False Hope: Is it really possible?

I wanted to re-blog this post from ‘Posts of hynpnotic suggestion’. It articulates so well something I often struggle to find words for. so thankyou Tony..

False Hope: Is it really possible?.

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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.

approaching 1 year…

It’s been a while. Not even sure if anyone is even out there…

In May it will be one year since my first ‘Big’ episode. I cannot believe all of what has happened in such a short space of time. How much my life has changed/not changed. So where am I? Well. I guess technically I am well. And to most around me I am, well. As anyone reading this with MS knows you couldn’t possibly tell your loved ones about every nebulous, slightly scary sensory ‘symptom’ you have… I tend to quietly freak out about it before mentioning it to my significant other. I need to be sure a) it’s really happening, b) it’s related to the MS and c) already have a solution/reassurance ready for them. Of course, when I was first unwell and pretty much steadily until diagnosis I did share more – cos I was terrified. Now it feels the same but different.

I wonder if people out there, with MS remember this first year… I have a feeling you might!!? Its supposed to be most difficult year; so I am told. Adjusting. Accepting. Working it out. While riding the wave of random symptoms and lots of pennies dropping (“so that’s what the exhaustion/tingling/sore skin was…!”) . What I have struggled with most recently is knowing when to be worried. And when what I am experiencing is *just par for the course*. So. Recently I have been getting wierd stuff happening with my hand. And in the last few days my eye. Its always when I wake. Having never really had a conversation with a *real* (as oppose) to an online person about MS symptoms I am left unsure about how worried I should be. SHIT! Do I need ot start medicaiton? what is my body telling me? Is this normal? Is this what it’s like to have MS – chugging along and then you get wierd stuff happening to you randomly..? I frantically dial my MS Nurse (who I have neve rmet). She assures me this is, yes, par for the course. She’s sympathetic. Nice. I feel a bit calmer but sad 😦

I would love to hear peoples thoughts on this. It scares me. Mainly ‘cos it challenges my belief that I am going to be one of the well ones. Benign. Symptoms contradict that… I try and take reassurance that often improvements attributed to the diet and regime I am following can take several years. Perhaps I am living the improvements right now? Perhaps things would be worse for me if I hadn’t made the drastic changes I did. I take reassurance in the fact I am approaching 1 year without a major ‘relapse’.  I take heart in the fact that already this diagnosis has given me many positive lessons, about myself and others. About peoples strength and their kindness.

here’s the thing about being positive…

Here’s the thing. I have learned that despite my best efforts to convince myself and others of something different; I have, in the past, been judgemental of others. Critical. Probably a bit patronising too. Not all the time. Most of the time I have been true to my liberal and inclusive, anti-discriminatory ideals. But if we are all being completely honest, we think bad thoughts about others all the time!

since my diagnosis it has made me confront a lot of that. being on receiving end of it is a pretty good wake up call. Today I was totally naffed off by a colleague. A friend I guess, after 8 years of working closely together. She decided to have a “chat” with me. Perhaps she thought it more of a ‘pep’ talk. Because you see until now I have never had the “you just have to be positive” /”if you look after yourself there’s no reason it should effect your life too much” conversation.

“OHHHHHHHHHHHH Reeeally!” I *wanted* to say. “I had no idea living with this condition and adjusting to the uncertainty of living with such a diagnosis was…well, so….ummm. SIMPLE?”. I didn’t realise  that if I cross my fingers and smile I can carry on with life as…NORMAL!?!”  And reader I know, yes it’s ignorance but it really was annoying. At some point I realised she wasn’t listening to me. She was sort of looking past me to a different conversation – the one she would be much more comfortable having.

I have given it thought and while i know she was well meaning, and there is *some* truth in what she was saying it dismissed my experience. Sweeping it off the table as if to say”moving on…”

I have witnessed this kind of thing before. We all have. For me particularly in my work I see professionals at time conduct themselves in a similar way when faced with something too painful to fully comprehend. I have seen family & friends do it to me, or to others when they have lost a loved one, their husbands left them or their child is unwell.

To really face something is to bring it into you consciousness and that is upsetting. To think, “there by the grace of God go I” is difficult for people. It brings terrifying thoughts and feelings into the realms of their reality. Almost as if, by being close to them they could ‘catch’ the bad news.  

When I was in the diagnostic process which lasted for many months, I was acutely aware that I was in a suspended reality. I was sitting on the line between diagnosis and no diagnosis. It could be fine, or my life could completely change. And no matter what people say to me, it has completely changed. While I may not be unwell at the moment, and there may be no “reason” you can see for me not to return to my old life – in other ways *everything* has changed because I have changed. Faced with this, what I want has come into focus more. The clock is ticking quicker. Louder.

I am determined my diagnosis will make my life richer. Better. And the lives of of my children. So you see, I am being positive. Really flippin’ positive – it just looks and feels a bit different to what other people want it to.

cardigans can be very tricky.

what nobody tells you is the absurd situations you find yourself in…and I’m not simply talking about the MRI scanner or “spitfire” as my dear old Dad called it after his little jolly in one. Most endearing is the way my dear old Dad keeps calling ‘it’ M & S. Like the shop. He’s not even joking he just gets things a bit mixed up sometimes.. (insert your own M & S gag here. My favourite is “it’s not just any neurological condition, it’s a M & S neurological condition..”)

More recently as I left a post-diagnosis counselling session I thanked the counsellor so enthusiastically for her time. Not only had she been empathic, supportive and let me share unconditionally but she had also let me go verbally ‘crazy’ with a) my story b) my fears and c) any other thing that was vaguely connected to how I was feeling at any one time. I was so grateful for that hour with her. She will probably never know how much so. To be able to share without feeling one should protect another is priceless. However, I think my actions as I left may have undermined (or possibly emphasized??) just how much I *needed* that hour…

As I left, thanking her (bowing slightly?) I told her to please forgive me if I ever called her ‘Claire’ as I knew her name was ‘Sarah ‘. As she assured me her name was definitely Sarah I thanked her again whilst faffing with my cardigan and putting it on not only inside out but upside down (Yes. This is actually possible). It is possibly testament to Sarah/Claire that I did not feel too embarrassed by this. I did feel slightly embarrassed a few weeks later however when seeing my Specialist. I felt embarrassed for him. At one point I obviously looked a bit tearful and it happened to be one of the handful of moments Doc gave me eye-contact (#missedthebedsidemannertrainingatmedschool). He looked very panicked, asked gruffly “are you alright?” and looked furtively around for a nurse or someone who may be able to help deal with this show of emotion. Very different to the welcome I had at my local MS therapy centre.

It seems feeble to say now how important the work of these volunteer run centres is. It is for many people pretty much the *only* support they get when facing MS. So, if you have a diagnosis of MS put “MS therapy centre” or something like that in your search engine because you may find a huge amount of support that you may not find out about from your GP or Specialist. My local centre is run entirely on fundraising, membership ‘fees’ and donations. It is run by volunteers (many with MS) but do not let that put you off or think it’s anything other than a hugely professional set-up.  It offers a wide range of therapies including physiotherapy, acupuncture, oxygen therapy, counselling & reiki at heavily subsidised ‘donation’ prices (I paid a £10 for my counselling session). Most importantly it provides a place where you can know that people really understand how you are feeling. Visiting the centre was a massive step psychologically for me toward coming to terms with my diagnosis. It was also very moving to be welcomed so warmly and to meet people who might *actually* have a sense of what you are going through. And anywhere you can be a rambling weirdo with your cardigan on back to front and inside out and still feel okay, is getting something right. 😉

shedding an old skin

while some days I am so strong, other days  I do not know who I am anymore. So much of what I thought was certain about myself seems to have changed. My profession and my beliefs led me to value the psychological , and here I am a victim of simple biological processes. I am feeling a little lost.

Day to day life goes on. Buying school uniform, new shoes, football club drops offs need to be done. My kids friends come to tea. My friends get married. Children ground you in an amazing way, but man can family life test you… Trying to ‘juggle’ has taken on a new meaning and I am beginning to wonder how I will ever manage to get back to work and manage all this. And them. Something that’s a difficult thought when you have spent a decade studying and qualifying, and then almost another decade pursuing that career. A career that focussed on helping others. The futility is, at times, striking.

Dedicating time to my new study – understanding MS and finding ways to overcome it has been helpful. I am hugely encouraged by George Jelinek’s work at  www.overcomingmultiplesclerosis.org and his best selling book. A highly accredited and distinguised medic, researcher and MS survivor he offers hope where mainstream medicine gives little. I am familiar in my professional life with drug companies often questionable motives and find it little wonder that there is little interest in the good evidence for changes in diet and supplements of fish oils, omega 3 and vitamin D3… not much money in these natural substances maybe?

At other times, in these early days, just the fact that support and hope can only be found across the internet and through a faceless forum of people I have never, and am never likely to meet is bitter sweet. A reminder that some good friends have failed to reply to my last email confirming my MS diagnosis. To feel truly alone is to face something like this. That is not to deny the support from some hugely important people who will never truly know how much it has meant.

So it looks like ages 36+ for me will provide me with challenges anew. I feel as if I’m shedding a skin but have not grown my new one. One thing i know is my most important job is being Mum. So i need to find a way to be (the new) me.