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.

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4 thoughts on “Lessons learned – 3 years on

  1. Hi! I just came across your blog. Thanks for sharing your story. My husband was just diagnosed in April 2015. Any chance you can point me to some resources on bipolar & MS info? Diet & exercise have been easy changes for us (so far at least), but meditation and stress reduction will be the challenge. Thanks for this post, I will continue to follow 🙂

  2. Hi,
    so glad you came across the blog. I hope your husband, and you are doing ok. It’s a difficult time shortly after diagnosis and support isn’t always forthcoming. I hope you have managed to find resources such as the Overcoming MS website/book, which I found hugely hopeful and enabled me to feel I had some control over the progression of the MS. Its positive to hear about the changes you have already made so I assume you are taking the same approach to managing it that I did; good for him! Sadly, there is very little research about bipolar and MS. WE know that prevalence is 13% in MS, compared to less than 5% in people without MS. We really need some large scale studies to understand more about this and how it links to the onset of MS. There’s some good summaries here: http://www.mstrust.org.uk/research/updates/articles/update131209.jsp#item01
    https://www.aan.com/Guidelines/Home/GetGuidelineContent/630
    But utilising stress reduction and having more ‘balance’ in your life between the busy and the calm times will always help with any mood disorder, including bipolar.

    I too struggle with meditation and stress reduction…Its my Achilles heel. (part of the problem, heh?). Often people diagnosed with MS are ‘busy’, professional people and so find this part of the change most difficult. I try and use the Headspace app (you can buddy up with people on there too), and i alternate to other apps that I search for every now and then, and listening to a CD is helpful too. I think it’s best to start small if you struggle with it, other wise it can do your head in!!. If its completely new to him, it may be worth finding out about a mindfulness or meditation introductory course to begin. For some people, finding other mindful activities is the best way forward. Hiking, Drawing, for example help lots of people switch off. Find what works for him, and you. My go to is Yoga. I prefer to be physical and so it suits me in this way and often classes end with guided meditation. I really notice when i miss my classes. Tai chi is another regarded as being helpful for people with MS. Stress reduction is tough to incorporate into our busy lives. I changed my job and was lucky enough to be able to do that. But you do have to have support, and be brave! It can feel like a leap of faith – but I didn’t feel I had any other choice personally. I would recommend the ‘Recovering from MS- real life stories’ by Jelinek & Law (http://www.amazon.co.uk/Recovering-Multiple-Sclerosis-Stories-) as this gives real life examples of how people make it work for them and their lives. Inspiration/dp/1743313810 )

    LEt me know yhow you get on and thanks for you comments. I hope you husband is well and feels empowered by all the changes he sound slike he’s making. The fact he has your support means a huge amount when facing MS, I’m sure. All the best and be well.

  3. Thanks for your response! He’s having a hard time feeling in control, but I’m sure that will improve with time. I am setting him up on the headspace app now and ordering the book. I’ve had pretty good success with walking meditation, but my husband is too busy to walk and it can be frustrating if he tires or fumbles. He’s a musician and sometimes finds relief in that, but it too can be frustrating depending on how well his hands are working that day. Yoga & tai chi are also great recommendations. I think he just doesn’t know where to start, so I’m trying my best to learn meditation techniques and share with him to get the ball rolling. I’ve started thinking of the brain like a muscle that you need to train. Anyway, I really appreciate your response and look forward to future posts. Thanks!

  4. Im hoping that when he reads the books he will see that the busyness and stress is a big part of what has to change. I am sure the books and stories will demonstrate why and how to go about it. Small changes add up to big results it just takes TIME. So you have to be patient but keep faith, and keep pushing . There are many changes you can make to manage the symptoms, slow progression and feel more in control.
    Keep us posted on how things are going.

    P.s. Theres an old zen saying something like, you shoukd sit in meditation for 20 minutes everyday . But if your too busy you should sit for an hour! I like that!

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