked less than two weeks before. It was a fabulous holiday.

The Greece trip was my last going-abroad-holiday. That’s nearly six years ago.

I’d quite like another and now that I’m not injecting it would be a lot easier. Although I don’t want to travel alone, at least I wouldn’t have to consider potential complications of taking needles and non-oral drugs onto a plane.

I don’t know what my future holds but a holiday would be good.

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!

A Vague Memory of Today

Today has been a good day. A sunny day. A day with friends. I have enjoyed today.

Tomorrow I may have forgotten today.

At one point today the conversation turned to something that I knew related to something I had done recently. I didn’t remember what. In fact now I don’t remember the conversation.

This is how it is. Occasionally it bothers me but mostly nowadays I can shrug and accept that short term memory lapses are common to many people. I would like to remember how today started but I’m honestly not sure.

Thinking back I know I was running late this morning. I used to be a very punctual person. Always ready and waiting. Early in fact. As an actor, I abide by the concept that if you are not five minutes early, you are ten minutes late. My friends were coming to pick me up at quarter to 12. They are renowned for being late. However, recently they have started being on time for things. It’s very confusing!

Just before 11.45 there was a knock at the door. I let my BFF in. It didn’t take me long to put food in a cool bag, grab my friend’s birthday present, find my sunglasses, put on a light jacket, deliberate over what to wear on my feet. I was the one who was late. My friends waited for me. They’ve become very patient with me and learned that I am not the same person I once was.

So, before I forget, today we went to Waterperry Gardens. BFF’s husband set up an easter egg hunt. He hid little cards with eggs printed on them. There were small, medium and one large card. The idea was find the cards and then claim your egg. There were a couple of drawbacks to holding this private easter egg hunt in a public place. Firstly, other groups of people had the same idea and their eggs were hid around the place too. Secondly, BFF’s husband hid the cards over a huge area of the gardens/fields. I am not experienced in such things but I suspect easter egg hunts are more manageable and less time consuming when confined to a single building/garden

I walked over to the nearest possible bit. I was already tired out by the time I got there. I had a little look around and then BFF’s husband gave me a hint as to where a couple of the cards were. I found one and considered that was enough for me.

After a long time (it was an epic easter egg hunt) we sat in the sun (sun shy folk sat in the shade) and had a huge picnic. As is usually the case, most of us had brought more food than we could each possibly eat. We played some games. We sat and chatted. Some of us looked round the garden centre. Some of the children climbed trees. Some of the adults joined them.

It was a good day. It may not be a hugely memorable day but, with me, even the most memorable days are easily forgotten.

The Bottom Line

Front to back I don’t look slack but side to side I’m a little bit wide.

Recently, my BFF asked her husband for an honest opinion on whether her bottom has got too big. She’s not a hugely self-conscious woman although did surprise me today by saying that she is having a personal shopper session on Thursday. It's part of the lead up to starting a new job. Perhaps I shouldn’t have been surprised. At the time, I was helping her choose frames for some new glasses. Part of the same lead up.

I’m quite good at doing this and have provided the same assistance to several other friends. That’s why she asked me. It’s all to do with the size of the head, shape of the eyes and where the frames go in relation to eyebrows.

Back to the bottom line. The husband replied that BFF’s bottom definitely is bigger than when they first met. She knew that. She has been getting rid of unwanted/unneeded clothes. She tried on some loved ones only to find they don’t fit any more.

I don’t think BFF is at all big bottomed. I do think I am.

A couple of years ago I went to a commercial casting. It was for a photo campaign for Courage beer. I was pencilled for it (this is when a casting director effectively options an actor whilst waiting for the client decision) but I didn’t get the job. The character was a woman with a big bottom wearing a tight fitting dress. The implied question to her boyfriend is: Does my bum look big in this? The resulting poster ad was banned. See this: Courage beer advertisement banned

I have also frequently done a roleplay job for the MOD Harassment Investigating Officer training programme. As part of their assessment, the candidates have to hold interviews with two complainants and the respondents. One of the complainants I play has had numerous comments made about her backside. She admits to having a big bottom.

Like many people, I would like to lose some weight. When I was last weighed at the hospital they told me my weight in kg. I’m more of a pounds and ounces girl. I went on to a conversion site to work out what I weigh and then, in an idle moment, I looked myself up on the Body Mass Index. Supposedly BMI range 18 to 25 is ‘normal’. I was 26.7 (overweight).

People usually tell me I don’t need to lose any weight. I am smaller than the UK average dress size. In some ways, I am quite slim. I’ve always had a relatively small waist. I am between hour glass and pear shaped with a generous chest (ample boobage) and my tummy is certainly more gently rounded than when I was a bright young thing.

Enough of this. It’s becoming like an internet dating site description. Not that I would know what that's like of course. (I do really.)

I’m not sure what the husband’s reply should have been. I suspect, despite BFF’s desire for honesty, he could have gone with ‘It looks good to me. What do you think?’ The bottom line is my BFF now believes that her bum is too big. And if she thinks hers is, where does that leave me?

15 Things I Drop

I used to have a firm grasp of things. At least I think I did. Now my brain is like scrambled eggs and not lovely fresh, golden yolked, free range scrambled eggs. No, my brain is more like the insipid pale, slightly watery scrambled eggs you get in dodgy budget hotels. Lots of things seem to drop from my scrambled eggs.

I'm sure it’s the scrambled eggs for brains that also means stuff drops from my fingers. Often and repeatedly. It’s not my fault. That gravity thing is very strong, who am I to compete?

In no particular order, 15 things I drop are:

1. KEYS – house keys, car keys, the key to the mystery of the universe (okay, not the last one, I’m keeping hold of that).

2. FILOFAX – yes, I still use a filofax. When I drop it, papers often fall out. One of these might be my drugs list (see 3).

3. PILLS – I take a lot of meds. At the moment, my 8am meds are two capsules and one tablet, when I am back on the drug trial study (hopefully next week if today’s blood test shows my Pacmans have increased) it will be three capsules and the tablet; at 2pm it’s just two capsules; at 8pm I take two capsules and two tablets. On top of that there are the ‘as necessary’ mega strong painkillers plus Paracetamol and Ibuprofen. Drop any or all of those and I apply the Five second rule

4. PEN – remember them? I use a pen most days. Dropping an ink pen in bed can be very messy.

5. WALKING STICK – sometimes it’s not that I drop it, more that it has a life of its own and falls. This is pretty much a daily occurrence.

6. MAKE UP – when putting on mascara, dropping it can result in particularly attractive pseudo camouflage effects on the face.

7. SHAMPOO BOTTLE – this is not a huge problem in the shower except that the resulting excess of bubbles would rival any children’s party and, when it hits the bath, it’s loud.

8. MOBILE PHONE – the worst drop was into the snow. I applied the five second rule. Not that I ate my mobile but I picked it up and it worked – at first. I don’t own that mobile any more. Water damage.

9. EARRINGS – often these are actually studs which are very hard to find on the floor. They bounce.

10. LISTS – I make lists for all sorts of things. To-do lists, shopping lists, phone lists, repeated reminder lists. I may lose a list or drop a list. I sometimes don’t realise I’ve done either of these things and certainly can’t find it once it’s gone.

11. REBIF CAPSULE/NEEDLE – I don’t inject now so this is no longer an issue but I did once drop a needle and couldn’t find it at first. I used to inject in my bedroom so the thought of a random needle being on the floor was worrying. I found it later that night. Fortunately not by treading on it.

12. WATER BOTTLE – I am supposed to drink a lot of water. I have a lot of water bottles in lots of different rooms and two in my car. When I drop them at least it’s only water that spills.

13. CUTLERY – it’s annoying when I drop this particularly if there is yummy food on it. Especially if it’s the last mouthful of that food. Somehow it doesn’t seem right to apply the five second rule to food on cutlery.

14. DRINKING GLASS – smashing. Literally.

15. TOAST – not only does it land butter side down but the last time I dropped toast it had marmalade on. It landed marmalade side down. I was outside – does the five second rule still apply?

I ate it.

What’s the worst thing you’ve ever dropped?

Bathroom thoughts

I’m a shower girl. Always have been. A long soak in a bath is all very well but nowadays it could be tricky for me.

I have a shower bench across my bath which would have to be removed. I would have to feel strong enough to be able to get in and out of the bath. (After being in hot/warm water for a long time, my balance is sometimes particularly dodgy.)

Anyway, I don’t think a bath really gets you clean. It uses a lot of water and you wallow there amid the soap and your own dirt. With a shower the water is fresh and you use less of it. I have a shower every morning.

I love my bathroom. It’s not huge. It doesn’t have room for a chair. There’s a sink, a toilet, a cupboard, a bath with a shower over it. Nothing special you might think. But I think my bathroom is particularly conducive to creativity, dreaming and play.

I have a watery, beach theme to the room. There are pictures of dolphins, boats, beach, whale and palm tree. A visiting friend somewhat doubtfully commented that it has a 'strong' theme.

Indeed it does. It’s a theme I find inspirational.

I come up with all sorts of ideas whilst I’m having my morning shower. In my head, I write.

Unfortunately, I suffer from very poor short term memory. I didn’t use to. It’s a MS symptom that particularly annoys me.

I have no idea how many great bathroom thoughts have escaped me within minutes or seconds of completing my ablutions.

I do know one of my thoughts was that it would be really good to have a waterproof dictaphone type apparatus in the shower. When I’m out and about I often record thoughts as voice memos on my iPhone. I want to be able to do that in the bathroom too.

I do keep a pen and post-it pad in there. But even remembering my thoughts between having them in the shower and getting out of it is not a certainty.

It is possible to buy waterproof or, more accurately, water resistant radios for the bathroom/shower. I want a waterproof recorder.

Packing it in

My BFF has recently come back from a walking tour in Scotland. She was telling me last night how easy she finds it to be highly organised about and on holidays. She carries minimal luggage and happily travels alone (in this instance leaving her husband at home).

I, on the other hand, recently packed the hugest bag on wheels I own to be away for less than a week. Yet I always say to myself whenever I go out - "mobile, keys, money". As long as I have those three things (money really means wallet containing credit cards and cash), I figure I can do anything.

Following my BFF's example, I have resisted packing another big bag  for tonight's one night away.

It's a Monday so previously I would have had to have considered my injection kit. Now I don't. I have meds for today and tomorrow. I have a change of clothes, toothbrush, toothpaste, book, phone charger, 'mobile, keys, money' and, most importantly, presents for family members I am going to see. It's all packed in a small backpack. (Well, one of the presents isn't - the plant in a vaseful of water might object to being squashed into a backpack.)

I have enough baggage as it is without carrying more.

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.

If it's Tuesday it must be...

There have been many times in my working life when I have been in a different town each day. I used to remember things and know where I was going to be every day. If asked, I could usually reel off the forthcoming destinations without looking at a list or my filofax. I am still essentially a pen/pencil and paper girl. I write appointments down. I put them on the calendar on my iPhone. I keep lists. Nowadays, I have to look at these otherwise I often have no idea where I’m going to be tomorrow, where I was yesterday, sometimes even where I am today.

This week I know where I am and I’m not at home. It’s easy. I’m in one city, although over the weekend I travelled to three different places. The third of those was where I am now. I’m in the same hotel for four nights, working in the same location each day. The job is for people who’ve used me many times over the last few years. They are lovely, well organised, professional and friendly. Today for the first time I told one of them that I have multiple sclerosis.

She had made the totally excusable and common assumption that I had a walking stick because I have something wrong with my leg. She wanted me to know there was a different (shorter) route in the building I could use. I don’t always let people see me with a stick when I am working. I am not ‘out’ as a MSer professionally. Indeed, on this job, I was quite discreet about my stick, not using it around the building, but I had to use it to get there as my balance has been a bit off recently and it was quite a long walk. Delightfully, when I explained to her that I have MS but don’t usually tell people, she took the very positive stance that it made no difference and was nobody’s business but mine.

This is how it should be and today this is how it was. I wish I could be sure everyone would have the same non-prejudicial mindset.

One thing I do know is that I don't know where I am next Tuesday.  I'll have to look it up in my filofax.

Well coordinated

Today (now yesterday) my masseuse commented that my knickers matched my walking stick. Let me explain.

a) I have had regular massages since suffering a work related shoulder injury many years ago. I wrenched something. It hurt. A lot.

b) Unusually for me, these particular knickers are patterned with red cherries.

c) I own a variety of patterned walking sticks. This is one of two recent bargain buys from Timpsons. It is bizarre how excited I now get about buying new walking sticks. Who’d have thought someone my age would get so much pleasure from a pretty stick! Not a euphemism.

I often coordinate the colours of my clothing and, to a certain extent, accessories – earrings, bags, walking sticks. This probably makes me sound far more fashion conscious than I could ever pretend to be.

Loss of coordination was one of the first symptoms to affect me when I suffered the MS relapse that led to my diagnosis. I don’t remember what I was wearing when I went into hospital (in an ambulance) but I bet it wasn’t in any way coordinated. I do remember I couldn’t write properly with my left hand. I am left hand dominant. Left-handed to you and me.

I had also started dropping things. I was already using a stick due to footdrop, balance and coordination difficulties when walking - and when standing or bending down. Sitting seemed to be ok but that doesn’t take a huge amount of coordination.

None of this is unusual for someone with MS but when you don’t know you have MS and these difficulties are accompanied by visual disturbances, extreme tiredness (fatigue), strange numbness/tingling in limbs and crushing pain round your midriff then the loss of coordination is disturbing. It was the midriff pain that landed me in hospital, It moved up to my chest and the out of hours doctor told me I had to phone 999. Best thing I did. Once in hospital I had the raft of tests that led to my diagnosis.

On diagnosis, I was told by the hospital MS Specialist Nurse that the crushing midriff pain, which felt like a far-too-tight twisting belt, is known as the MS Hug. I think of a hug as a pleasant thing. This wasn’t, and still isn’t, at all pleasant.

One of the problems with all my symptoms is that they didn’t/don’t feel coordinated. To a lay person like me, it’s like having a whole jumble of stuff wrong. So yesterday it was good to be told that one part of me was coordinated. My knickers matched my walking stick. I was well coordinated. Very important, I feel, to look your best... in case you get run over by a bus.

Borderline normal

I have sort of become used to blood tests. It seems that whenever I go to the hospital they take blood, and I go often. I sometimes also have to have blood tests at my GP surgery to supplement the ones at the hospital. I dread bumping into one of the MS Specialist Nurses in the supermarket in case they say ‘Oh, by the way, we just need some more blood’ as I head for the check-out.

I recently started taking part in a research study for a new medicine. More blood tests.

Yesterday I was phoned by one of the study doctors to say I needed to come in to the hospital for another blood test. I was only there last week. She had got the blood test results. She said there was nothing for me to worry about. She was the one doing the worrying. She said it was her job to worry and repeated, several times, that I didn’t have to worry. She did. I didn’t – I’m obedient like that.

I dutifully went to the hospital this afternoon for my blood test. I asked the doctor why they needed another blood test, what was wrong with my blood count from last week’s? He explained about my white blood cells. I nearly understood it all.

The MS Trials Nurse told me that I had only been ‘borderline normal’ at the start of the study. Now there has been a drop in one element of my white blood cell count. I need more neutrophils. Put very simply, mainly because that’s how I understand it, neutrophils gobble up infections. I think they are like Pacmans scooting round the maze of the body. I’ve had a virus – flu which turned into a bacterial infection. My little Pacmans have had their work cut out and are depleted in numbers.

I currently aspire to be borderline normal again. Hopefully I’ll exceed that and become normal. I suspect friends may say that’s impossible. We can all dream, can’t we?

Eleanor Roosevelt had it right

I’ve always been a tidy person. Extremely tidy. Well organised and neat. Not necessarily meticulously clean – I’ve never regularly got out the furniture polish or dusted every surface on a daily basis. Who am I trying to kid? I have never done that on a weekly basis – but home and work spaces, even now, are usually well-ordered.

I once stayed in digs with a family whose mother was obsessive about cleaning. She took it to the extent that I didn’t feel hugely comfortable in her scrubbed, polished, spick and span house, It didn’t feel like a home. I can’t be sure but I suspect she was the type of woman who ironed her pristine socks and knickers.

There is nothing particularly wrong with ironing underwear. I don’t do it myself. I rarely iron anything. I usually neatly place damp clothes on an airer or hanger so that gravity helps straighten out the wrinkles. I shop carefully, often crushing clothes in my hand to see if they crease easily. Yes, maybe I sometimes look a tiny bit crumpled.

Nowadays I have a good excuse for my lapses in domestic goddess capability. I tire easily. I recently had to ask my best friend to change my bed linen because I knew I wasn’t up to doing it myself. This best friend may figure largely in this blog. Perhaps I should refer to her as my BFF, oh dear, I have slipped into a whole new vernacular.

To go back to my lapses. It’s a service to others really. Years ago my BFF (see, it’s slipped in there) bought me a desk calendar pad with a different apt and/or amusing quote from famous people (many of whose names I recognise) for each day. For 19 August it was Eleanor Roosevelt:

“The only advantage of not being too good a housekeeper is that your guests are so pleased to feel how very much better they are.”

Eleanor had it right. Look at me, my clothes, my home, (my health?) and glow with smug pride at your own brilliance.

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.

Sorry, who are you?

I have many personas. There is the public me, the professional me, the personal me. There are probably other mes. Some of them are known by others, some are understood. Most of them are not. Even I struggle to understand me.

I heard about a case of a woman who has part of her brain missing. She doesn't recognise herself. When she looks in a mirror she knows it must be her because she is standing there looking but she can't remember that is what she looks like. In photographs she sees a woman and can be told that it is her but she doesn't know without being told. She lives her life not really knowing who she is.

I heard about this woman not long after my diagnosis with relapsing remitting multiple sclerosis. I noted down: "I know this is me but I don't recognise myself in this new format. My points of reference don't quite compute. I still need to process who I am now."

Perhaps this is not so unusual. Do you know who you are right now?