Why mum’s wellies have holes in them (and other reasons why its hard for mum’s to put themselves first)

My feet were wet. As I stood in the boggy marsh on a moor in West Wales looking out (through the rain) I remembered that my wellies had holes in them. I knew they had a hole in them but replacing my wellies had not been a priority. It had fallen further and further down the list of ‘things to do’. Usurped by the demands of being a mum whose priority is to make sure no-one else’s wellies have holes in (metaphorically speaking).

 

That’s what we do as mums. Most of us put up with the wet feet, as long as our family feet are dry. Often we go without so our kids don’t have to. We’re not being martyrs it’s just that doing this is an instinctive drive. It also seems to have become part of the job description. For some people, this runs parallel with the expectation that we also work outside the home (where we often continue to prioritise the needs of others, and heap praise on others while shunning recognition of our own achievements; google ‘imposter syndrome’). We may also have to juggle significant caring and support roles for other family members; extended family, friends and increasingly our ageing parents (because let’s face it, that’s what women do). Oh and by the way, (rule number 2) we must never resent this, and if we do we must manage the guilt that follows the resentment. NB. Chaps, this is an insight into how women’s minds work – and yes, it is exhausting. And yes, I realise I am overgeneralising and there are exceptions to the rule, but stick with me…).

Even for those of us who actively promote the necessity of taking care of ourselves so we can care for others can struggle. The fact that we need to be a ‘selfish mother’ to be the best mother we can is often still frowned upon, even in 2017. It can feel hard for many mothers, working mums, single parents, and especially those living with chronic illnesses like Multiple Sclerosis. Mothers who may be isolated, or who frequently feel overwhelmed by the demands of the daily tasks of living.  There is precious little time or energy to even think about one’s own health. Many report being weighed down by the “guilt” that they can’t be like “other mums”. That their children miss out.

Being diagnosed with a serious chronic illness, like MS or cancer can leave you feeling entirely desperate and afraid. The fear and anxiety alone can be overwhelming. Add to the mix some ‘mother guilt’ (the G word again…) about what this means for your children, and the impact of illness can feel unbearable. Not being able to play with your children in the snow, run in the ‘mum’s race’ or simply being too exhausted to cook healthy meals leaves mothers feeling so many confusing and heart-breaking emotions.

For any mum, it is hard to prioritise your own needs over the needs of her family, but when you also have a condition that is already affecting your family the chances are you want to minimise this, not shine a light on it (“oh me, I’m off to a ashram in the hills for a week – make your own tea and watch that busy road!!!”). But, and this is a very important but. This needs to change. We need to find a way for this information to reach those mums who are disconnected from the MS research. Who don’t know anyone else with MS (who isn’t 70 and in a wheelchair). The evidence from the HOLISM studies show that these changes can change the course of their illness so may well be worth the effort. You may be able to support that mum.

We know from the longitudinal studies reported by Prof Roy Swank, and the emerging evidence from the HOLISM studis at the The Neuroepidemiology Unit at the Centre for Epidemiology and Biostatistics at the University of Melbourne, that making significant changes to diet and lifestyle can slow down the progression of MS symptoms, and for many it can halt the illness altogether. The impact of such dietary changes is becoming more and more evident in mainstream media too – with the popularity of entrepreneur Ella Mills of ‘Deliciously Ella’ a great example of healing auto-immune disorder through diet and lifestyle.  The key to these success stories is that people were able to press pause on their ‘normal life’. They were lucky enough to find the information they needed to make the changes. They made changes to their diet and lifestyle. Many relinquished some of the demands being made of them in order to give them the best chance of recovery.

There are thousands of women like Ella Mills, and thousands of women with autoimmune disorders like MS. The MS Society estimates there are 12,000 women between the age of 20-40 in the UK, and many of those are raising families under a cloud of uncertainty about their future health.. Lots of these mums are isolated and don’t know other mums with MS – so they just don’t talk about. It’s not the easiest of things to casually drop in the conversation at the school gates…

Asking mothers to take time away from their families or their ‘role’ as a mother, to take for themselves is a very big ask. It can feel impossible for people who already feel they aren’t being a ‘good enough’ parent to take even more time for themselves.  Throw into the mix a pinch of denial fuelled by our fears, a smattering of lack of support from a husband, or a teaspoon of ‘being a single parent’ and the odds are stacked against you. So on International Women’s Day and with Mother’s Day fast approaching I’m hoping people can help me spread the word in the hope that women and mothers with MS, and other chronic health conditions know it is okay to take the time they need. Feel able to make the changes they need to make. In fact its more than okay, it’s essential. It will give you the best chance to be the best mum you can be.

If you think this is an important message or know a mum who’s living with a chronic health condition then please show your support by sharing this.

For more information see  https://overcomingms.org/holism-study/

@myomslife www.memsandbeingmum.wordpress.com.

 

 

 

 

Terror & Trauma

The news is filled with tragedy and trauma, and the implications of this run deep.

The ‘story of the shattered vase’ says that should a precious vase break it may be glued back together. The vase can look as it did before and the glue may not be visible to the eye. For many people, a trauma event is like this and while they may change some of individual’s core assumptions, the overall world views are not changed. The individual is able to integrate and ‘assimilate’ the experience relatively easily. However, should the vase smash into a thousand tiny pieces. Devastated. This may be more difficult for the individual to put them back together and the vase may seem to be beyond repair. Even if the vase can be repaired the cracks and sticky tape holding can be seen, look scruffy and even the smallest of knocks may result in the vase falling apart all over again. Like this, there are many people who experience trauma who are more fragile. Live cautiously and in fear; vulnerable to being shattered again. There are also people who may gather up the pieces of the vase and build something new. While they are sad at the loss of the old vase they have accepted that it is broken and they begin to consider what they can construct from the broken pieces. At the core of the shattered vase theory is the belief that people are growth oriented beings who are instinctively drawn to ‘accommodate’ our psychological experiences. The story is a useful metaphor however, in reality, growth following trauma is likely to require processes more complex than simply ‘rebuilding’. In fact, rebuilding and moving forward will undoubtedly result in changes to us and who we are.

Sometimes I grieve for the old me. I miss the carefree person I used to be. Fearless and grabbing at life with both hands, unafraid of the consequences. Illness and diagnosis shine a spotlight of uncertainty over everything you do. Some people find a way to avoid it. For me it is unavoidable. I am left with a great deal of health anxiety that remains largely voiced only in my head. I have steady and sometimes overwhelming fears about what will happen to me; not just in regards of MS but other sinister and life threatening conditions. To me and my loved ones. In part this is because once an unthinkable happens to you, the naive confidence that you are indestructible is lost. And so I am pretty sure that some of my oldest friends might say I am less fun. I can be morbid. Anxious. That I have gone form vivacious to vulnerable. My thoughts about life, the world and relationships have been altered and for them, at times, it must be confusing. I am sure I have been hard work and I’m grateful for their patience and support.

Watching haunting images of tragedy and terror on the news is a cruel reminder for me of how trauma runs deep. When I see reports of terrorist attacks, or the tragedy of Grenfell Tower in London I cry. Not only for the lives lost but also for the tragedy for those left behind. The ripple effect of trauma that will go on changing lives for years to come. The families, friends and community who remain. Emergency services; the police and fire service personnel who had to see things no human should have to see. Because moving on after trauma does not mean getting back to normal. It means being changed and finding a way to live. Putting the vase back together, even though we all know it’s going to look very different.

 

“No evidence of ongoing active disease” #overcomingms

In 2012, when I was diagnosed with MS I was devastated and determined. Determined to do all I could to halt the progression of this potentially horrendous disease. Determined to be ‘benign’.

Changing my diet and the way I lived my life enabled me to do this. I could ‘watch and wait’ or I could do something. Finding ‘Overcoming MS’ and switching to a plant-based diet was the only option I found that gave me any hope. My head strong nature and skills at finding the right information  were my tools. Everything I read about changing my diet and lifestyle made logical, intuitive sense. Nothing I read could put me off.

A plant-based diet rich in omega 3 helps the body sustain an alkali balance which is ant-inflammatory. Taking vitamin D supplements is increasingly becoming a mainstream recommendation for all MS patients. Doing regular exercise and keeping saturated fat intake low is increasingly the diet of choice for everyone. These were the basic building blocks. Nothing crazy.

Lifestyle changes are as big a deal as you consider them to be. And as easy as the support you have around you. I have always said that for me, it was a choice between pizza and a wheel chair – and I never really had to think too hard about that.

Have I ever slipped ‘off the wagon’? Sure.

Have I ever doubted the validity of what I was doing. Never.

Did I receive any active support, encouragement or validation for the approach I was taking from mainstream medicine. None.

Still, when I slid into the MRI scanner at the tail end of last year I would be lying if I said I wasn’t nervous about what the results would be. It was almost 5 years on and the stakes could be potentially a great deal higher.

My new neurologist had pragmatically and supportively talked through options with me. If the scan showed that I had experienced progression, all be it with very few symptoms, perhaps it was time to consider treatment. He was running a trial.. Lets wait and see what the scan shows we agreed. And the scan said:

In comparison to the previous imaging of 2012 things appear to be stable with no obvious new T2 lesion… There are no contrasting lesions. Overall there is no evidence of ongoing active disease.

I  knew that the actions I had taken had changed the course of my MS. My invisible illness, which neurology told me was attacking me even when I was not experiencing symptoms – well, it hadn’t been. At all. Every action has a consequence and I was living proof that some of us are able to stop MS in its tracks by changing the way we live. The evidence is growing year on year that the changes I have made can improve symptoms of MS and promote general wellbeing (see the HOLISM studies: https://overcomingms.org/holism-study/ ). For some people they are life changing. For others they slow things down.

So, do I believe there is a viral component that underlies MS? Yes – I believe there is.

Do I think some people are predisposed to MS? Yes, I do.

Do I think lifestyle factors play a part in both it’s development, and recovery? Yes I really do.

Did I change the course of my illness by changing my life. Of course I did.

Change affects change. Food. Stress. Choices.  By changing one thing you automatically change others. Taking a logical, sensible approach to my illness changed the course of the disease to a greater or lesser degree.

Having the resources and the determination to educate myself has protected me. Now I want the information that I had to be available to everyone who has been diagnosed with MS. I’m devastated it’s not, and I am determined that it will be. If you can help me with this, please do get in touch.

#overcomingms

how do we cope with the *breakthroughs*

Living with a chronic illness provides many opportunities for your loved ones (and relative strangers) to tell you about the latest *new treatment*. Often there are TV programmes, or newspaper articles that said family might tell you about or show you. It’s possible that friends may know someone who has had this breakthrough treatment. Believe me when I say I wholeheartedly hope each an every time. In fact I feel sure that the friend’s friend who had the treatment, is probably going to be one of the lucky ones. That she will probably be cured. There’s a small voice in my head that says – “see, she was brave enough to take the drug / treatment…now look. She’s benefitting now isn’t she!”. Panic sets in…

When I was diagnosed with relapsing remitting MS in 2012 the doctors and I were happy to take a ‘watch and wait’ approach. They watched and I waited…for about a nanosecond and then got on with all the things I could do to change my lifestyle and diet to one that maximised my chances of recovery and a healthy life with MS. I have talked at length in previous posts about how I follow the Overcoming MS lifestyle approach promoted by Prof George Jelinek, which drew on the work of US physician Roy Swank among other research. It made no intuitive sense at all for me to take a drug with nasty side effects when I didn’t seem to be experiencing rapid relapses and my symptoms were improving month on month. I threw myself into my lifestyle. Vegan diet – check. Vitamin D supplement – check. Omega 3 supplements – check. Exercise – check. Mindful meditation – Ommm….check. I began trying to live an all round less stressful and more healthy life. And. It. Felt. Good. I. Did. Not. Relapse.

BUT. Anyone living with a chronic illness knows never, EVER, to feel smug. Life with a chronic illness or disorder, such as MS means that coping with the uncertainty that these types of diagnosis brings is perhaps the biggest adjustment that is required and its role in chronic illness is widely recognised (Davis 1960, Wiener 1975). The individual is often left to cope with a lack of certainty regarding cause (“we just don’t know why you have got it..”), progression (“we just can’t say at this stage if or how this will progress…”) and effective treatments (“we’re working on them…”). Left asking how this will affect my life, employment and social roles? As a parent, spouse or employee? How will I cope; emotionally? Financially? The limits of medical knowledge and treatments becomes apparent with a growing realisation that many are less than effective and may have multiple side effects. Uncertainty is an uninvited guest at your dinner table, and like it or not, he is here to stay.

BUT I was well. So I felt in control. I felt that the way I was living was controlling my symptoms. The progressions. As best it could. And I still do very much believe that. This meant I did not have to work through the issues I had about potentially requiring medical intervention. Needing a drug treatment. To me, that presented defeat. It meant I really *was* an ill person. I really did have a *progressive* neurological disorder (key word here – *progressive*). My day-to-day did not suggest that anything was progressing. Yes, my life was progressing but in a good way. I was progressively becoming more fit. More healthy. My symptoms were progressively improving.

Fast forward to 2015 and the headlines were well, headlines. Apparently new research was apparently now suggesting that watching and waiting was not the right thing. That an early, aggressive approach using drugs, was required in the first few years after diagnosis to maximise the chances of recovery. To minimise demyelination. Furthermore, leading MS charities and patient groups were then suggesting we requested regular MRI scans to track the progression (or lack?) of demyelination. All of the above triggered a massive WTF? Not only had I not had an MRI scan since being diagnosed, but I was clearly out that “early” response period. That voice in my head fired up loudly. “you really did miss the boat there…”. “Such a shame that you missed that window of opportunity for your treatment. Now you’re really screwed”. “They did tell you it was the ‘invisible illness’. That damage could be done without necessarily experiencing symptoms…tut tut”.

When I looked deeper into this research, there were far more caveats and disclaimers than the headlines first suggested. This research seemed to me to be particularly relevant to people who had rapidly relapsing MS, or who were progressing quickly, early on after diagnosis. There also seemed to be a group of people to whom this did not apply, in particular people whose symptoms had resolved or who may have experienced a clinically isolated episode.

After a while I realised I had gone full circle. I was left at no 1. Uncertainty St. I kept knocking on the door but no-one was home. I wasn’t entirely sure if this research applied to me. Which treatments were they talking about? Was that different to the one in The Observer last week that my mother in-law cut out for me…

What I am sure of is that there is amazing research happening all the time. I know that big Pharma and drug companies are not that interested in many of the promising treatment such as bone marrow and stem cell transplantation, because they aren’t *new*treatments and as such present them with no opportunity to patent new drugs. There’s no money in it for them. I know the breakthroughs will probably be made by under funded and under appreciated academic institutes, at a slower pace than they would be if they had the funding they needed.

Finally, I want to say that I do want to know about the friend who had the treatment, I really do.  I want to know about the latest research. That’s not the point. My eyes and ears are open to the uncertainty AND the stories of hope.  But the headlines remind me that managing the uncertainty my uninvited guest brings is an ongoing task, and while there is so much uncertainty I will try to focus on what is certain. I am certain that the changes I have made to my life have improved both my symptoms and my happiness. So I will choose to focus on that, even when the headlines make that hard.

 

“Stress. we need to talk about us. It’s not you, it’s me”.

In the 80’s (I remember them and it wasn’t pretty), stress got a bad rep. It was blamed for all sorts. Type A behaviour was pretty big news and crossed the line between psychology theory and mainstream media. Since then it’s been pretty widely accepted that stress is bad for us. Stress in a constant and unrelenting way that is. So there is evidence that a bit of stress is pretty good for helping us perform well. So, students who are little bit stressed about exams tend to perform better than students who aren’t stressed at all for example. That’s because our autonomic response – our physical response to stress, focusses us mentally and can help improve our performance, at least in the short term.

Like many people diagnosed with MS, and similarly for other illnesses, but particular inflammatory or autoimmune disorders, stress is often a precipitator to illness. It’s established in mainstream MS literature that stress can contribute to relapse and you often read it in the patient info, though not much of that literature takes the time to explain why, assuming that the explanation that ‘stress is bad’ is perhaps enough to help us poor ‘patients’ understand. Put simply it’s because stress is inflammatory. MS is an inflammatory disease. It’s caused by inflammation that leaves lesions. Stress tips our body into that inflammatory response and this seems to be why we experience relapses and illness progression. In part. Ok so that’s a very simplified version of events…

I was classic. Stressed. Tired (2 kids under 5). Coping (just) and with a genetic predisposition. Throw in some coffee, red wine coca cola and Boom! Years of low level MS symptoms that never evolved into a full relapse became a full relapse. In the overhaul of my life in response to MS (anyone following my journey will know there have been many changes) Stress was a tricky one. I was the type of person who thrived on challenge. Who pushed herself. Aimed high. The result of this is managing stress, right? How do you go about changing a major aspects of your personality? Of who you are?

Making change to your life is hard. Making changes to how you live is where you start. As someone experienced in using cognitive-behavioural therapy in my day job I knew that easiest way to affect change in the whole self, was simply to do. Fake it til you feel it, right?). That if we make the change in what we do for long enough and it will become who we are. Takes 21 days to change a habit, apparently. Sounds pretty obvious really doesn’t it? But anyone who’s tried to give up smoking, or get fit, or quit alcohol or forget a broken heart knows it’s not always as easy as it sounds. Perhaps we are divided into people who can, and people who can’t? As a psychologist I believe that we are all capable of change. Perhaps some of us need more support than others, sure, but we can all make changes. It’s not rocket science. You start small and you build. Your strength will grow in line with the courage you show in taking that chance. In trying to make changes. We can also challenge the way we think. The way we respond. Gather our support team and cheerleaders to help us.

Over time I have come to accept (and dare I say it, even like!) the part of me that is driven. That aims high. That gives a shit. That wants to make a difference to others and do the best I can for my family, for my community. Walking away from that meant walking away from huge aspects of who I am. It felt too weird. Wasteful. Unauthentic. It left me feeling like I didn’t know who I was and when your sense of self is as rocked as it is after being diagnosed with a major disease, that was NOT what I needed. I needed to find a way of accepting who I was, and being that person without it damaging my health. My future. I knew that meant I needed to develop a new relationship with stress.

In my ponderings I came across the TEDX talk by Kelly McGonigal. Kelly is a Stanford Health Psychologist who has talked most recently about shaping our response to stress in a different way. She shares the research that it was not simply the amount and extent of stress that affected people, but that when they looked closer at it, it was the people’s response to it that made the difference in how it affected them and their health. Put simply, if we regard stress as being damaging and respond to it according to those beliefs, then it will affect us in a more damaging way. Sounds simple? I’m sure it’s not quite that simple, but it gave me food for thought and has helped me begin to re-evaluate the choices I make. The thoughts I allow myself to have when I’m faced with making a choice. F. Take a look for yourself here and see what you think:

http://www.ted.com/talks/kelly_mcgonigal_how_to_make_stress_your_friend?language=en

I’ll let you know how I get on. But right now, I have to dash. I have a million things to do…

Lessons learned – 3 years on

in a few weeks it will be 3 years since I was really ill. Then diagnosed with relapsing remitting MS. It seems a good time to reflect on where I am at. I cannot believe where time is going. How my life has changed. All the incredible people MS has brought into my life. The challenges I have overcome and continue to face. Same as you all. With MS. Without it. I have learnt so many things and so many which I want to share.

My life now has become dominated by two main themes. The first and most important is to live as mindfully and fully as I can, with my family and those most important to me. Those that bring strength and joy to my life. If my mind starts to wander, I always think to myself “there’s no place I’d rather be”… (think that’s a song lyric, non?). I am blessed to have been given 3 wonderful years in which to work from home, flexibly, around family life. (oh and complete a PhD..). The second theme for me has been, as it has been for the last 20 years, about Psychology. Mine, yours and the psychology of health. I have fallen in love with the discipline again, and after years of working clinically with distress and the kind of darkness not to be talked about here, that has been a gift.

As a good friend (G’day Ana) told me when I was feeling scared and lost “doors will open”. You just have to keep pushing away. Things will come good. My commitments are different and my motivations have a different energy and depth because of my MS journey. I am not interested in sharing the mundanity of my life which is every bit as interesting and boring as yours. But what I am interested in is sharing information, creating changes in services and systmems. I care less where I am going and more where I am. And what can be changed for others. Okay so life is not without its wobbles. Without the occasional mini-breakdown. But to get up and keep going is what is important, and what is important for my children to see and to learn from.

I can share some of what I have been astounded to learn:

– that following a plant-based, vegan diet has helped me be my healthiest self. That the anti-inflammatory nature of it surely contributes to my being healthier than in years and relapse free. The evidence in the Holism study (see overcoming.MS) builds on that of Swank, and while still not fully signposted by Neurologists anyone who reads the evidence with an open mind would make the changes to their diet. They would quit smoking. They would not blindly do as their neurologist does or does not tell them, after all we used to think the world was flat. Your neurologist could change his mind tomorrow, as they often do about what is the BEST drug for you. How would you feel then? Make up your own mind. Take control.

– that meditation, be it 5 minutes or an hour is key. That I am crap at doing this and that it’s a constant struggle, reflects in part how I ended up in the difficulties I did. That many people with MS have bright and busy minds, which are hard to ‘switch off’. that this can feel almost manic. In fact, there’s a body of evidence that Biploar Disorder is significantly higher in people with MS.

– that regular, 5 times a week exercise is not what we SHOULD do, it has to be a norm. For everyone. If we are to live full and healthy lives. And to set the example to our kids that will enable them to face a healthy future. Surrounded by the sugary crap that is a million times worse than when I was a kid. Run. Hike. Swim. Cycle. Play football, tennis. Don’t make it a chore. Make it LIFE.

– that we are all going to die. That’s for sure. That all our DNA predisposes us to some illnesses. That many factors contribute to whether that illness gets triggered or those symptoms emerge. Most commonly those ‘triggers’ are viral or environmental – stress, lifestyle or environment. That I’m lucky I know about one of my vulnerabilities. It knocked me off my feet 3 years ago with a slap round the face that said “this is NOT how you live well!”.

– that taking a step away from a normal ‘life’ has shown me how busy and crazy life can become for us all. I see people who are too busy to see friends. Too busy to eat well. To busy to hang out with your kids. To read. I read somewhere that you should never become too busy making a life, that you forget to live your life.

– that I am lucky. And strong. And that you can find light in the darkest of places.

What about when you don’t take the drugs?

What about when you don’t take medication? Many people choose not to for long periods; like  super talented news reporter Stephanie Scewan. Many people do.  Many people’s symptoms necessitate it. Some people feel their symptoms don’t. Two people could have the same symptoms and manage it differently.

Most people I meet with a diagnosis of RRMS in *real* life, and in *online* life, take medication. The fact I do not is something I am hugely and overwhelmingly grateful for. I am confidant that if I had pushed my Consultant 2 years ago. At a time when I was being diagnosed and was feeling ill and frightened, he would have put me on a medication. and I would most likely still be on that, or a similar medication now. The fact I am reasonably well and don’t take medication seems another thing altogether. How many people who were put onto medication at that frightening and vulnerable time have remained well but put it down to medication it is impossible to know. Short of walking around with my MRI scan laser printed onto my t-shirt I often feel a little judged by those who I speak with in the real and online world when I tell them I don’t take medication and I am reasonably well. Relapse free. To be honest it makes me feel a bit of a fraud. Like I don’t have the *real* thing (see my last post). I am obviously saddened by this as it does not celebrate the fact that this horrible disease can take many forms and courses – including benign, to which I aspire. Including a course with very few relapses. I like to think the radical changes I have made to my life have guided the course of my MS so far at least a little bit. And at most, a lot.

Of course the radical changes have been exactly that. Radical. Giving up meat. Giving up dairy. Changing a career that may mean you earn less as a result has many implications both financially and emotionally. Committing to exercising every other day. To meditating. To spending time learning and educating oneself about the *actual* evidence needed to argue the case for the importance of lifestyle management of MS symptoms, when it is not actively encouraged in mainstream medicine or even mainstream patient support networks. To take vitamin D and omega 3. Is it hard? Of course it can be hard, at times.

So yes I could say “well, if my docs don’t recommend these things then I am not going to do them. The evidence just isn’t there…”. But that’s just not me. Because when you start to do a bit of digging the evidence is there. It’s real. There is growing evidence that people who make these changes reduce their relapses by about 30% – which is the same as most medications can offer any of us. Many people who live with symptoms of MS for many years never even relapse while following these lifestyle changes. Do you hear about them in the mainstream MS information very often? Perhaps when peoples Doc’s start recommending it, other people with MS will have the hope and support to make these radical changes and start to feel empowered to manage the debilitating symptoms of MS without considering medication as the only option. I know for many it is essential and perhaps for me too, one day. What I am talking about is an open, supportive dialogue that gives accurate and inclusive information.

I know people who have looked at the same evidence as me and felt it ‘not good enough’ to give up certain foods. To make any changes to their life. And that is their own personal choice. Me? When someone tells me I can make these changes and there’s a chance it may change the outcome of the MS. It might slow progression of MS. Then I am more than happy to give up my pizza.

Sometimes I feel excluded from the MS world because of this. I have read comments on particular forums which suggest that thinking in this way is basically “crazy”. That they wouldn’t make these changes as “there’s is no evidence”. Suggesting people like me are “cranks” and “wacko”. At times it has left me furious and hurt. Sometimes I’ve cried. Now I just don’t read them. I don’t need that kind of *support*. Please understand I am none of those things they call people like me. I am educated, objective and strong. And I am well. I am lucky, yes. But I am not superhuman. Nor am I martyr. I’m just a regular person who happens to be committed to doing everything I can to be well for as long as I can. Even if it means no pizza.

living with the invisible diagnosis

I have waited a long time to write about this. The reasons for that wait will probably become clear as I write. In part, it is because I have never (and still do not) feel as if I can articulate the issue as clearly as I would want. It is also perhaps, because I have read many other comments on this and I hate to be repetitive. I am hoping, as always, to generate thought about this and extend a hand to anyone who may have had the same experience as me.

So MS is often invisible. We know that, right? The symptoms are for many of us, particular with relapsing remitting MS, just not obvious. To enable others to ‘see’ them you have to report them. Describe them. Here’s the first issue. How do you describe them without falling back on the descriptors you have read? How do you find the words to describe a feeling or sensation that to begin with is so alien to you that you seriously think you may be imagining it. That makes you question your own sanity.

In describing it you label it. You make it real. The tricky bit is that you can’t report every tingle or sensation. Neither can you always remember to tell people when the symptom has gone away…(“oh sorry, that burning sensation stopped a week ago. Did I forget to tell you…oops! Sorry…”). And if, like me, you hate sounding like a whinger. A moaner. And you are determined your life will not become about reporting every sensation and terrain that MS takes you on. And please, dear reader do not think I am a martyr. I’m no saint. Of course, one needs to be able to disclose and discuss in order to access support. That is hugely important.

But when your body; your brain, starts to do weird things, I’m sorry but unless you say it out loud to someone you will. Slowly. Go. Mad. And so, you have to find a middle ground. I vividly remember sobbing “I do not want to be an ill person!” during my diagnosis. Later I thought – “well they may have given this a name, but perhaps I have to accept a certain level as ‘normal’ and just speak up when I’m worried…”. Some things are better left unsaid.

I have talked on this blog before about the diagnostic process and the way in which it is often managed. Clumsily. Lengthy. Without adequate support. Of course, it is often also very well supported and managed, but that is not the case for many. When I first presented I was seen as a ’hysterical woman’ (not the first time I have been called this, granted 😉 but given the nature of my symptoms it was a little ridiculous. A prolific non-attender at the GP, I rocked up with classic tingling and numbness down my right side. With supplementary symptoms over the preceding few months. “I can’t but help notice you’re upset” said the GP. “Is there anything *else* going on?”.

“umm. What aside from this stroke/brain tumour/motor neurone disease/cancer (*delete as appropriate for the thought you had) I replied. I was shocked. “is there anything else going on??”…I thought…I even racked my brains for ummm…I don’t know, a gzillionth of a second. Urgh! (my second visit I could tell the Gp was skulking about for incriminating evidence of a Conversion Disorder… pah!)

So is it any wonder I have since been left feeling as if people do not believe my symptoms. There. I’ve said it. I often feel as if I have to *prove* my diagnosis. Even to my nearest and dearest. And given my desire not to constantly describe whatever symptoms I am experiencing, or talk about MS *too* much, this creates a tension. A conflict. You may know it? It’s a bit like doing the odd cough just to show your boss you really did have a cold when you were off sick…that one.

Perhaps this reflects the process of ‘acceptance’, though I’m not sure how. Furthermore, as I feel the benefits 2 years down the line of major dietary and lifestyle changes, my symptoms become less and less and when people see how well I am, I am catapulted back to that thought: they don’t believe I was diagnosed with MS.

Perhaps it doesn’t really matter what other people think. Perhaps that’s the lesson I am supposed to learn.

MS and Depression: It’s not all in my head

Technically speaking, I doubled my chances of ‘getting’ depression when I was diagnosed with MS. 50% of people with MS will experience depression at some point, compared to about 20% of non-MSer/’others. The fact my statistics ‘technically’ changed on one day in 2012 reflects how meaningless statistics can be. At times. 50% is a pretty big number. Rarely is there any specific psychological support available for people in the UK through the NHS. You may be able to talk to your MS Nurse if you are lucky and s/he is nice and has time after providing support for the gzillion people on her caseload (shortly to double to 2 gzillion due to cuts. Obv.). Those of you close enough to travel to a MS therapy Centre, (run by volunteers) may be able to access subsidized counselling support. If you are lucky. When we consider this, the lack of awareness about the true nature of depression in MS should perhaps come as no surprise. The idea that it is ‘to be expected’  or par for the course, still seems prevalent. and who can blame people; having MS can really suck.

The thing is, depression is a tricky customer. In my experience of working with people who were clinically depressed there was usually a pretty good reason for it. A normal response to an awful situation. Like MS. Loss. Grief. Fear. Isolation.  How we cope reflects a number of things, including core aspects of our personality, coping strategies we have learned from our family and those around us and the support we have around us to help or hinder. It is informed by our ideas and beliefs about illness.  But still, EVERYONE deals with difficult stuff, right? EVERYONE has stresses and strains? So how can those of us with MS have more than twice the chance of developing depression?

The off-the-peg response is surely: “well, if you had MS you would be depressed too?”. And yes, to a degree this is true. MS can be truly horrible; especially for people with aggressive and progressive MS. It can be disabling, isolating and fill you with fear, anger and dread. It is a life changing diagnosis whatever your prognosis. Fatigue; the most common of MS symptoms can add to the isolation as well as being a symptom of depression in its own right. Health professionals need to start thinking about depression in MS more. Not least because research has shown that depression, not disability or fatigue, is the single most important factor in determining quality of life with people with MS (D’Alisa et al, 2006). Worringly, not only is depression under-diagnosed and as a result, undertreated but most frightening is that many professionals working and managing the care of people with MS don’t seem aware of this research.

When compared to other chronic diseases, depression is reported to be a specific feature of MS. What this means is that while having MS can make you feel depressed, there seems to be something specific about the disease which makes people more likely to be depressed (Even et al, 2004). In reading about this I was surprised (but not surprised) to read that even prior to diagnosis of autoimmune disorders, people reported depressed mood. So, did the person’s low mood occur before there was evidence of an inflammatory process? Was it a coincidence? Or did some sort of inflammatory process cause the mood change? It’s as if the depression acts as some sort of ‘red flag’ for a yet to be diagnosed inflammatory process. This rings true for many people I have spoken to with MS, and with other significant illnesses including cancer.

If we are to assume that health reflects the body being in ‘balance’. The house being in order. Then it is not a big stretch of imagination to think that illness is an imbalance that is reflected in a number of ways. A variety of symptoms; physical and emotional. When we consider that science now recognizes MS reflects an imbalance in the immune system. When we consider that the immune system needs a balance of Th1 (which activate the immune system) and Th2 (which dampen down the immune system) chemicals. When that balance tips, and the immune system becomes predominantly Th1 we have a problem. An inflammatory problem. Like MS.

This is all sounding familiar… It’s reminding me of the information I have read about acid V alkali foods… the impact of what we eat. It reminds me of the more widely understood evidence about the impact of stress levels on cortisol production and how that affects our brain chemistry and physical health. Things start to make sense (while still confusing my ‘Social Scientist’ brain…). Most importantly it makes the case for finding balance in our lives, our diets. In our bodies. It helps us understand why regular exercise is so important and helpful in managing chronic, autoimmune disorders, as well as depression. It reinforces emerging evidence that meditation and mindfulness have beneficial effects for a number of inflammatory disorders and work to reduce inflammation. Most concerning is that it seems that being depressed can actually worsen the physical disease. 

It demonstrates that depression is often part of MS, but that it’s not often understood or managed well. We desperately need to improve our understanding of depression in MS. We need a better response from health care providers than the one currently being offered, or we risk missing an opportunity to improve the lives of people with MS. After all, this is about more than just being a bit sad.

(I recommend Dr Patricia Farrell’s book “It’s not all in your head: anxiety, depression, mood swings & MS” for a good review of research).

Thankyou. Rest now…

In the last two weeks the world lost, I am sure, many wonderful people. Fathers, daughters, wives and friends. Many children and parents have said good bye to loved ones. Each loss heart breaking to someone somewhere. In part, we grieve for what we have lost. In part, for the life that person will never get to live. To be brave at the end is something many of us hope we can be. Fear we cannot. I know for sure, I will not be facing my final moments wishing I had owned more or worked more. The value of life is in the depth of it.

Stephen Sutton (http://magicfuture.com/wp-content/uploads/2014/03/StephensStory.pdf)  died last week. As did Polly Noble (http://pollynoble.com/about-polly-noble/). Both these losses must be such a devastating loss for their family and friends. A loss made more manageable by the number of lives they touched. The people they inspired. The insight that they shared about the opportunities that a life has, no matter how short.

I was lucky to have ‘followed’ Polly for several years on Twitter and Instagram. Stumbling across her story I was touched and motivated. I have mentioned her on this blog before. Not only did she take on Cancer, head on, she shared her story and passions with so many. Running seminars, speaking at conferences, starting businesses and fiercely living life in spite of Cancer. She opened people’s eyes to the importance of nutrition when faced with chronic or life threatening illness. She was beautiful too. She tweeted me a few weeks before her death and I felt a boost. I did not know she would be leaving so soon. She was Instagramming pictures and promoting wellbeing and a Conscious Approach to life (http://theconsciouslifeguide.com/) in her final weeks.  When I heard she had passed, like many I know, I had a little cry. I hope her family draw strength from the immensity of what she achieved. What she stood for.  Her Mission Statement: “To inspire others to live a happier and healthier life and to do everything in their power to achieve this in every moment so they can live a life they love”.

Like Polly, Stephen Sutton faced Cancer in a remarkable way. The depth of meaning he drew from facing terminal cancer is not unheard of, though I am sure is not the norm.  The fact he was only 19 when he died makes his story so moving. His intelligence and ability to beautifully articulate what he had learned and taken from it is perhaps what makes it so awe inspiring. The £3.2 million he raised for The Teenage Cancer Trust (http://www.teenagecancertrust.org/get-involved/make-a-donation/) before he died (that figure still rising) the icing on his cake. He was able to communicate to people that life should not be measure in time, but in what we achieve. he wrote:

“Imagine there is a bank account that credits your account each morning with £86,400.

It carries over no balance from day to day. Every evening, the bank deletes whatever part of the balance you failed to use during the day.

What would you do? Draw out every penny, of course!” 

Think about it for a moment. What would you do? You’d take the money out and store it somehow, right? You’d give it to someone else. You’d use it to buy something that would last until tomorrow (a fancy sports car, down payment on a house, a painting, a pony).

“Each of us has such a bank. Its name is TIME.

Every morning, it credits you with 86,400 seconds.

Every night, any of this time you have failed to invest to a good purpose, it writes off as lost.

These seconds carry over no balance.

The bank of TIME allows no over draft.

Each day it opens a new account for you.

If you fail to use the day’s deposits, the loss is yours.”

Each of us is given 86,400 seconds with which to do whatever we want, and

we’re not getting that time back.

That’s why I think it’s important to use the time we’ve got as positively and productively as possible”  #StephenSutton

So thank you Stephen and Polly. Thank you to all the Stephen and Pollys that are out there. And importantly, good luck to all the Stephen and Pollys that lie within all of us, if only we have the strength to seek them out.