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.

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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What is CFS/ME and Fibromyalgia?

WhatIsMECFSIf it still remains hard for the general medical profession to agree on what ME/CFS is, then how are we supposed to comprehend it when we have it ourselves. Furthermore, if we are the one experiencing the horrid, life altering experience, then how are those around us to understand our experience, or find ways to help.

This is why, in my opinion, it makes having this illness / condition / experience, or however you wish to frame it, a real tough situation to tackle, because there is just so much ambiguity, and even, in some cases, denial and judgement about the seriousness and reality of the actual bodily experience. This can and often does, lead to worsening cases of it when diagnosis is not swift, as in my case, and when information and support is not available at the outset. This lack of firm recognition can lead to further denial of the bodily experience, a tendency to, “battle on” and therefore, a deepening of the severity of ME/CFS and Fibromyalgia.

Action for M.E., a leading charity suggests: “Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.

Defined by the World Health Organisation as neurological, M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.

Many people with M.E. experience persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘payback’) and chronic pain. However, M.E. is characterised by a range of additional symptoms.”

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