Friday, 23 September 2016

The ongoing myth of MS: an open letter to Holby City

I don't watch all that much TV, and when I do my viewing tends to be a guilty pleasure. I don't have the stamina to stay up late to watch the latest cult series, or the organisational skills to commit myself to following whatever the current Netflix talking point is.


In the evening, when I've managed to get the children to bed, and feed myself, all I am really up to is something unchallenging and familiar - the televisual equivalent of a milky drink and some comfy slippers. On a Tuesday night, Holby City fits the bill. For the uninitiated, Holby City is a drama set in an NHS hospital - the same hospital as the A&E department depicted in Casualty. All the doctors and nurses at Holby City work together, socialise together, frequently operate on each other, have inappropriate relationships with each other. Most operations will involve the patient suddenly developing 'a bleed', necessitating them being shocked back to life with a defibrillator - almost always successfully.


Like many of my colleagues in the NHS (when they admit it, after a few drinks...) I have followed Holby City for many years. The plots are often preposterous, but I like to think it's all fairly tongue in cheek, and I like to laugh at it and get some satisfaction from pointing out to my non-NHS husband the plotlines that would never happen in real life, or would result in dismissal of most of the staff due to gross misconduct. However, the programme does have 4.5 million weekly viewers and so it has an important role in raising awareness - it's recently successfully tackled bipolar disorder and skin cancer.


Last week, though, Holby City really let me down. Since I was diagnosed with MS, I've had to manage the expectations of the people around me as to what MS is, and how treatment and prognosis of the disease has changed over the years. There are so many myths about MS and it is really tiring having to dispel them. I have often thought that it would be great if one of the major characters in Holby City developed MS - so that people could see that normal life can continue, that there is hope after a diagnosis. That you're not written-off.


In last Tuesday's episode, nurse Adrian Fletcher developed paralysis in his legs after being stabbed by a patient (yes, another one of those preposterous storylines...). His immediate reaction was to assume that he had MS. And then to say that this would mean ending up in a wheelchair, and to death. At this point I expected the other characters in the scene (doctors) to tell him that most people with MS don't end up in a wheelchair, that if his paralysis was due to MS it would likely be temporary, that there are many new drug treatments available for MS that can help people to live a normal life for as long as possible... but no. Instead the other characters looked ashen-faced and glum. At one point, Nurse Fletcher got a colleague to agree to look after his children for him, 'when' he was no longer able to.


Great. I've spent the last year trying to be positive - because my consultant has told me to - but after watching that episode the doubts came creeping back. Maybe I'm kidding myself. Maybe I'm too cowardly to admit the truth. Maybe I should make arrangements for the ongoing care of my children. And I felt really despondent and hopeless.


And then I felt angry. Angry because I feel as though the scriptwriters used something I am dealing with every day as a cheap way to build suspense, without considering the real impact this storyline has had on me and my state of mind. And here's a calculation: MS may be rare, affecting one in 800 people, but that means that of the 4.5 million people who watch Holby City there are likely to be about 5 and a half thousand viewers with MS. I wonder if they're all as angry as me. Or maybe they just feel more hopeless.


Holby City had a great chance to raise awareness of how MS really is and educate people that it isn't the death (or even life) sentence it once was - sadly that chance has been thrown away.


P.S. If you're wondering, Nurse Fletcher didn't have MS. Phew. So that'll save the props department the cost of a wheelchair.

Friday, 20 May 2016

Keeping my mind on the right track

The last few weeks have been a bit difficult, physically and mentally.

My walking’s not been all that great and I’ve been so, so tired. At the same time, we’ve been having some building work done on our house so the whole place is full of dust and clutter – and although I’m far from a clean-freak I find the dirt and mess makes me feel really depressed, especially when I don’t have the energy to clear up. My mood has been pretty low, probably the lowest it’s been since a couple of months after my diagnosis. That might be because MS is becoming a part of the reality of my life, and the post-diagnosis adrenaline rush has dissipated.

Mental lows aren’t new for me. Before I was diagnosed with MS, I had a course of cognitive behavioural therapy (CBT) to deal with my health anxiety. Health anxiety that stemmed – oh, the irony - from my fear that I had MS. Let’s not get into that convoluted story again, you can read about it here, if you like. The CBT process looks like this:




Esther Emanuel, (2016), Cognitive Behaviour Therapy [ONLINE]. Available at:http://www.estheremanuel.com/cognitive-behaviour-therapy/ [Accessed 24 April 2016] 

It’s self-led, and involves you examining your thoughts and realising how they impact on your feelings and behaviour, challenging them and breaking out of negative cycles. CBT was really helpful for me, and in hindsight I think the techniques I absorbed – almost subconsciously – from the experience are what prevented me losing my mind altogether when I was going through my MS diagnosis last year.

However, maintaining your state of mind when you have a long-term, progressive illness is a continual process, like creosoting the fence or getting the boiler serviced (can you tell I’m trying to reconcile myself with middle age?). I feel that I’ve been encouraged to focus on the physical side of what I can do to look after myself – to be active, exercise and watch my diet - but those are things that I don’t want to do when I feel low, so keeping my mental state on track is the most important thing I need to do. Otherwise I just don’t care about my physical state and I’m into a downward spiral I can’t get out of, where I feel physically bad, which makes me feel mentally bad, which makes me feel physically bad, and on and on ad infinitum.




The link between my mental and my physical well-being is the reason I think the new Thought Sort tool that Shift.ms have added to their website is so great.

You can use the tool to go through a process of examining any negative thoughts you are having, enabling you to stand back and think about why you are having them and how realistic they are. I’ve found it really helpful to get me back on track recently.

I’d started having some negative thoughts about my diagnosis, worrying that I might develop an aggressive form of MS, which might not respond to my medication. I went into the Thought Sort tool and described my feelings, and the tool responded by asking me to elaborate on the thinking behind my low mood, and encouraging me to consider the reasons for that thinking. It then asked me to examine whether the thoughts I was having might not be true. Finally, it asked me to replace the negative thought with a new thought. It sounds simple, but was very effective, helping me to reorient my thinking in a realistic way which lifted my mood.

The thoughts you record are kept for you so you can go back and re-read them later, and start to learn more about your thought patterns and how they affect your mood. It’s a helpful addition to your mental armour and helps you to be on-guard for changes in your mental state.

There are also ‘Mood Boosters’ – simple ways to feel a bit happier when you’re struggling. Simple things that really work, like listening to your favourite music, reaching out to a friend, or getting outside. The things we all know we should make the time to do but which get forgotten or pushed aside. Being reminded to do them has given me the impetus and the excuse to stick on a favourite tune and send my best friend a text just to say ‘hello’ – both of which brought some random happiness to my day.

 So the roller-coaster of MS continues, but right now the track I’m on is heading upwards. The sun is shining, and I’m feeling positive, and I have a tool to turn to when the track turns downwards again.

Sunday, 13 March 2016

A very useful resource

I know I keep going on and on about the loneliness associated with an MS diagnosis, but it is possibly worse than the symptoms I have (which are constant, but thankfully relatively minor). In fact, I think it is the worst thing I have to contend with.

I don't know anyone else with MS. There are ways to meet people with MS, so some of this is down to my own lack of energy and initiative. One way is via the Shift.ms website set up as a social network for people who are newly diagnosed. One day, I keep telling myself, I'll take the plunge and go to one of their get-togethers. It might take me a while though. In the meantime, I've gone on web fora for people with MS, and I've got a Twitter account where I follow a lot of people with MS who tweet entertainingly and educationally about their experiences. This is all really useful but there's still a gap there. It's seeing these people in the flesh, actually hearing them speak, that makes them real.

There is another resource that has been really helpful to me, in getting the information I need as well as helping me feel that little bit less alone. Shift.ms have a project called 'MS Reporters'. They train people with MS to ask questions, on video, of experts - the questions are submitted via their website by other people with MS. You can find out more here: http://shift.ms/msreporters/


There are a lot of videos and I would encourage anyone with MS to go and have a look at them – whatever your age or diagnosis. Here’s a video about managing fatigue that I found particularly helpful:



And another one on MS research. We all know that there's a lot of conflicting information about breakthroughs in MS treatment. This video is sensible and realistic but also optimistic about the prospects:




When you have MS, especially when you are first diagnosed but also - I imagine - as the disease progresses and treatments evolve, you have questions by the skip-load. Some are unanswerable, and some have many different and conflicting answers. Most you don't think of when you're in a consultation with your consultant or MS nurse - damn you, cog fog! Some you don't think of at all. MS Reporters has been massively helpful to me. Sometimes it's hard to take in large amounts of written information, but having that information delivered within a video helps me to absorb it. 

The other thing that has been really helpful to me has been seeing real live people with MS talking to real live experts. The Reporters look like me, and they're going through what I'm going through - it seems trite but that really has helped me to feel so much less alone, like I'm the only one going through this, like my MS makes me somehow weird and different. They are normal, and so am I. We all have to deal with this irritating disease and we all have lots of questions - but we can get to the answers together.


Monday, 4 January 2016

The unmitigated joy of Teatime Themetime

There is a soundtrack to my life, and much as I'd like to pretend that I challenge myself with constantly new experiences it is one that comforts me deeply with its routine.

In the morning, Monday to Saturday, I wake to the Today programme on Radio 4. After some groggy shouting at politicians I disagree with, I make my way downstairs where the digital radio in the kitchen is tuned to BBC 6 Music. On Mondays and Tuesdays, I don't go into the office and so it's there all day in the background, a presence that fools me into thinking that I'm not all alone.

On these days, everything builds up to 3.35pm, a time when I am not interruptible under any circumstances - for it is Teatime Themetime. Teatime Themetime is a quiz  during the Radcliffe and Maconie show on 6 Music that is really rather simple but has become something of an obsession for me, and (despite his best intentions) my husband. Someone will send in the names of three songs and these will be played one after the other - there is a link between the songs that is not revealed. Listeners attempt to find the link - which could be something incredibly obvious, or something extremely obscure - and text or email it in. My goal every Monday and Tuesday is to get the answer right first and have my name read out on the radio, something that I've achieved about twice (which, given my almost religious fervour for entering every single week, makes my success rate about 0.01%...).

I've been wondering why I find Teatime Themetime so addictive, and I think there are a couple of reasons. Firstly, it allows me to feel that it's OK to be smug about my knowledge of obscure musical facts rather than a bit embarrassed given that it came about because I spent my teenage years reading the NME instead of meeting other people or learning about the real world.

There's another reason why Teatime Themetime appeals. Even though the MS hasn't physically isolated me from the world (yet) - I mean that it hasn't stopped me going to work or spending time with my friends - it's hard to overestimate how much it has isolated me on an emotional level, because untimately I have to face my fear of this disease alone. There is so much I have to keep to myself because revealing it all to anyone would be too much for them to take, so like an iceberg I only display the whitest, nicest bit at the top that's easy to get your head around. But when I listen to Teatime Themetime, it's trite to say it, but it feels good to be part of a joint enterprise - lots of other people trying to guess the answer like me. I don't think about the MS and - even better - my participation isn't in any way hindered by my leg getting weak, or my eyes going funny, or my feeling overwhelmed with fatigue.

It's a simple pleasure, and I have learnt to cling to those wherever I find them these days - for they are the best and most comforting of all.

Wednesday, 23 December 2015

Coming back to Christmas

When I was a child, Christmas was my favourite, favourite time of the year. In fact, the whole slow sweep from October into the 25th of December was joyful to me, gradually gathering momentum until The Big Day. I loved the presents, of course, but more than that there was something ineffable about the nights closing in, the hush of the days around the 25th, the way my family closed in on itself and into our private rituals that felt so sacred and special.

The moment I loved most of all - the actual second - was the first note of 'Once in Royal David's City' beginning the carol service from King's College, Cambridge at 3pm on Christmas Eve. My mum and I would be busy making stuffing or bread sauce, everyone was home, I felt at that moment so safe and sure of everything.

As I got older, of course, my feelings about Christmas changed. Father Christmas was sacrificed on the pyre of growing up, and my childish wonder was tempered by the cynicism that comes from experiencing the unfairnesses of adolescent life. Christmas was still special, right into my late twenties, but there was a counterpoint to the joy. There was, increasingly, something melancholy at the heart of the season - something I can't quite put my finger on. The closing of another year with all that entails. The inevitability of time passing and the time that can't be got back. The routines repeated without those who once were part of them. I spent Christmas on an emotional tightrope - The Snowman, that first note of Once In Royal David's City, any participation in a carol service all reduced me to embarrassed tears of happiness or sadness or somewhere in between.

Though there was still joy at the heart of Christmas, it was somehow sweetened and deepened by the contrast of the sadness that was woven into it. Then one year, on the 4th December, I had a phone call telling me that I had lesions in my brain suggestive of the early stages of MS and Christmas became imbued with very different emotions - horror, fear, and sadness. After that, it was a milestone - marking another year I'd managed not to be diagnosed with MS, but heralding a new year that might see my worst fears come true.

Since then I've tried so hard to feel the joy of Christmas again, but despite the happiness I feel at seeing my children's unbridled excitement and wonder I've just been going through the motions. I could never allow myself to feel unabated happiness again. This was not just at Christmas but all year round, but when celebration is mandated and all around are (supposedly) having the wonderfullest of times hiding a deep sadness becomes even more difficult.

And so to this year - the year that finally realised my fears. The year that ruined my life. A year I'll be happy to leave behind but that propels me into a future of even greater uncertainty. And how do I feel? Happier than I have done for years. Without fear hanging over me, I can finally allow myself the joy that's been suffocated by fear and anger. What's more, for the first time I truly realise what I have and how lucky I am. I think it's going to be a great Christmas.

Merry Christmas one and all, and a very Happy New Year. I'll leave you with my favourite Christmas song - one steeped in longing and pitched precariously between tipsy euphoria and frosty despair - a perfect soundtrack!



Monday, 23 November 2015

My love affair with music

Lauren Laverne has a feature on her BBC 6 Music radio show called 'Biorhythms'. For this feature, listeners are invited to submit three songs: one that connects with them on a physical level, one on an intellectual level, and one on an emotional level.

A few weeks ago, Lauren's guest was a woman called Stephanie, and as she talked about her relationship with music my ears pricked up. Stephanie had discovered the Smiths at the age of thirteen, and as she talked about how she'd found them and her love for their music I recognised a kindred spirit.

When I was twelve, I went to Our Price one day with a ten-pound record voucher that I'd been given for Christmas and no idea what to spend it on. I leafed through the records until my eye was caught by a white sleeve with the words 'New Order Substance 1987' and nothing else, no glossy band photo, no pretentious art - it was stark and compellingly enigmatic. Turning the record over, I read the tracklisting. I recognised some of the song titles, and thought I remembered hearing some of the songs on the radio and liking them though I couldn't remember how they went. I bought the record, listened to it and a switch was flicked. This incredible music captivated me, and it was the beginning of an obsession that's lasted all my life.

As a twelve year old girl, in a time before the Internet, iTunes, file-sharing, I was on my own when it came to discovering and consuming music. At school, no one had yet heard of the bands I was falling in love with. My only source of information about them was what I could glean from the pages of Smash Hits - I hadn't even heard of the NME or Melody Maker - and given that I was coming late to this music, all of which had been released many years earlier, that was hardly anything. I felt like a detective, putting together scraps of evidence that gradually fitted together to reveal a new world that was mine to claim.

Nowadays, things would be so different. I could find out all I needed to know about these bands in an afternoon, and download their entire back catalogues from Spotify in a second. Today, I'd probably listen to each song for half of the first verse before skipping on to the next one, unconstrained by the need to fast forward a tape or move the needle across a record (though I acknowledge my extremely short attention span is as much to blame for this as modern technology). Although at the age of 12 I would have loved to have been able to go straight to Wikipedia to find all I wanted to know, I realise now that the slow reveal of all this music was much more deeply satisfying than its rapid acquisition would be nowadays. It's an experience that I treasure having had.

As well as enjoying hearing a story of musical discovery so similar to my own, I also found it inspiring to hear another woman talk about her genuine love for music. As a music fan, it has sadly always been obvious to me that your views on music aren't taken as seriously if you're female. More than that, there just aren't that many women my age who are still into music to the same extent as a lot of men are. Recently, I went to see Ride - a band I loved very much when I was thirteen who have recently reformed - and was taken aback that the ratio of men to women at the gig was about 8:1. I don't really understand why. Back in their heyday they had many female fans, who seem to have disappeared. Maybe it's because now so many of us are middle aged parents the women are at home looking after the children? Surely not! Or is it because Ride's female fans have 'grown out of' music? Again, I really hope not - mainly because I don't want to believe that it's possible to grow out of loving music. Besides, why would this happen to women more than men?

I happen to believe that besides the obvious physical differences, very little separates the sexes. In particular, I don't believe there's anything about a male brain that makes it more susceptible to music than a female one. I can only assume that it's social conditioning that means women are less likely to identify as music fans, especially as they get older. Maybe this is changing for women younger than me. I really hope so.

Sunday, 22 November 2015

How to cure hypochondria

I've always been a hypochondriac. When I was about 8 or 9 I remember listening to a tape of Jacqueline Du Pre and my mother explaining to me how she had been cut down in her prime by this awful disease, MS, that gradually makes you unable to move until finally you're completely paralysed and then you die (at least, that is how I understood her explanation).

My mother must have told me that one of the symptoms was pins and  needles, because every time I had them after that I was terrified it was the start of MS - even though it was always when I'd been sitting or lying awkwardly. As I grew older, I never shook off that fear of getting MS - the irony! But I can't pretend I somehow had a foreshadowing of it - because there are many other diseases I've convinced myself I had over the years and MS is far from my only great fear.

Hypochondria - health anxiety as it is also known - is an awful condition. The 'International Statistical Classification of Diseases' defines it as follows: 
A. Either one of the following:
  • A persistent belief, of at least six months' duration, of the presence of a maximum of two serious physical diseases (of which at least one must be specifically named by the patient).
  • A persistent preoccupation with a presumed deformity or disfigurement 
B. Preoccupation with the belief and the symptoms causes persistent distress or interference with personal functioning in daily living, and leads the patient to seek medical treatment or investigations (or equivalent help from local healers).
C. Persistent refusal to accept medical advice that there is no adequate physical cause for the symptoms or physical abnormality, except for short periods of up to a few weeks at a time immediately after or during medical investigations.
I'm lucky to have been affected by hypochondria relatively mildly, but it has been a feature of my life for as long as I can remember. It is cruelly self-sustaining because - for me at least - it is strangely reassuring. When in its tightest grip I felt I couldn't let go of my fears and enjoy my life, because it would be just when I was least expecting it that I would find out I had a terrible illness.

When I had a brain scan that showed changes indicative of early MS, in 2008, my hypochondria fed on this event and evolved to become something that almost stopped me functioning at all. For the seven years since the scan, I've felt a cloud hanging over me, an invisible hand on my shoulder, always reminding me to keep worrying - or else. Or else my worst fears would come true. Hypochondria had a profound effect on every aspect of my life, plunging me into deep depression and making me too afraid to make the simplest plans for the future.

I fixated on MS - obviously - but that was too scary and too real to confront directly. It was only privately, in my head, that I obsessed over many symptoms, Googling them in the hope of finding reassurance that was always elusive. I was much too scared to go to my GP and talk about any of these symptoms. Instead, in an elaborate attempt to distract myself from what I must subconsciously have known was the truth a myriad of other health worries sprung up - melanoma, breast cancer, lymphoma - all of which I could go to the GP about because deep-down I knew I didn't have them. Finally, I ended up breaking down in yet another GP appointment and was referred for counselling - but I was still too scared to mention MS to anyone. It took 5 months of cognitive behavioural therapy before I could tell the therapist about the scan, and another 4 before she could convince me that I needed to go to the GP about the walking problems I'd been having, but she only persuaded me because she made me believe that my fear of MS was unfounded. She also convinced me that it was OK to say 'I don't have MS' (something I was much too scared to do in case I 'tempted fate'). I felt happy and able to plan for the future for the first time in a really long time.

Little did I know, I was setting out on the long path from GP to orthopaedic surgeon, to physiotherapist, to neurologist, to diagnosis with MS. At last, in the hollowest of hollow victories, I found out that I was right: firstly, I really had been ill all along, and secondly - as anticipated - as soon as I let my guard down I had found out that I had a dreadful illness.

In the face of all this, I could be angry. I could get even more anxious. I could feel that it's pointless to try to be happy, that there will always be something around the corner that will ruin everything - but strangely, I don't. Quite the opposite. I feel freed of my hypochondria. I never need to worry any more about having MS, because I know that I do have it. I don't need to worry whether this sensation or that weakness is MS because in all probability, it is. Worry is a more pernicious, draining emotion than any other and without it as a constant companion I can finally open my eyes to the world around me and enjoy every precious moment.

I spent a long time wrestling with hypochondria, and nothing worked to vanquish it. Nothing, that is, except getting genuinely ill.