The View From Here: Life Lessons After 24 Years With MS

May 31, 2018

alison potts meditation

 

World MS Day is always a time for me to get reflective, get grateful and get wise to what has brought me so much value over the 24 years since I took up the challenge of making my journey with chronic illness a story of health, learning and gaining freedom from old habits, rather than one of struggle and despair.

I value this day as a landmark in the ongoing valuable developments in my health and personal life.

I also see it as a look-out point from which to observe and celebrate the many, many milestones in prevention, research and treatments for MS – like the OMS Recovery Program – that have emerged since the time when I was diagnosed and so little was known.

When I was diagnosed in the mid-90s, there was a ‘there is nothing that can be done’ attitude.

The neurologists I saw at that time uttered phrases like, “Enjoy your health while you have it” and “Come back when you get a new symptom.”

I remember asking about my career – would I be able to keep it? And starting a family? The answer always came back, “Maybe, maybe not. Don’t rush into anything. See how things develop.”

With no Dr Google to offer me advice (the internet was in its earliest days), I took to the public library where a medical encyclopedia gave me the darkest visual of my potential future.

I had no desire to give up on my dreams of work, family and the full adventure of life.

Thankfully, though there have been times of tremendous struggle in my past as I learned to navigate life with such a volatile illness, I achieved everything I hoped to in my life and far more.

Strange as it may be to read this, I give a large part of the credit for this to my journey with MS.

I want to share with you some of the valuable and life-enhancing lessons that working positively, proactively  and holistically with my MS has given me.

If you are reading this and are recently diagnosed, perhaps you might find encouragement and personal empowerment for the journey ahead of you.


 

“With no one and nothing I could contract out my healing to, I had to step up and start developing a whole new world of self-care and self-awareness that I had previously, and to my peril, not paid attention to.”

 


Illness is an Opportunity

I had an epiphany as the neurologist delivered the news of my MS.

In that moment, I had a visceral experience of the world becoming more vivid and more precious than ever. Despite feeling so ill and exhausted, I had never cherished life so deeply.

Sitting there, I felt a flame inside me ignite – I wanted not only to manage, but to thrive and to have vitality.

This core intention has pulsed in me ever since and guided me to pursue a far healthier and more rewarding life than I believe I ever would have done without MS.

I’ll always be grateful that despite feeling so physically weak, this strong voice in me came through, insisting this illness could be an opportunity rather than an obstacle.

This served me particularly well when I felt almost defeated by the mind-boggling unpredictable nature of life and a body with MS.

 

 

Falling Back On Your Own Resources is a Positive Thing (Because You Are Resourced)

It may sound strange but the fact that there was no information or guidance when I was diagnosed was the best thing that could have happened to me.

With no one and nothing I could contract out my healing to, I had to step up and start developing a whole new world of self-care and self-awareness that I had previously, and to my peril, not paid attention to.

The lessons we need to learn about self-care and self-love aren’t ones that can be taught by a class or a book.

We hold them within ourselves and MS gave me the push I needed to look inside.

I took an inside-out approach to my understanding my body. Even with damage in our systems, we are resourced with such intelligent bodies.

I have had to develop a very refined degree of self-sensitivity and it is one of my greatest allies.

I am forever learning from my senses and sensations, from my emotions and from all the different ways clues and messages come through to me as to what my body needs in the moment and what it doesn’t.

We have a whole mind body system which communicates with us all the time and has valuable knowledge and direction for us.

It is absolutely a blessing that so much progress has been made towards prevention and treatment of MS and that there is so much support and resources, but being in touch with yourself and listening to your own body remains as crucial.

The Foundation of Healing Is Self-Love

It took me a while to learn this one, but caring for yourself is not the same as caring about yourself and the latter is what makes all the difference.

Just after I was diagnosed I read a brilliant book called Multiple Sclerosis: The Self Help Guide by Judy Graham.

Like me, Judy worked for the BBC. She had a child – something I dearly wanted.

alison potts

Also, like me, she wouldn’t accept the “there is nothing we can do for you,” verbiage as a reason to abandon all future plans.

She had used her investigative skills as a journalist to gather together all the research she could on diet and natural healing approaches to MS.

Several of these overlap with those of the OMS Recovery Program and were backed by convincingly robust science. I immediately incorporated these into my life and very quickly saw an upgrade in health and function which granted me amazing optimism.

And then something happened and I seemed to go back to ground zero. Over the months and years, this kept happening: I’d get to a stage of wellness and energy, and then crash again and relapse.

The medics justified this as the pattern of a relapsing-remitting condition.

It took me a while to realize that eating well, exercising, resting and meditating are all merely band-aids without a continuous current of self -love and self -worth to infuse them.

Learning to care about ourselves may be a bigger undertaking than looking after our dietary needs and rest, but it has the biggest rewards.

Take the journey. That’s where my most dramatic changes and recoveries have come from.


 

“I was only in my twenties when I was given the opportunity to heal the most important relationship with my life – that which I have with my own body and being. For that I am deeply grateful.”

 


You can change life-long habits

When the stakes are high, sometimes those things we ignore or that have become automatic come right under the spotlight and ask us to dig deep and strike a new course.

I was diagnosed after an MRI was ordered to investigate a range of debilitating symptoms that I had been increasingly experiencing. These included an optic neuritis attack that left me partially blind in one eye temporarily.

It had taken me a whole day to see a doctor after I woke up with my eye in that condition.

If I told you that this was because I had too much work to do, if I told you that I would blame myself for being so fatigued and shaky because other people in their twenties were coping perfectly well, if I told you that I spent that 45 minutes in the MRI machine giving thanks for having been gifted with the permission to rest, you’ll get a glimpse into my world of over-striving and valuing myself by how hard I pushed myself.

I was only in my twenties when I was given the opportunity to heal the most important relationship with my life – that which I have with my own body and being. For that I am deeply grateful.

My life could have followed another course altogether. As I began to learn the skill of nurturing rather than pushing myself, a new pathway to well-being opened up for me that has been life changing on every level.

MS is not the enemy

I deeply respect my nervous system. I understand it has a vulnerability and I honor that vulnerability by remaining sensitive and aware. I am peaceful with this communication between myself and my nervous system.

Our nervous systems are indeed our mind-body systems. They are there to connect us to ourselves and our thriving.

If I make MS an enemy then I am making my own body and my own life an enemy, because MS is in my body and it is in my life.

Seeing MS as something to be fought sets up an inner war zone. I certainly don’t have the energy to invest in battling with myself and my life every day.

Alison Potts Happy Tshirt - 300x418

My body responds positively to respect and deep listening and to nurture – to my meeting my needs and desires in wise and loving ways.

All our bodies work that way, whether they have an illness or not.

To see MS as the enemy is to reject all the signs and signals from my nervous system that can lead me toward what will nourish it and away from what won’t.

Habits like those I described above were sabotaging my inner peace and ability to be well.

Far from being my enemy, MS was my ally, demanding me to commit, not only to my physical health, but to my whole being mentally and emotionally too.

Becoming someone who values and respects herself deeply has brought me a level of emotional freedom and access to ease and joy my body was literally aching for.

It is therefore not surprising to me in the least to know that lesions in my nervous system have become inactive or even disappeared since I granted myself those healing gifts.

I refuse to make any part of me an enemy because I refuse to sabotage my opportunity to thrive and to sacrifice my peaceful and vibrant inner life.


 

“We are full of light. Sometimes we get to see that most when it shines in dark places.”

 


There Is Always More Within You Than You Know

We often think we have the perfect picture of ourselves when it is only just a snapshot of all we are. Then we base our view of ourselves and what we can handle on that tiny frame.

With MS, I have walked through fire many times I have been astounded by what I have discovered within me as a result.

Courage, the ability to be flexible, access to choices and a degree of self-determination I never knew I could make, the power to say no, varieties of self healing, inner strength, compassion and confidence in crises and in the face of challenge are but a fee examples. And also lightheartedness, cheerfulness and a powerful inner joy that sustains me and has sustained others.

We are full of light. Sometimes we get to see that most when it shines in dark places.

 

smartphone

 

We Are Not Meant To Be ‘On’ All The Time

Our bodies are built for action and productivity and they are also built for rest and healing. A healthy person who is thriving collaborates with these two actions of the mind-body system by taking breaks and valuing relaxation and pleasure.

Busy lives and the proliferation of digital media which flows out continuous information, and phones which lead people to think they have to be available and responsive at all times, are challenging the access our bodies have to this flow of inner rest-repair and healing.

Sensory hangovers from an overstimulated system is a real thing and people with vulnerable nervous systems needs to be particularly mindful of this. We haven’t the stamina to be on such continual high alert.

Even though I wasn’t yet using the internet or a mobile phone, as a young person with MS I too was mostly ‘on’.

I would sacrifice rest and relaxation until MS fatigue removed the choice from me and even then, though I rested, it took me years to cultivate deep habits of relaxation and ease. My mantra in those days was ‘get it done, get it done, get it done.’

I often postponed taking a break until I felt I had earned it, which was almost never during a normal day.

Like so many, I had become sucked into the sense that my personal value rested on achievement and that the number of tasks I achieved bore direct relationship with how much I was worthy of being alive.

It is interesting reading some of the research on the kind of personalities that are statistically more likely to get auto-immune and inflammatory conditions and diseases characterized by chronic fatigue.

The best advice I have ever been given (and also the most challenging) was to cultivate a path of ease, to increase pleasure and to re-familiarize my body with relaxation the way we re-familiarize ourselves with strong muscles – by practicing again and again and again.

People often comment on how productive and energized I am, especially considering I have an energy-limiting condition.

I have my own business now and am busier and more productive than ever. I am also diligent in how I use my time. I don’t just give myself to everyone and everything as if I have an endless amount of fuel.

I value time with my family, my closest friends. Time alone has become standard and vital, not an optional extra where it can be fitted in.

I relax and treat myself to breaks, luxury and pleasure on a regular basis throughout my day.

This is the best change I have ever made in my life. I am collaborating with my body’s natural healing rhythm and it is rewarding me with vibrant life.

Not Everyone Will Understand And That’s Okay

A feature of MS is that so much of our suffering and disabilities are invisible to the naked eye and this often causes further suffering.

It is no wonder that people become so angry and frustrated about lack of understanding and empathy.

I used to put a lot of energy into over-explaining to people or into getting angry about being misunderstood.

But my energy is limited and precious and I want to preserve it for more worthwhile things.

I have also taken a step back and wondered if it is right to get so angry about what people cannot see and maybe can’t completely understand.

Do you know fully what every person around you is feeling or going through?

I have never had cancer but several of my friends have. I can’t pretend to know what having cancer and chemo feels like. I can ask and I can offer support if needed.

But I can’t really know or understand. It is up to us to help people understand, if that is what we want.

It is up to us to explain what we need and don’t need. I still don’t blame people for not knowing quite how to respond.

I have learned to choose my battles and my boundaries.

What to me is an inviolable boundary, is being believed. Once someone has told you they are not feeling well, no one has a right to push them into saying yes to an invitation or volunteering for something. No one has a right to act in any way that hints at not taking them seriously.

I have a tribe of allies – people I am there for and who are there for me. We love and respect each other.

I write and I use my voice to spread awareness and cultivate compassion. I try to treat others with that same awareness and compassion because everyone is going through something at some time.

But in those who judge books by covers or won’t believe what they cannot see in their own framework, I don’t waste my energy investing. I’m truly okay with some people not understanding.

 

letting go quote

 

Is This Worth It? Is a Great Mantra

For everyone, there are things in life which are nourishing and fulfilling and things which are depleting and draining. Many people find themselves in a rhythm of emptying and refilling.

There is a popular expression in the world of self-care: “Fill your cup so you can fill other people’s.”

Dealing with the kind of energy conservation dilemma would challenge even the top strategists of the oil and gas world is an every day experience of those of us with MS.

The rhythm of becoming depleted and then refilling just doesn’t seem ideal to me. Is it not better to maintain a constant level of water in one’s well?

Over the years, I have enjoyed making increasing refinements to my energy-conservation strategies, guided by the mantra, “Is it worth it?”

We often make obligations of things which are actually optional, burdened by worries about how we will be judged perhaps, or a sense that we must do everything all of the time.

Women in particular are natural caretakers of others while often failing to take care of themselves.

Try knocking down some of those obstacles by asking yourself:

“What is important to me? How is this value best served? How is it not served?”

I have spent enough time feeling horribly ill and debilitated and enough time feeling wonderfully well and happy, to know which one I prefer and which one I will fight for.

I am pretty adamant when it comes to what I choose to take on and what I choose to let go. Creating boundaries to protect our health and happiness is wise and skillful.


 

“You have much to teach the world and you can help many people live their best lives. MS doesn’t invalidate anything you are – it is teaching you real skills.”

 


We Have Vital Knowledge To Share

Self-care is my passion. It has become something which I am interested in cultivating more and more understanding and experience of for reasons way beyond myself as an individual.

My life now as a teacher and coach involves private coaching sessions and also running workshops and retreats here in Australia and overseas, and writing and speaking about my experiences and the key messages we can all explore in our own lives.

This professional work has developed organically from what I have always naturally done, which is to share my own vulnerability, even my mistakes and bad habits, as well a my successes and learnings in way which I saw people respond to again and again.

It has been the case since life began that humans are at their best when they are sharing and passing down knowledge within communities.

You have so much to give. You have the knowledge, the experience and the empathy to reach out and impact people.

You are already developing expertise in some of the most commonly challenging areas of life for everyone: dealing with unpredictability, being adaptable, asserting healthy boundaries, replenishing your energy, listening to your body and using your inner resources.

You have much to teach the world and you can help many people live their best lives. MS doesn’t invalidate anything you are – it is teaching you real skills. You and what you know are valuable.


 Alison Potts has had MS all her adult life and was diagnosed at a time when there were no medical treatments. The journey to discovering optimum self care and thriving has been the best she could have taken. Born in England, she followed the sun for the power of vitamin D and moved to Australia where she is now a Meditation and Vitality Coach. Her album of guided meditations for thriving “The Sweet Spot” is available at www.innatebeing.com.au. Like her page on Facebook for more info.


25 thoughts on ‘The View From Here: Life Lessons After 24 Years With MS

  1. Hi Alison, Susana from México I’m 24 and I was diagnosed in 12/17. This article is one of the most beautiful writings I have ever read. Thank you so much for sharing your story and your experiences that inspire us and gives us hope. You are definitely a role model to me and I’m sure that keeping a healthy lifestyle and self-awareness will lead me to become a person as wise as you.

    Hugs and a lot of healing light to Australia.

  2. Hi Alison,
    Thank your for Sharon your insights and experience. Every point you addressed was very powerful and inspiring. I am 27 and was diagnosed 3 years ago. I have been focusing mainly on diet but still find myself fatigued all the time. Now I understand that self care and energy preservation must be made a priority and not second to the diet. Thank you for being an inspiration and giving us hope.

    Cindy

  3. Hi Alison, Cheryl from Adelaide, South Australia. RRMS MS first appeared in my body in 1988. Like you, there were no drugs for MS around in those days, so I am happy to say, that I am still drug free. I waited and hoped that my spastic left arm and hand would return to normal, along with many other challenging symptoms, which they all did, apart from pins & needles & fatigue. In 1992 I changed my lifestyle and diet with good results. I still have challenges with MS but overall, doing very well. I loved reading your article, you put many of our thoughts into words. I am still doing well at the age of 70yrs. Feeling very grateful. xo

    • Thanks for sharing this uplifting comment with us Cheryl. We are so glad to hear that you have been managing your MS so well for so long. Best wishes, OMS team

  4. Thanks for sharing Alison. Your contributions are always very insightful and thought provoking. You are clearly a very kind and generous person. Thanks again!

  5. I was diagnosed with MS in 2009. My older brother was diagnosed with MS around 1990, so for 29 years I had watched the disease slowly debilitate him, in spite of receiving good medical care and taking every medication available. I have mostly taken the “ignore it” approach and just went on living my life as normally as possible. I have learned some self care and setting a few boundaries, but have realized I need to take a more mindful approach. The Overcoming MS Recovery Program may be just what I need, and I will look into your guided meditations as well.

    • Hi Kevin, thanks for getting in touch. We are glad to hear that you are considering taking a more active approach to managing your MS. Our website is full of resources you can use to get started. Please let us know if you have any questions – we’ll gladly help wherever we can. Best wishes, OMS team

  6. Bravo! Life is full of choices and each one of us can choose to live a life of possibilities or one of limitations despite whatever challenge may arise. I truly feel a strong body and healthy mind help in our journey. The challenge is those that live in the dark instead of seeing the light. I too choose to listen to my body and adjust accordingly. People can get you down, doctors can get you down, drugs, etc. We just need to realize that we all need to rise above what we think we can do and entertain what we actually can do. You do not know what you can do until you do it.

  7. A really uplifting article which rung true for me. I find I have to give myself permission to do very little all day when I need to just STOP when I’m not my best. Having been diagnosed with RRMS just over a year ago I am starting to feel more comfortable to do this and it is OK to practice self-care. Thank you for articulating what I needed to hear today. Keep well.

    • Hi Amanda, you are welcome to repost this as long as you add the following notice to your blog post.”This blog post has been republished with permission from the Overcoming Multiple Sclerosis website. The original post can be found here” (hyperlink to post). Please also keep Alison’s bio and link to her Facebook page at the bottom of the post. Best wishes, OMS team

  8. Thank you so much for your comments and sharing your inspiration. We truly are warriors! And I feel we have a lot to teach people who are “healthy” about cultivating their health and valuing it. Some times the most healthy people are the ones looking after themselves after a prompt from illness or injury. So share the wealth of know;edge you have and be an example of prioritising self care and self love! 🙂 I am really grateful for each and every one of your words and have tried to reply to each individually but for some reason that is technically not working out for me ( am technically challenged – this has nothing to do with my MS!). I wish of all of you so much goodness and wellness and positivity and fun too, on the adventure of exploring all that is available. The OMS program is such a blessing to us too!

  9. Hi Alison,
    Thank you for writing your article and sharing your wellbeing evolution, some of it was so similar to my story – I was diagnosed in 1996 and also read Judy Graham’s book. When the neurologist told me I had MS I was relieved. I knew it and it was good to get it confirmed; once you know what you’ve got you can start doing something about it. The type A personality type also resonated with me and I have struggled with this element of self care the most. Whilst I’ve done yoga for 15 years and meditation for 45 years it took numerous visits to a neuropsychologist last year to get my head straight with my relationship with MS and she had a brilliant analogy for my relationship with MS which others may find useful; you are in a swimming pool and MS is a beach ball. I was trying to control it so pressing it down under the water, focussing all my attention on it etc which was energy zapping and impossible to do – you cannot control MS. What I needed to do was let it go, the beachball (MS) was still there floating about the pool but I wasn’t focused on it and instead was getting on with enjoying myself in the pool as opposed to trying to control the MS all the time. Anyway, this worked for me.

  10. “We often make obligations of things which are actually optional, burdened by worries about how we will be judged perhaps, or a sense that we must do everything all of the time.” Such true words that really hit home with me. Wonderful article, thank you Alison.

  11. Like Cheryl from Adelaide, I have had MS for many years – 32 years to be exact. Never any DMT’s and OMS program after attending MS retreat in 2006. Advanced to SPMS in 2004 which left me with weakness on right side. However, apart from this I have remained stable since. Am still able to manage ADL’s, and with aid of stick outside and scooter for longer distances.

    I am so grateful for the Overcoming MS program which I believe Is responsible for my good health aged 72 years.

  12. Alison,

    Wow, amazing insight and growth… thank you.

    You provided something that I will take and incorporate into life.

    Rick

  13. Hi Alison,
    I thank you along with everyone else who finds such inspiration in your words. I am from Canada and was diagnosed with RRMS in 2005. I too, find I am far more in-tune with my body and have cultivated a self-awareness of what my body is presently feeling and what I can do to calm and relax myself. I take great pleasure in working and resting in our family garden and reading some great books during our cold, winters. Continue to enjoy all that life has to offer. With warmest regards, Laurie.

  14. This was an amazing article and oh so true. I truly look to master this. I am 38 and MS started for me at 20 when my eye muscles and legs stopped working. Since then I have managed off and on and keep pretty healthy. I went to a nutritionist for the first time a few years ago and she told me I was angry and I was too hard on myself and that I needed to get regular massages and walk barefoot on the beach. This was insulting to me because I like to work, not lay around on the beach like I’m on vacation. I actually hated any idea of any vacation because I liked to work! I didn’t even want to celebrate my anniversary the way my husband always did because I hated taking vacations! Recently the last 2 years my legs have started not working well and I quickily went from a regular jogger, someone who was an athlete my whole life, to someone whose legs physically won’t run and that’s very hard on me because my 80 year old mother can run and I couldn’t run to save my life.
    I know everything you say is true, and I know I’m missing a high level of self-worth. I get all my worth from my accomplishments. I know this is a key to seeing better health and I’m looking forward to getting there!
    (Sorry this is so long, I don’t ever really talk about this with anyone)
    Thank you for this wonderful article!

  15. Thank you for the uplifting and genuine sharing of your MS story. Like you, MS unexpectedly arrived at the young age of 18 to a girl on Auckland NZ. This sent us all into a whirlpool as I lost the total eyesight in one eye for quite a few months. No good news of medication other than the prednisone that was being given via the drop for a while. 35 years later I can confirm and share that my dedication to living life well with MS has been a journey indeed. I have had numerous moments of RRMS which have been balanced with some newer medications. Loving life daily, taking care of myself and living with purpose has worked well. Yes I meet a wonderful man who has been my husband for 27 years and shared in the joys and moments of parenting our 2 daughters now in their 20’s. After many years of working and being involved in many things I am now finishing the 2nd year if my University Counselling Degree. Day by day and living well physically and mentally has huge benefits. Thanks for your inspired writing.

  16. Fantastic read 👌 A Must for anyone recently diagnosed 😊 Very true in many respects ❤️
    Thank you for this post 🙏

  17. It’s been 11 years since my first bout of optic neuritis now, and I’m still learning. Managing my energy levels is my biggest problem, although most of my friends would tell you I never stop! In saying that, MS has improved my life exponentially, as I would otherwise most likely be working a job I hated, that paid the bills – surviving. Instead I have helped bring up my nieces the last 6.5 years, I went and lived at the other end of the country, took up knitting and crocheting, and met the most amazing and inspiring people. Yes this needle phobe still has to have her mother or little sister inject her Avonex once a week (8 years on, and I still dread it too!), but that’s a small price to pay. My online dating advert stating my MS was what attracted my now husband too, as he has his own health issues. Be kind to yourself, and anytime you feel down, sit with it for a while. Do your grieving. Just remember to get back up again. When I’m feeling down, I always remind myself that there’s others worse off than me, and that’s what gets me out of bed.

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