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

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.

What does it all mean..?

Aside

Image

Recently I saw a friend who reminded me that there was a moment when I decided to take back some control from the illness experience. I had almost forgotten about that. It got me thinking that sure, my response to the illness was characteristically me. I spent a lot of time being scared. Worrying. Learning. And then I got tired of being scared. Tried to assume some control. Change my life in way that would give me the best chance of a good life. Of being well. Somewhere along the way I became more content with my life. My job changed. My diet changed. My lifestyle changed. I noticed I was calmer and more satisfied. My life had more meaning.

Other people noticed it too. Strangely, it unnerved a lot of them. Made them uncomfortable? I sensed that often people thought I was putting a brave face on it. I imagined them saying “poor thing. She’s almost convinced herself her life is better…such a shame”. Of course this was what I imagined… but I’m pretty sure it must have crossed some of their minds. The reality is very different. The cliché of the *journey* is alive and well. For me anyway. My experience has taken me and my partner to some dark places, and forced me to manage levels of fear and worry I thought I would never cope with. That experience in itself changes you. As does physical threat to your body. To the realisation that I am not immortal. Suddenly decision making becomes a different experience. I started to find myself fearless just as often as I would find myself terrified. Then gradually over time, there was a shift in the ratio and I became less scared. Of course being well, as I currently am, helps. But I started to notice what else helped: Taking some control. Accepting some responsibility for how this was going to pan out. Changing the things I could change. Sharing what I had learned and what had strengthened me with others.

I was reminded of the work of Victor Frankl and his writings about his experiences in a concentration camp, in his 1946 book Man’s Search for Meaning. Frankl concluded that the difference between those who had lived and those who had died came down to one thing: Meaning. He observed that those who had meaning in their lives – whether that be the desire to finish a book they were writing, or to provide for a family in the future, they were far more resilient to horrific suffering they had to endure than those who did not have such meaning.

                 “Everything can be taken from a man but one thing, the last of the

                human freedoms – to   choose one’s attitude in any given set of

                circumstances, to choose one’s own way.”

 

Research has shown that experiencing negative events may decreases your happiness but it can increase the amount of meaningyou have in life. Often people are able to find some benefit from their illness while still acknowledging the distressing side of their situation (Maerker &Zoellner, 2004). Many report their illness as a ‘gift’ that has added value and even a ‘bonus’ to their lives (Schwartzberg, 1993, 1994). Hard to imagine. And trust me, a strange and unique experience to go through…

 

Hefferon, Grealy and Mutrie (2009) reviewed 57 qualitative studies that looked at people’s experiences of and response to illness, spanning 32 years of publications. Four key themes emerged. The first was: ‘reappraisal of life and priorities’; the second, ‘trauma equals the development of self’; thirdly, ‘existential re-evaluation’; and finally ‘a new awareness of the body’. The authors argue that the study highlighted a novel element to the process of post-traumatic growth in physically traumatic situations such as acute or chronic illness. It seemed that the process of post traumatic growth is in some ways a response to threat: in this case, losing physical stability and then ‘rehumanizing’ oneself (Salick & Auerbach, 2006) through the reconnection with the body.

 

This really resonates with me. The threat to my body forced me to not only acknowledge my mortality, but helped me to trust that some benefit could be gained from treating it with better care. Nourishing it. To consider the possibilities of nutritional medicine. The mind-body connection. The experience of illness forced me back to engaging not just with my body but with life in a different way. In doing that I found different meanings in my life. It gave me courage to take a few chances. To engage with my body and spirit again. To explore and question ideas and opportunities. To rise up to the challenge. Alongside my family and friends, the meaning and purpose I am started to experience as a result of engaging with myself, my new challenges and with you (dear reader ;) is inspiring me. I really like my new life. I think I like it more than the old one. If you think “poor thing. She’s almost convinced herself her life is better…such a shame” then that’s cool. But I know.

 

<p"If there is meaning in life at all then there must be meaning in suffering”<Frankl

 

 

 

 

 

 

 

 

For my children…

I was asked to write a guest post (re-blogged below) for the lovely www.stumblinginflats.com. Do take at look at her site. She connects with many other MS bloggers/survivors and is keen to network with others. Thanks to her for the guest blog opportunity. I decided to write about something that is a little unspoken for many of us mums whose lives have been touched by MS.

 

Anyone who has been diagnosed with MS knows this is big. The implications of your diagnosis for your children are huge, though in many respects are as yet unknown. Like so much about this condition, you are left with a cloud of uncertainty under which you must continue to raise your precious loves.  Like me I am sure many of you read the information and depending on what and where you read it, it will mean different things. At the very least your kids are a lot more likely to get MS than a kid whose parent doesn’t have MS. 20 -40 times more likely than someone who doesn’t have a parent with MS. Shit.  

I had unknowingly passed on my blue eyes, a love of musicals and a genetic vulnerability to MS.

 I spent a lot of time feeling guilty about this. When I didn’t feel guilty I felt terrified. Then sad. Then a bit angry. Then sad. You get the idea… What I have learned this year though, and New Year seems a good time to reflect, is that remaining in the sad/angry/guilty ‘fug’ was not going to help my kids.

So. I began to think how I would want them to respond to their MS if it did become a reality for them. Just thinking like that was a pretty painful process, as you can imagine. But once I started it became quite clear.

Their response to it would undoubtedly be informed by their mother’s response to it. By the extent to which they saw their mother fight for her health. By the extent to which they saw MS dictate to her what she could and could not do. By how strong she was. I would want them to think “well, it never stopped Mum doing anything” and then bugger off and climb Kilimanjaro or something equally wonderful and exciting. Because that is what I want for my kids. The same as any other parent. I want their life to be wonderful, adventurous and exciting. Happy and healthy. Full of love.  I want them to be able to ‘dare greatly’ because they feel strong and fearless. Because they know they are loved.

For them to do this, I need to live my life fearlessly. I need to be strong, happy and to love them and my life fully in spite of its challenges. I can make a practical impact on their views about food, what they eat, if they exercise and how they can live an optimally healthy life. Above all though, I do not want them to feel afraid if MS comes into their life. Into their brain. When I began to think in this way I was flooded with a new energy to face the future. It all began to seem quite simple. I am doing it all, for them.

 

The way I see it…

As a psychologist I am fascinated by people’s behaviour. Their thoughts, feelings and behaviour. The way in which they experience the world, or respond to it. Being diagnosed with MS I found myself playing a central role in a play I had been reading about for many years. I am learning all the time and piecing together the puzzle. Remembering things I knew. Rediscovering information I once learned. Really understanding information I thought I understood…but viewing it from a new position gives it a different depth and urgency.  A new clarity. It is proving helpful to me in my recovery and in my work and I want to share it with you.

Having researched the psychology of health in the past the concept of individual’s Illness Perceptions is not new to me. Nor is the concept new to social scientists. In many ways it is the science to explain common-sense processes that many of us are aware of. The idiosyncratic way we respond to health ‘threats’. In general, our illness perceptions emerge out of our beliefs about illness and what illness means for us in the context of our lives. So that’s no surprise, right? What is significant though is how they seem to play a role in health outcomes and recovery.

In Current Directions in Psychological Science (Feb 2012) Petrie (University of Auckland) and Weinman (Institute of Psychiatry, King’s College London) reviewed the extensive evidence regarding this and demonstrated that people’s illness perceptions bear a direct relationship  to important health outcomes, including the individual’s level of functioning and ability, health care use, treatment adherence and even *gulp* overall mortality (http://cdp.sagepub.com/content/21/1/60.short).

How this occurs is what is interesting. What seems to happen is that when faced with ‘illness’ we develop a set of beliefs or ‘ideas’ about it. Of course, these are influenced by many things such as our previous experience of that illness, personality variables such as optimism/pessimism, social support and many other factors. All of these things as you can imagine, affect how we respond to the illness or diagnosis. Research has consistently shown there is a pattern to the way we do this which includes our ideas about the illness identity, ideas about what caused it, ideas about control or cure and the consequences it will have on our life.

There are a growing number of studies that show that if individuals hold a generally negative view of their illness –for example, attribute a large number of symptoms to it and predict more severe consequences, then their health outcomes tend to be worse. It is associated with increased risk of disability. And slower recovery. And what makes this evidence so convincing is that it seems to occur independent of the severity of the condition.  (Botha et al, 2006; Scharloo et al, 2000; Scharloo et al, 1999).

So as a patient looking for a way forward, and as a psychologist looking for ways to improve health outcomes this represents a massive opportunity. By influencing peoples’ perceptions or ‘ideas’ about their illness early on, there really could be an opportunity to improve their health.  This has already been demonstrated to be effective in conditions such as heart attack (Petrie et al, 2002) and fatigue management in MS (Skerrett & Moss-Morris, 2006).

This is not the same as saying ‘Mind over Matter’. I do not suggest we can think ourselves better. I would not patronise you so. The process is more complex than that. What this highlights is that there is an opportunity, perhaps during and after diagnosis (which is a scary process often handled by medicine in a clumsy way). An opportunity to influence how people regard the illness. In doing so, it may well impact their future.

 

what have I gained from this…?

I’m reflecting on a year since diagnosis. Eighteen months since the first big episode of illness. Celebrating 18 months of no *relapse*. Wondering how I get where I am today – hopeful, healthy, fit. I do not feel that I have lost anything of that much importance, although the process has been hugely difficult at times. I’m wondering how this post can be helpful to people newly diagnosed with relapsing remitting MS and what I wish I could have heard about when I was first unwell.

The gifts this year has given me are:

Strength: There’s an English proverb; ‘a smooth sea never made a skilled sailor’ which I thought about more than once this year. I have compared myself to many in positions far worse than my own too. I have survived something pretty scary, but so far it has by no means been unbearable. A good friend and I navigated our ‘choppy’ waters in parallel (her storm was divorce with young children) and we supported each other. Her strength gave me strength, and I hope it worked both ways. One day I remember her saying to me, “this is *not* the worse thing that can happen to me” and she was so right. For both of our situations. That is why neither of us became wallowing messes of self-pity. She, perhaps before me, knew she would get strong. Move on. Which brings me to my next point,

The Sisterhood: I knew this before but I never really felt the force of it so much as this year. I’m guessing men may have their own equivalent (the brotherhood of man..?) about which I cannot comment, but I feel confidant The Sisterhood would still reign supreme. Although I am obviously biased. Friends have been there for me when I did and didn’t want to talk. They have played it my way when I so needed them to. When you wanted to see them but no-one else you know, for example, setting up co-vert meetings in random places so we wouldn’t bump into “someone we knew”. Taking the mick when I needed them too (“c’mon then. Right… We’re gonna do a bloody fun run… DIY SOS, that’s what we need!! *hic*) and having their own wonderful, chaotic and real lives to sweep me along with – weddings, babies and problems. The Sisterhood will always be there for me. They will help me deal with whatever. We will face it together. We are family (I got all my sisters with me). That message has been so loud and clear, and those sisters of mine will never know the strength it has given me.

A new career: Out of the above I was able to look at my life and see what needed to change. What was going to give me the best possible chance at being well. Being in a highly stressful job where absorbing other people’s pain (I was a mental health professional) did not seem like my best chance at keeping well. But I loved my job in so many ways. The strength and perspective this experience has given me enabled me to think differently about a way out. A way *forward*. By keeping “pushing doors” (thanks Ana) and having faith (thanks George) I ended up doing something I would never have had the courage to do before. I took a risky step of leaving a secure & senior position to go into research. It enables me to use all my experience and skills in a different forum. It enables me to work from home. It has allowed me to feel passionate about my work again. Without this experience I would never have done it. Simple as that.

Wellness: Being unwell is a good reason to start to do what you need to be well. Silly really, ‘cos if we did that before we might not be unwell. It has lead me to thinking about what I put in mine and my children’s body so much more – food, toxins. I see much clearer the correlation of the increases in disease of the Western world and the foods we eat & the way we live our lives. Our busy, busy lives. Where at times, it can feel like we literally. Cannot. Breathe. By seeing this I am making different choices, because I cannot *afford* to be unwell. I do not mean *afford* in financial terms, I mean that if I am unwell and relapse there is always the chance I will not recover entirely from that relapse. I cannot *afford* to eat crap. I cannot *afford* to skip my exercise. My yoga. So doing all I can to be well is how I live. In the words of Jim Rohn “your life does not get better by chance, it gets better by change“. By making my wellness a priority I have gained so much, not least a fitter, leaner body ;-) but a healthier way of living. One that my children see and the legacy of which I hope protects and nurtures them and their future. That has to be the greatest gift any parent can give.

So while it seems like a cliché, and if you are reading this and you are in a dark time, I urge you to hang in there. I did not think I would be where I am now, doing what I am doing, writing what I am writing. My life is far, far from perfect. I have the same struggles and heartaches as you all. I am sure there will be many more ‘storms’ ahead for me to navigate. But I think it’s going to be okay.

 

how to survive the first year…

Now I feel I have a licence to talk. Its officially one year since NO MAJOR RELAPSE. A huge marker for me. I remember saying to a lot of people that when I got here, I would feel braver and stronger. And I do.

There have been a million different factors that have contributed, and forgive me if I keep things positive here. Of course the dark times have been pretty freaking dark…but today I’m going to share how I have come through my first year post-diagnosis feeling healthier and happy (most of the time ;-)) and give my tips for overcoming MS (at best) and feeling in control of your life (at least; both of which some research tells us can make as much difference as drug treatment)

1) Food: change your diet. Swanks work which started in the 1940’s pioneered dietary change to manage and overcome MS. When you see the evidence gathered prospectively over 50 years you will be convinced. Swank concluded that if people with MS can rigorously follow a low saturated fat diet, with no more than 10-15 grams of fat per day, they can expect to “survive and be ambulant and otherwise normal to an advanced age”. In a nutshell – don’t eat dairy, meat, processed food. Eat lots of fish (anti-inflammatory), vegetables, fruits and superfoods like kale, spinach, ginger, turmeric. Avoid gluten. Make the change slowly over a month and make sure you get enough protein (lentils, beans etc) & calcium. Do not take a multi-vit. After a year on the new diet my friends, family & colleagues are (I kid you not) really amazed by how well I look. My eyes have got their sparkle back ;-)

2) Vitamin D: get your vitamin D level tested. Studies show that people with MS should keep their Vitamin D at around 150nmol/L (check the measure differs between US, UK & Aus). Take a Vitamin D supplement, and bear in the mind that government recommended levels are way too low, even for the general population. Do your research and find good advice at wwww.overcomingmultiplesclerosis.org, especially if you have children who you may want to supplement too as a preventative measure. It is not uncommon to hear people with MS talk about how their Neurologist told them they give Vitamin D supplements to their own children…

3) Exercise: be it moderate, minimal or most exhausting, find your thing. Depending on the level of your difficulties or fitness. Try and exercise everyday, even if that is simply the big hill on the school run, taking the stairs at work or regular swim or gym with friends, signing up to the Breast Cancer 5K. The stronger you are to fight this, the better. It has the added bonus of a great buzz when your release all those feel good hormones, not to mention when your body starts to look pretty toned.

4) Do yoga: This will help you in a multitude of ways. Yogi science approaches mind and body as one. Asanas & postures work specific parts of the body to relax and calm them, activating your vital organs with fresh blood to the brain. Yoga stems feelings of pain, fatigue, despair & makes you more agile. Calmer. Chances are you will join a group of like-minded people which in itself brings benefits and supports you in the changes you are making. It helps you meditate…

5) Meditate: Start small. If you have a buzzy mind (like me) try and introduce small amounts of stillness in your day. Download the mindfulness Bell App on your phone (yes, really). (Better still turn your phone off). It will chime at intervals and help you stop, take a moment, focus on what you are doing, with who. Buy a meditation CD and listen to it as often as you can. If you find it hard seek support online, or sign up to a meditation course like those offered at http://www.bristol-buddhist-centre.org. Read about Mindfulness & practice it. At minimum keep a journal of your feelings. Write a blog…

6) Talk to like minded people: You need to do this in your own time. Email that friend that *your friend* told you about (“she’s got MS too”) if you want. Chat on a forum at the MS Society, or on http://www.shift.ms which is a great website for young MSers to meet and share experiences. Ladies, please explore Kim Austin’s amazing website http://www.msdietforwomen.com and I dare you not be impressed and motivated. Draw on the experiences of others and be inspired by people like Polly Noble who has twice been diagnosed with Cancer but is FIERCE in the face of it, responding with a Raw diet and determination to live. See her at http://www.pollynoble.com.

7) Decide: Make a decision to be well. Do whatever you can to be well. And live it as much as you can.

If you are someone, or know someone who might find this helpful. Please share it. Thanks for reading.
Live well.