My Life with M.E.

On a sunny weekend in January 2003, my life suddenly changed for ever, when I contracted an illness called Myalgic Encephalomyelitis that seemed to have no end!

This was also a 'List of Current Symptoms' that I collated more than 5 years later, in June 2008:

- Constant unrelenting headache, pressure and throbbing. Varies only in intensity.

- Limited energy reserves, needing frequent rests, lying down or sitting.

- Post exertion fatigue, both mental and physical, therefore extremely limited activity level.

- Sleep - still require a lot, 10 hours+, and do not feel benefit on waking. Some nights very hard to get to sleep, or waking many times.

- Sore eyes, a feature from the beginning. Worse when more tired but persistent.

- Nausea -  because of pain, or a Gastrointestinal symptom? Also irritable bowel habit.

- Aching in the back. Frequent 'tired soreness' - needing to sit or lie.

- General malaise - feel unwell all the time, like getting the 'flu.

- Sensitivity to light and noise, always.

- Impaired memory, especially short term. Difficulty concentrating and often with finding the right words, which feels slow.

- Recurrent sore throat, when at my worst.

- Intolerance of temperature changes, plus night sweats and occasional hot flushes.

- Palpitations and dizziness - more severe earlier on.

I have also recently found some personal notes that I made about how I was feeling -
I am going to share them with you here, but let me preface this with letting you know that there is a happy end to the story. Looking back, I could not see any way out of the long dark tunnel, but I did get there, and I am now delighted to be able to help others who are stuck like I was!

On May 20th 2008, this is what I wrote . . .

"I have had to abandon my career, but I will not give up on the JOY of life!
This condition can take away so much - independence, career, mobility, cognitive function etc
It's important to hang on to what we have - especially when it's a loving and supportive relationship.

It is such a burden living as the 'sick' family member. It makes me feel guilty and sad. I know it is difficult for others to understand how I can be so sick without showing any outward physical signs.
In public I wear my 'happy face'. No one else sees the real me, struggling with this demon that has invaded my body.

My quest for a cure has led me to too many tests and drugs and lifestyle changes and years of disappointments. I am starting to distrust the medical profession and at times feel quite hopeless. I have given up so much, and every minute of every day seems to revolve around my illness. I have forgotten what it was like to wake up and simply live my life.

My husband is the one person who truly knows how sick I have become. His encouragement, patience and support are a great blessing and keep me going forward. my friends don't understand my struggle, but I am just trying to survive.

This interminable pain in my head blocks my thinking and saps my energy. It is so intrusive in my daily life. I have to realise that there may never be a cure for this problem, and that it might never go away. It makes me feel very isolated, as if no one knows what I am going through. My career, my personal life and my financial life are all in tatters.

Much of my suffering stems not just from the symptoms of the illness, but from the continuous roller coaster of frustration, shame and havoc that it has created in so many areas.

Everything is now a challenge, from completing the most routine chore, to making plans with friends and keeping them! I am always in conflict about 'pushing through' or should I just 'give in'? My old self is gone and I have not quite figured out how to piece together a new one to replace it.

Headache pain, like all pain inhibits productivity. But unrelenting pain like this, felt in the brain - at the core of one's being, has the additional challenge of interfering with how you think.
I have no energy to deal with the unpredictable. The headache is all I can handle.
I worry that it is imprinted in my Central Nervous System, never to be erased.
On rare 'better' days, I naturally do more. worse pain and fatigue will follow the next day or even longer.

Sometimes when I find myself acting 'normally' and having a good time with friends, a cloud of dread will suddenly envelop me. There is a price for everything, how much will I pay for this?

With my illness, there is such a blocking of energy. There are many components. Besides the pain, there is always a sense of heaviness that I am pushing through - to think, and to exercise, to do anything.

Perhaps I need to turn to Buddhism, where pain and suffering are an accepted part of life, and strive for Inner Peace?"

Fortunately, things did start to turn around for me soon after this time. The right people started to come into my life and show me the way forward. I began to recognise what needed to change, and I took responsibility for myself.

Three years later, I attended a workshop. We meditated and then I wrote the following question and answer:

"How Did I Heal?

I started at a place that felt like rock bottom. I thought I was going to die, and that it would be a relief to die! This frightened me and gave me the impetus to go on, to not give up, to find the answers.
Conventional medicine was not the answer, the answer lay inside of ME.

I learned about the mind-body connection, how what I think determines what I feel. I learned to FORGIVE and what a great gift this is. I learned to get in touch with my higher self, and that when I am quiet in body and mind, I find clarity and peace. I learned that spirituality is the essence of life. I learned to be a warm hearted person, and I learned to keep learning.

I learned that everyone does the best they can with what they have at any given moment. I learned that I don't have to control, in fact it is best to surrender.

I learned that life is simple, only we complicate it.

I learned to be grateful for every moment, every experience.

I learned to be ME."

True Healing begins when we stop looking outside of ourselves. It is about letting go of the need for a cure and allowing the body to repair from the inside out. Hence the name of my practice 'Healing from Within'. Lots more on this in later blog posts . . .