Tuesday 29 May 2012

Let's get physical

Love it or loathe it, exercise is something that we should all do more of and people with MS are no exception. According to the MS Society exercise can improve the overall health of people with milder MS. It can help people with more severe MS to stay as mobile and active as possible and improve muscle strength and fitness, helping with mobility or weakness problems.

For illustration purposes only.
Obviously if I looked like this then the
gym mirror would be my favourite
 place on Earth
It has been a long and arduous journey to find a form of exercise that suits me.  If only reaching for the remote control whilst simultaneously opening the wrapper of a Double Decker could be categorised as “strenuous activity”. Despite being quite sporty at school, I never really “got” the concept of exercise as an adult.  Over the years I have dabbled with aerobics classes, STEP, yoga, and Body Balance. I even bought an ill-advised “Callanetics” video.  The drawbacks of exercising in a gym in front of other people are both numerous and obvious. I don’t think I am exaggerating when I say that an aerobics class is, for me, abject physical and mental torture.  The horror of watching my wobbly bits bounce up and down is only surpassed by the despondency caused by looking at my puce, sweaty head.  Is there anywhere more depressing on earth than the Gym mirror?  The home fitness video option is also not for me as I don’t have the requisite motivation or tenacity.  The mere sight of a shiny haired, taut-bodied Davina McCall is enough to induce bouts of aggressive swearing at the TV – not a good example to set my three children, “Why are you shouting at the pretty lady Mummy?”

Just about to cycle down Glencoe
wearing a very flattering hi-viz jacket.
Eight years ago I was desperately looking for a way to exercise off some of the jelly belly that was an inevitable consequence of two pregnancies and a pre-natal penchant for Star Bars.   I decided to buy a bike and for the first time since school, I started to enjoy exercise again.  Cycling appeals to me on many different levels.  I love being out in the fresh air with the sun (or even rain) on my face. The bike gets me into the glorious Lake District countryside far more quickly than walking. But most importantly, cycling provides me with a valid excuse to escape the noise and chaos of family life and find some much needed headspace.  I put the world to rights on these bike rides – I have time to mentally process anything that might be worrying me and that can only be a good thing when it comes to managing any stress in my life.

My first MS relapse resulted in paralysis from the waist down for three weeks.  When I started to recover I instinctively turned to cycling (albeit on an exercise bike) to help improve the strength in my legs.  It was difficult to know whether my legs were weak because of the MS, or whether the weakness was due to the long period of immobility the MS relapse had caused.  It was probably a bit of both.  After that first attack I thought, perhaps naively, that being fit and strong would mean that future relapses would not affect me so badly.  I quickly learned that this is not the case; when a relapse hits there is little you can do in terms of exercise to help.  In fact in my experience, exercise is the very last thing I want or should be doing in the midst of an attack.  Rest and recuperation is the key here.  But as soon as I start to feel better I go outside in the fresh air and try and get moving again – stretching, flexing, walking and when eventually I am strong enough, cycling.

The arrival of Harry the dog has meant that I don’t get out on my bike as much as I used to.  Dog walks are now the order of the day but I still love that feeling of getting on bike and heading for the hills. Cycling is good for the soul.

I have to come to realise that exercise is essential if I want to confront this disease head-on, both physically and mentally. Exercise is not a magic bullet for my MS but it will provide me with the best possible foundation to my future recovery - just as long as there are no mirrors…

Thursday 17 May 2012

A small life?

I am fast approaching 40, an age when people often become reflective, take stock of what they have achieved, perhaps even have a midlife crisis and buy a Porsche. I was diagnosed with MS when I was 25 – I was barely an adult. We had just bought our first flat, we were the proud owners of a cat and a mortgage, we had just started a business – it felt like we were playing at being grown-ups (a feeling that has never quite left me).

Two years after my diagnosis I decided to go part time at work.  I think people thought I was weird for going part time at such an early age. Most women don’t choose to work part time until they have a “proper” reason, such as child rearing. However I had an illness to hide behind. I enjoyed my job but not as much as I enjoyed being at home.  Interestingly though, if anyone asked me at the time why I had gone part time I would justify it on the basis that I was working hard to set up a business with my husband; I was in effect replacing work with work.  This was partly true, I was working hard, but the main reason I reduced my hours is that I felt that life had dealt me a horrible hand and I wanted something in return… a less stressful life.

There is a lot of anecdotal evidence that stress has an adverse effect on MS.  This has certainly been my own experience with some of my worst relapses occurring during or shortly after highly stressful life  events.  It makes sense to me that extreme mental anxiety makes me vulnerable – it leaves my body exposed and unprotected and my MS can take hold.  Last summer I had two massive relapses and stress was definitely the underlying cause. Bereavement, family illness and confrontation took their toll. I could literally feel the stress physically manifest itself in my body.  My legs would start by tingling, followed by numbness and they became weaker and weaker until I got to the point where I couldn’t walk. I knew I was stressed and I knew that the stress was making me ill and the symptoms only served to make me more stressed – it was a vicious circle.

Sometimes there is nothing you can do about stress.  To quote the lyrics of Ronan Keating (something which I am not particularly proud of doing) “Life is a Rollercoaster”.  Life sometimes throws things at you over which you have little or no control – the death of someone you love, the breakdown of a relationship. This is why it is so important to reduce stress in those areas of our life where we do have some control.  I try (and sometimes fail miserably) to not worry about the little things – whether I should thinner, more successful, have better hair, wishing I had more money.  Although I didn’t know it at the time, my decision all those years ago to work part-time indirectly helped to reduce stress in that aspect of my life.  Inadvertently I had stumbled across the concept of quality work / life balance long before Red magazine had started writing columns about it.

The downside of all this stress reduction and downsizing is that sometimes I can feel that my life is small. Small in the sense that I don’t have the high-flying career that my law degree had set me up for; small in the sense that I now live in the same town where I grew up; small in the sense that I am not changing the world in any big way. But is this necessarily a bad thing?

I live in a lovely house in a beautiful part of the world, in a town where you can say hello to people you don’t know on the street without them thinking you have severe mental health problems.  My family live close by, I have a wonderful circle of friends.  I have travelled all over the world. I can see mountains, lakes and the sea within five minutes of leaving my house.  I have a brilliant husband and three gorgeous, healthy and very loud children.  I work from home and can choose my hours. I love cooking, cycling, reading, gossiping and growing my own vegetables and I have time to do all of these things.

If I sound a little bit smug then I apologise but I believe it is important to recognise all the good things about your life and celebrate them.  My life is a long way from being a Boden advert, the sun isn’t always shining and I don’t have 36” legs but my small life is pretty good and I can recommend downsizing to everyone regardless of whether you suffer from MS or not.

Thursday 10 May 2012

Keeping it in the family

My Mum has had MS for all of my life.  She was diagnosed when she was in her mid twenties two years before I was born.  This was the early 1970s before anything was really known about MS and she endured years of uncertainty with no definitive diagnosis and some quite shocking attitudes amongst the medical profession. She was told by more than one Doctor that it was ‘all in her head’.

As I was growing up I was always aware of my Mum’s illness – it was an ever-present niggle in an otherwise happy childhood. We did normal family things – picnics, walks, trips to Frontier Land in Morecambe, and not so normal things – displaying the dug up skull of our long-dead cat (which my Mum had “put through the dishwasher” to clean).

Mum and Dad on their wedding day
For the most part life was pretty normal but every now and then MS would suddenly rear its ugly head and the “niggle” would quickly transform into fully-fledged fear that Mum was really ill; sometimes in my more melodramatic moments I thought she might even die. My sister and I were little domestic goddesses in training – we learnt to iron, cook and clean.  I could cook a mean Findus Crispy Pancake by the age of 10. We didn’t resent it, it was our normality and I think it has stood us in good stead for the rest of our lives.

Mum generally endured the MS relapses with dignity, grace and humour.  She was strong for the rest of us. She was the one I went to with my teenage angst problems. My Mum was, still is, beautiful.  She was the coolest Mum in the playground. I remember feeling really miffed at 14 years of age when the waiters on holiday flirted with her more than they did with me. I am not bitter about this. She was a M.I.L.F., whereas I had a flick so covered in hairspray that the whole thing would lift in the breeze, and a mullet that Billy Ray Cyrus would have been proud of.

Nonetheless, life has been hard for my Mum, especially the last ten years.  MS can be a cruel disease and in her case it has ultimately robbed her of her dignity.  This is painful enough for us, the people who love her, to witness. So what it must be like for her is almost too horrible to contemplate.  She can be stroppy and difficult, but I think even Mum would admit that she could be a bit stroppy and difficult long before MS took away the power in her legs. On the plus side, Mum has lived, until relatively recently, a good life.  My sister and I both live close by, she has enjoyed her grandchildren, she has a lovely home and most importantly she has a husband by her side who loves her more than anything in the world.

In some ways having a Mum with the same disease as me has been a positive thing - there was no fear of the unknown. When I was diagnosed, I didn’t jump to the conclusion that many newly diagnosed people do…that my life was over.  I learnt from her that I could face this illness and live a normal life for most of the time.  In my darker moments I sometimes dare to compare myself to her.  Were her symptoms worse than mine when she was my age?  What was she still able to do at my stage of life?  My gut feeling is that I have less long-term damage than my Mum did at my age. Plus in 2012 I have the added advantage of access to a large body of research, treatment options and real hope that a cure may one day be found. 

So, looking to the future, what about the risk MS poses to my own children? According to research done in 2007 there are certain genes which can be inherited, genes which work to increase susceptibility to MS by about 30%. This might partly explain why MS sometimes appears to run in families. Obviously I want to do everything I can to prevent my children developing the disease and thankfully there does appear to be a cheap, simple and relatively effective way to minimise the risk… Sunshine!   Studies of the distribution of MS around the world show that it is generally more common the further you are from the equator. This suggests a link between lack of exposure to sunlight, consequent lack of vitamin D production and the development of MS.  Great news if you live in southern Spain but a bit crap if like me, you live in one of the rainiest parts of one of the rainiest countries in the world.  Luckily you can also get your daily dose of Vitamin D in the form of a supplement, which I give to my children on days when the sun isn’t shining.  I also take a Vitamin D3 supplement as research has also shown that it may help to cut relapse rates in MS sufferers by as much as 40%.

So I am hopeful that the MS part of my genetic inheritance is something that will not proceed any further along the family tree.  If only Vitamin D would help with the genes which control Dad’s receding gums and Mum’s eye-bags…

Friday 4 May 2012

Does this make me shallow?

I have been on my healthy eating anti-MS diet since January 2012.  Now I want to make it very clear that my primary aim in doing this is to try and reduce my risk of further MS attacks and to ensure that my body is as healthy and therefore resilient as possible.  So please don’t judge me when I say…the fact that I have lost a stone and can now fit into my old jeans, is thing I am most pleased about. The weight has come off very slowly and this is largely due to occasional relapses involving pork crackling, dauphinoise potatoes and full english breakfasts, but the point is, the weight is coming off and 80% of the time I am really very well behaved.

The problem I have had in the past with any kind of diet is that as soon as I am told not to eat something, I immediately fixate on that thing and it becomes a mental battle, which I ultimately lose (the Dairy Milk always wins!)  This time it is different because for the first time I am properly motivated by something other than vanity. It’s amazing how a week in a wheelchair can focus your mind.

These are my daily aims:
To eat less than 15g of saturated fat per day. 
To eat a healthy breakfast – my new mantra is - if you start the day well then the rest of the day follows (a bit like that Bran Flakes advert with the big Scottish cycling man - Chris Hoy?)
To eat more fruit and veg
To eat little or no meat.
Eat more fish and shellfish
To eat more wholegrain foods
To avoid fatty dairy products like butter and cheese.

Now as everyone who knows me will tell you, I am a committed carnivore whose idea of heaven is a rib-eye steak followed by a lump of cheese and big glass of red wine, so this was never going to be easy for me, but I am, hand on heart, trying my best.

Strictly speaking I shouldn’t be eating any meat but I know avoiding it totally is the path to disaster.  As soon as I say no more meat forever – I will fail.  I am weak and I will give up because it becomes too much of a challenge, too big, too boring. I have always admired people who can go down the total abstinence route – I am just not one of them.

Having said that, I know that I have to keep my saturated fat levels low and this is where my online food diary comes in.  I put in what I am eating and it calculates calories, protein carbs, fat and saturated fat as well as vitamins etc.  It would be pointless to lie to it (believe me I have tried) but it reminds me of the 15g saturated fat per day boundary I have set myself.  It even gives me a grade at the end of the day (if I get an “A” I feel absurdly proud!) I usually keep to about 10g per day in the week and then probably go a bit above this at weekends when all the lovely, bad things are around.

Dr Swank, the man who pioneered this diet plan, is probably turning in his grave at my interpretation of it but I think even he would be proud of the fact that I am willing to try Quorn in the name of healthy living.

Tuesday 1 May 2012

I am not sure why anyone would want to read about my life.  This doesn't bother me too much, as I am pretty sure that this blog will not be read by that many people, so in this spirit of low expectation, I am going to have a go anyway.

I am a 39 year old woman with a husband, three kids, two cats, a dog, three chickens and a law degree.  I also happen to suffer from Multiple Sclerosis (MS). 

The MS part of my life started in 1998 on my 25th Birthday.  I woke up with a really sore lower back and my legs felt really heavy.  I remember feeling guilty when I called work as I could tell my boss was thinking I was pulling a "birthday sickie".  Over the next couple of days my legs got worse, I could barely walk across the room, my legs were weak and totally numb.  The pain in my back was excruciating.  My friend who is a GP later told me that she thought I might have had a tumour on my spine (I'm glad she decided not to "share" this thought with me at the time). I deteriorated over the coming days and was eventually admitted to Preston Hospital Neurology unit.  They did the standard tests - MRI, lumbar puncture and diagnosed Transverse Myelitis.  I was given high dose IV steroids and lots of physio.  Thankfully I made a good recovery and 3 weeks later I went home - shell-shocked but resolved to be proactive about getting full function back.  Nobody specifically mentioned MS but I had my suspicions.  My Mum has MS and I knew the signs.  I think my parents were terrified. I got my legs back and walked down the aisle 3 months later.

In October 1998 I was in London at a Trade Show and had met a friend for a few drinks. When I woke up the next morning I thought I was experiencing the worst hangover in history. The room span and I started vomiting. I had to make my excuses from the Trade Show (cue lots of knowing looks from my colleagues about drinking too much) and got on a train back home to Cumbria.  The following morning I opened my eyes and the room was literally upside down - my vision was severely affected and I had an extreme case of vertigo.  The vomiting didn't stop for 3 weeks.  I had another MRI and sure enough I was diagnosed with relapse remitting MS (RRMS).

This all sounds a bit depressing and of course, when I was in the thick of it, I felt desolate and to put it bluntly I was shitting myself that my life, as I knew it, was over. But...and this is the strange thing about RRMS - when I eventually recovered from each of these attacks I was on such a high that I felt well again, that the spectre of the illness seemed to disappear with the symptoms.

In the fourteen years since I was diagnosed, I have had three children.  I felt brilliant throughout all of my pregnancies and I genuinely believe my babies helped keep my MS in check.  Apart from an episode of weakness in my legs in 2003 for which I had IV steroids and two minor bouts of blurred vision I have had very few symptoms.  I had almost reached a point where I thought, "The Doctors have got it wrong, I don't have MS".  To be honest I mostly forgot about it.  

Then I had the most stressful 12 months of my life. My funny, vibrant and generally fabulous sister-in-law died very suddenly from a brain aneurysm, leaving a huge emotional black hole in all of our lives. My Mum almost died from pancreatitis and spent seven months in hospital recovering.  Needless to say, my stress levels went through the roof.  Finally last summer my body decided to rebel and I had two whopping attacks where I lost all power in my legs.  I managed to stay out of hospital (my husband was carrying me to the toilet at one point) and I had two courses of high dose oral steroids.  My neurologist was talking about disease modifying drugs.  In the space of two months I had gone from, "I don't really have MS" to, "Will I be able to walk to the toilet on my own again?" 

I recovered but this time I decided that burying my head in the sand was no longer an option.  It had stood me in good stead for 14 years but I finally needed a plan of action. My gut feeling was that I didn't want to start on the disease modifying drugs unless absolutely necessary, so I trawled the internet and came across the work of the Swank Foundation http://www.swankmsdiet.org/ and http://www.overcomingmultiplesclerosis.org/

Although their approaches differ slightly, they are both advocates of a healthy diet low in saturated fat.  The Overcoming Multiple Sclerosis programme also recommends supplementing with high doses of fish oil and Vitamin D.  I am not a scientist or an expert in MS but I think this is worth a shot. Their recommendations make good sense and have a large body of research behind them to back them up.  But let's face it - even if it has no effect on the progression of my disease, then at the very least I will be healthy.  I will be giving my body the best chance of healing itself after an attack.  There is nothing weird or wonderful about the diet - it is just how we should all be eating in an ideal world.  

That's the theory anyway....now where did I put that Cadbury's Creme Egg?

Sorry that this has been a long opening post - I wanted to give you the back-story to my story.  What I am hoping to do with this blog is to share my journey - to be totally honest about my successes and failures, to show how this illness impacts on my family and maybe even share some recipes!