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.

Next ME/CFS, Fibro, POTS & Hypermobility: Insights to Healing Workshop Dec 6th

I’m offering my next workshop in Westcliff on Sea, Essex at The Therapy Life Centre, which will look at your journey with one or more of these health conditions / experiences.

This is a chance to learn more about your experience and let me help you understand your journey of health rebuilding, both physically and psychologically. It’s also a great way to meet others who have experienced a similar path and feel supported and encouraged to continue evolving and caring for yourself.

You can book tickets online here. I would love to meet you. If you have any questions don’t hesitate to email me or the Centre for help with booking.

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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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…

Guide to Setting Smart Goals

Taking action provides us with a sense of personal power. When we don’t like something, are unhappy, or want more positive qualities in our life, we must make a conscious choice for it to come about. Rather than giving in, or resigning ourselves to more of the same, we can get stuck in and make an effort to be proactive.

Do keep in mind however, that especially when it comes to situations of recovering health, that in some cases, the action may be less about doing and more about making a decision to accept a current situation and make the best of things, until more activity and ability to move forward can be taken. Acceptance in general can be deceiving, we may at first think that it is giving into weakness, or even apathy, yet it’s often the first stage to true transformation; and this stage cannot be rushed. Things don’t end at acceptance, it’s just an essential step for any type of new birth in life.

Once you have accepted your current reality as it is, including all “perceived” and real limitations, then you are ready to see what is truly possible. Often we don’t know what we are completely capable of, until we try. This is especially true when treading new horizons in our world. Be prepared for all manner of events, as you step into a slight unknown.

A goal comes about once the desire for change is big enough for you to devise a plan or create an aim to make a new or different step. This visionary stage is the first step. Often, if the feeling for something more positive in your life is strong enough, then you will have the fuel to get you through each stages of achieving your goal.

There are certain highly regarded qualities which are normally at the heart of our desire, which lie behind our goal. We don’t always recognise these at first, but it can help to look deeply into our bubbling passion, because once we understand these universal qualities, we can attract greater assistance from the universal flow of our life. In a nutshell, it brings us into a place of deeper manifestation.

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How Meditating Can Change Your life 

Meditation

Building a firm meditation practice can really transform your unhelpful habits, behavioural patterns and relationships. It can literally make your body, mind and life, in general, a much better place to exsist.

The type of meditation that can really help to transform your life is one where you spend time aside from your mind. It’s a reflective exercise where attention is payed to the breath so that you observe your mental patterns, rather than simply being them.

This practise is often called mindfulness meditation. It’s different to other relaxation methods, such as guided creative visualisation or hypnosis, where there is an aim or an experience of intending to lift up and out of yourself. This is incredibly useful for the purpose of relaxing, or in the case of hypnosis, for working on changing, an already identified negative habit.

However, these techniques may not offer, true transformational change within us, without the addition of a meditation practice. This is often because it can lead to escapist tendencies or avoidance of truly being with, and seeing the mental constructs which are keeping us stuck in the same cycles of behaviour. Of course, becoming more present and awake to the moment doesn’t have to arrive solely out of meditation. Many people can come to this in other ways, through shock, life trauma or just an evolving entry into an alert being state. However meditation for many, remains a useful tool to become steadily more free from the mental suffering.

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ME/CFS and Fibro in a Nutshell – My Own Theory

Key Cause – Long term over-arousal of nervous system: An abnormality in the functioning of the Hypothalamus / Adrenal Axis, (causing a maladaptive stress response) and leading to problems with the metabolic system, primarily in the production of ATP

Differential terms – Chronic fatigue or adrenal burnout is not the same as ME/CFS and Fibromyalgia which are more serious health conditions. This does not however mean that one can not recover, although the level of recovery is likely due to be different for everyone and perhaps largely based on how many contributing factors have been present and fome/cfs explainedr how long, equally the time in getting diagnosed will effect things. Moreover the level of commitment to seek healing for the body and to do work on transforming ones individual psychology, in addition to biological factors will greatly accelerate things.  A healthy spiritual attitude and the development of mindfulness meditation and present moment is key to this.
Further explanation: The ME/CFS and Fibromyalgia experience is when things have tipped beyond the state of stress overload. Likely a collection of prolonged stressors or a single trauma has lead to a crash state of ill health, which often culminates in malfunction in a number of different systems in the body. Once in this position further over-stimulation will lead to pain and an immune or nervous system reaction. Over-stimulation can be anything from moving, talking, thinking more than is possible, or exerting any energy beyond what is capable at your particular stage or level of severity.

Symptoms – This can result in some or many of these factors: depleted / weakened immunity (with auto-immune related symptoms, such as swollen lymph glands, low grade fever and raised inflammation, gut and digestive problems including Candida, IBS and subsequent nutritional deficiencies). Additionally further problems with autonomic nervous system over-activity which can cause, sleep disturbance, nerve pain, adrenal burnout, eye problems, hormonal imbalances, neurotransmitter dysfunctions / anxiety and depression, cardiological abnormalities including arrhythmia and POTs, migraine, muscle and joint pain, and metabolic dysfunction

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The Art of Pacing

Slowing down for me, is a continual process. I have a super speed mind and I’ve had to train myself, that just because I think quick doesn’t mean I should act so speedily. In fact, thinking less has been most rewarding. Feeling more and simply being has been at the heart of not only my health recovery, but in the foundations of my revised life.

It takes a great deal of discipline to pace, for some it may be easier than others. The inner critic has a lot to do with why we push beyond our boundaries rather than work within our limits, but that’s another blog.

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List of “Abnormalities” – Being Your Own Health Investigator

mecfsrecoveryA diagnosis is not the end of things. It can be the start of your commitment to getting well, but the variety of difficulties and differences, the people placed within the ME/CFS label suffer is wide. This can be true of any health crisis and chronic illness. In a way the diagnosis is the start of the journey and the end to whatever that wasn’t working about you and your life, that went before. 

However there seems to be a different version of something similar in each case, although there are certainly common markers to the symptoms and personality types that are diagnosed. Some cases are more simple and others more complex. Mine has been the latter situation. However, not wanting to underestimate or make light of the situation, even with the simple cases of ME/CFS, it can still take a vast amount of time, likely years to recover.

Finding out what is really going on for you, biologically and emotionally is very important. The main areas to rule out first, and at little cost to you, are vitamin and mineral deficiencies, which a large amount of people with ME/CFS seem to have, in addition to the staple immune and nervous system irregularities. In my case I have also found imbalances within my endocrine system. My hormones are imbalanced, and so I am addressing this with a specialist soon, after being quite disgusted at how limiting the service is within the Endocrinology department on the NHS. Continue reading