ME Awareness Week – Some Insights for You

Recovery is often Possible – The Tortoise Wins the Race

This week it’s all about ME awareness. People diagnosed with ME/CFS and or Chronic Fatigue Syndrome often have a hard path with life. It’s not easy because – A: It’s still not very well understood in the general public, and B: It can feel like living with a body that’s totally out of your control.

Experiencing continual, debilitating fatigue, which really is just the tip of the iceberg, is a daily challenge. I know because I’ve been there. It’s not like having a normal sickness, where if you’re unlucky, it hangs around for a month or two. This is full time, everyday and night, never knowing when you will find your old body, or get your life back again. It goes on, and on, and on. This in itself creates the constant stress and cyclical nature of anxiety and depression. It’s almost impossible to understand it, even for the individual suffering, and the barrage of awful symptoms create suffocating cycles, within cycles, creating one of the most intelligent assault courses, more maze like then anything known to man.

This may all sound a little dramatic, but these words don’t compare to the level of intensity, or the level of faith and hope that is required for people having this bodily experience. A doctor once said to me, “for whatever reason, if the body goes out of alignment physiologically on a large scale, it’s really hard to get it back”. In essence many body systems begin to lose touch with supporting each other. This is why ME/CFS often concerns the Immune, Nervous, Endocrine, Cardiovascular and Digestive systems.

The good news is, I like to give evidence that it’s very much possible to get to ever increasing levels of wellness. I’m here to demonstrate example to that. As you can see in my brief images, my life was one of hospitals and crap times, hardly being able to function, for a few years, but in the recent years, I’ve been extending my boundaries and achieving great physical feats, like walking over 40 miles in a week on holiday and getting my swimming and kayaking mojo back.

I was diagnosed with ME/CFS and Fibromyalgia in 2014 – about one and a half years into the dark zone and was already using a wheelchair. I was later diagnosed with POTS. I’d been diagnosed with EDS (Hypermobility Syndrome in 2009), but at that time I was fit and healthy, albeit with some back problems.

I’d estimate that the main part of the journey – from bed / sofa bound, wheelchair using, to functioning back in life, exercising and working, took around 5/6 years, from 2013 onward. Obviously I’d add an extra year moving in toward decline, and further years of reaching the holy gospel of “vitality” again. After all, the dream isn’t just about functioning right? Recovery to me was always about feeling that vital place in my body again. So that’s around eight years for me! Eight years is a long time to learn, grow, heal, and transform, and that’s what you have to do if you have any intent to recover physically, mentally and emotionally. This is why I often remind my clients, moving through this gauntlet is akin to the most profound type of behaviour / life change you can imagine. You’re literally carving out a new version of yourself, one guided by body, and something other than the personality that led you down the rabbit hole.

Ok – so maybe it’s not such a psychological journey, for everyone, or maybe for some the road is more cause and effect, it’s structural – I.e. they got an infection and have to go on a long journey to heal the body, however whether they like it or not, the path will require of them to grow in intensity, so they wouldn’t be the same person once physically better. It still involves mastering your psychology to some degree.For others of us, the stage was set because of a physical and psychological crash, with enough biological imbalances to set up the scene for a long dark night of the soul. In this case, your healing won’t be complete until you have transformed huge aspects of your personality, lifestyle and or traumas from your life.

In reality, it doesn’t matter how this doorway was entered, because we can’t truly separate, body, mind and emotional life. If we are lucky, soul will teach us how to get through to alignment. Perhaps this alignment will be one far greater than you’ve ever imagined. After all, I do see, time and time again, the lack of balance or relationship to self for those who get caught in the CFS spiders web – in the outset, at any rate.

The confusing thing is, normally, there’s not “one thing” to fix the situation. Instead the journey is the finding out, through trial and error, what’s going on in your individual physiology and what works to bring about healing. However, despite differing symptoms, and varying puzzle parts, the journey needs the same components to recovery for everyone. Equally there are the same potential blocks for all, regardless of personal body journey. There are trends, and those of us in the world that seek to assist people in recovery seemed to have all found them, and this is because we have lived through it. We have experienced the journey to such a deep level, and those cycles, especially relapse cycles, that our minds have created awareness about the processes involved, both from an external strategy point of view and from an internal place of emotional and mental intelligence. Here, knowledge and experience is key.

If I could express any advice today to someone who struggles with ME/CFS or knows someone dealing with this experience, then I’d say, have faith, determination, and a drive to know why, and then how.

In the future I’m going to offering even more ME/CFS support in the form of webcasts and workshops, but for now I offer a series of sessions / course of one to one support for people wanting to heal from ME/CFS, Fibromyalgia and POTS.

These are also easily accessed long distance. To find out more, message me direct.

Take care of yourself.

Weight and Body Transformations and Even Macdonalds!

The upside of putting in the effort against all the odds is now paying off in huge ways this last year.

My body has been through the ringer as you may have read from my other posts, and when having experienced crippling exhaustion from: ME/CFS, POTS, Fibro, and EDS (Hypermobility Syndrome) rebuilding the body and exercising has been at times like hiking a mountain. At first it wasn’t possible, all I could ask for was some basic movement.

Unless you’ve encountered these bodily experiences, it’s hard to imagine how impossible cardio vascular exercise is. But keep the faith!

Luckily I never beat myself up when I went from a size 8 to a size 14. At the outset of my nose dive, I lost huge amounts of weight, likely because of sky high cortisol levels. Then I had the opposite experience and added a whole layer of blub around me, but in a way I was glad that I could move into this stage.

Food became very important, because it was one of the easiest things to focus on, and to bring some slight joy into my eventless, barren life, that largely existed of getting washed, dressed, and down to the garden and up again for the day, with some other things thrown in, like TV time, doing some stretches and some computer time.

Luckily I had more important things on my mind instead of worrying about my weight. For example, being able to get around more, get to work and generally back to functioning which did take around two years!

However, right from the outset, I have kept up my own tailor made movement / exercise programme for six years. Even when it was simple floor movements and light Pilates in the garden, then moving onto more complex routines, longer walks, and now I am happy to say that as a bonus I’m a size 10 again, and I think I’m rocking these jeans Yipee!

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Exercising After A Health Crisis – Body Adventures

In the last two years, I’ve slowly integrated more exercise than I did before my physical crash. I do around 50,000 steps a week, pilates at home once a week, exercise biking a couple of times a week and now swimming every two weeks. The art of rebuilding something as precious as one’s body, and healing the self, reminds me that we must be patient with ourselves, yet never give up. I’m far away from the wheelchair times, and I’m thankful for each phase of the journey.

I recently took a fun, yet challenging trip out to a local shipwreck, “The Mulberry” in Southend on Sea. I hadn’t walked out to this area for years before my crash, and it was on my goal list to see if I could do it.

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Come Join Me for an Inspiring Workshop!! I’d love to meet you :)

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If you follow my blog here, than I am saying a big thanks to you! I really hope you have found this place inspiring. I am so grateful that I am feeling pretty good these days, and I am so glad that I can be back to my old self in some ways, with a mixture of newness if you know what I mean 🙂 getting back to doing workshops, and sessions with people feels amazing, so of course, there was going to come a time that a workshop on this juncture of my life would arise, and that time is now! I want to share so much with those who need it, to assist you with getting even quicker, or even easier to your next level of feeling good.

I am holding this workshop in Leigh on Sea on July 7th, and if you are able then I’d love you to join. There is a fee for the event as I will be working hard to put together an informative banquet of bits for you, and to create a lovely space for our group to get together. If you live anywhere not too far away, then I’d love to meet you! I’m only one hour train journey from London, and even if it’s tough, it will be worth it to meet some other inspiring people. I remember that back when I was so rotten, I needed to keep the belief alive, and when I took those tough steps to do something that would nurture, or support me, each time it was part of the overall structure I was creating for my recovery. If you want any more info on the event, you can find it at my facebook page here: ME/CFS, Fibro, POTS, and Hypermobility – Insights to Healing or you can give me a call to book, or check in with any questions you have: 07532753855. I hope to see you in July, and spread the word, if there is anyone else you think could benefit from attending.

P.S. can you find my typo in the advert, you get a prize if so! 🙂

Vision Update: 90% Achieved in 3 Years

As you may have seen from another post, as part of my own engineered recovery path I created this vision board a few years back. I just let my feelings guide me to all the things that I wanted to do and have again. Not just my health but my security and purpose in the world, not to mention fun.

At the time of creation I really did think it was pointless and many of these dreams, like getting back to work, being able to kayak, going on a train trip to London, not to mention going on a holiday – seemed like pipe dreams. I was still unable to walk more than around 200metres and I was crippled by pain which made me in an anxious state, also unable to get fully into the healing zone. I’d get a bit better then have another lapse, as there was hardly any room for error, whether it was overdoing it, like unloading the dishwasher, doing the vacuuming in stages, or seeing a friend for a cup of tea, or getting caught in no sleep because of pain or fear of the symptoms.

Something always drove me onward and kept picking me up, and that is the positive part of my mental conditioning. Often our personalities, can be both the cause and the cure for why we end up in a pickle or a life nose dive. This I’ve now learned, and knowing your particular mental conditioning can certainly lead you on the road to sculpting it into something more useful. Equally corroding enough of your solid personality, will allow for your deeper Self – the part that has all the wisdom, power and loving simplicity to take the reigns.

Through a number of qualities I can now say I’ve achieved 90% of what I believed was not possible, despite a deep desire to turn things around, in fact I was growing in new ways, so I didn’t fully register.

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These Feet are Made for Walking

I’ve surpassed my walking dream 🚶🏼‍♀️!!

I used to struggle to stand up, and now I realise things have drastically changed.

On a recent holiday, my husband and I walked a total of 81,802 steps in 6 days, including travelling days! When I worked out the distance, I was shocked that I walked a total of 35 miles across the six days I spent in Spain. If you averaged this out, it meant that I was walking over 5.5miles a day.

Now this coming from someone who couldn’t walk more than 50metres a few years back is impressive.

I can now also walk very quickly up the three flights of seafront steps that I used to see as an impossibility for my future. In fact I’ve even run up them a couple of times. What can I say I wanted to feel like Rocky 🤣 I still have a little high tachycardia on reaching the top, but so do most people, so I’m not sweating the norm, which also continues to shift for me.

Moving toward more and more exercise after being POTS tastic is a great feeling. Everything in our stride. Along with pacing, rest, and a sensible regime you too could transcend your boundaries, and manoeuvre through fatigue.

You wouldn’t even care if you were symptomatic still if you could do the things you love, so keep striving for them!

Here’s to you walking, or swimming, dancing, doing whatever you enjoy again…

Victim to Victor – Thoughts on Change

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Can you turn from victim to victor? What do these archetypes mean? Maybe we need to find some balance in the way we relate to our weaknesses and strengths?

Having had a health crisis, and a big period of breakdown in my life, was the best thing that could have happened. It has allowed me to birth into something else. There are so many skills, tools and insights, that I have accumulated from this intense period of suffering, that have actually formed the foundations of my newly re-built life.

Until this juncture arrived, and slowly corroded me, I couldn’t truly know peace, I couldn’t love like I do now, and I couldn’t be as giving, or helpful to others. Equally, I couldn’t sustain success. Firstly because I had patterns that lead toward burnout, and secondly because I felt I didn’t deserve it, or it wasn’t possible.

The so called, corrosion that was happening, was not a literal diminishing, but instead, an unburdening, of neurosis. We all carry neurosis, it is the minds natural condition, yet, it is tiring being so caught up in self-preservation, self-gratification, and the need for love, safety and approval from outside sources. It’s only when our soul is moved, even through pain, that we can begin to experience life from another position. This is the position of feeling, and the acceptance of what is, or the appropriate response toward change, in any one moment.

The most crucial movement that I took, time and time again, to continue to improve my situation, and to grow, was action. Yet the most beneficial realisation I had in all the difficulty was to remember, continually, that I was the only one who was responsible for my life. No other person, could save me, or change for me what needed fixing.

There is often a real emergency when this symbolic situation shows up, and there is only one choice that can lead to transformation.

Once you make the decision to be responsible for your life, things change.

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Starting a New Job! A Big Yes to Getting our lives back…

Last year I had so many firsts, in a long time. I’ve worked so hard on my health recovery, and I’m proud of each new achievement, not only the big ones, but all of those tiny little markers, and milestones that have formed the foundation to my increasing health, stability, and what I see as a re-birth.

A few years back, the thought of working again seemed an impossible reality. Especially when I was in a wheelchair for a year, with a further two years of very little mobility. If you had told me then, that I could work two jobs, then I likely would have laughed.

Now it’s my reality.

In the continual vein, of arranging my life to suit my new self-care regime, and all of the personal changes that I’ve encountered, it’s been very important to work in a way that feels good to me. This means, work that I enjoy, that is kind to my body, which uses my skills, and gifts, and that gives me room to pace to some degree.

I wholeheartedly believe that individuals who have gone through such a difficult, yet transformative experience, such as a health crisis that lasts many years, need to revisit their values, and honour a new passage in terms of how they operate a career, or earn money.

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I’m so happy I can swim again.

I want to inspire you to believe you can do the things you once did, before the time you crashed, before your body had a fall, and your life changed, perhaps somewhat, or more drastically.

Please be motivated by this post, because I wish that I could have spoke to my suffering and frightened self a few years ago, to reassure myself that things would change.

Recently I completed a massive goal that had been seemingly impossible for a long time, and this in turn branched off into more goal progress in other areas, which I’m now going to talk about, as those little branches, and roots are what keeps the journey evolving and spreading out like a positive, healing wildfire.

I went on my first holiday abroad in a very long time, see another post about the adventures with this big triumph, and during this big achievement I solidified something I had been trying to do for a while, which was to extend to my next exercise level.

I love to swim and a beach holiday was a prime opportunity for more playing around with this deep desire.

The sea, and the holiday pools I had fun in recently, helped me to strengthen a goal that had got somewhat waylaid in 2017. Swimming!

During the recovering stages it’s trial and error for a long time, or so I found out. Swimming has always been a big love for me to get back to. My husband would often say, oh you’ll get back to swimming at some point, and despite my strong desire to achieve, if I’m honest, my mind would automatically chirp up with, “I don’t think that’s ever going to happen.”

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A Poem – ME/CFS; An Opening into Transformation

A Poem about growth, and real life for all those who have had an experience with debilitating health, (CFS / ME, POTS, and Fibromyalgia). I wrote this to help inspire people who need it, and lighten up the subject, but be honest about how challenging it can be. Life is all around us, even when we may be being pushed beyond our limits. It’s at these trying times, that life becomes even more special. When everything slows down, and you are so in the moment, even in the midst of something terrible, there is peace, and connection.

If it resonates then please feel free to share it.