MS – ONE YEAR ON

I haven’t had so much as a head cold for nearly a quarter of a century. People can be dropping like flies about me with all manner of infections and viruses but their germs are somehow never able to penetrate the cloak of super-immunity that seems to surround me.  It wasn’t until I hit the dreaded menopause at 53 that I started to come unstuck.  Even then I didn’t feel ill so much – just exhausted by relentless hot flushes to the point where I would often feel light-headed and disoriented.  Occasionally I would catch myself on the verge of spontaneously losing consciousness for a few seconds.  Not long afterwards I began to experience a vague sensation of weakness in my right leg accompanied by a corresponding tightness of the gluteal muscle in my left buttock.  Nothing major, just a weird sort of sensation really.

Fast forward three years later and my condition had slowly deteriorated.  Not to the stage where I was completely debilitated by it but my ability to participate in a lot of activities had become limited.  After baffling an army of medical professionals and natural therapists on both sides of the Tasman, I visited a neurosurgeon and in June 2015 I underwent major spinal surgery for a condition known as spondylolisthesis.  Initially I was hopeful that I would finally be rid of this thing that was now overshadowing nearly everything I did, but the downward spiral continued.

Just weeks after my surgery I was dealt a major blow.  I had been made redundant.  Not only did I feel dispirited and disappointed by everything about the circumstances surrounding this, I began to lose faith in myself.  Christmas was drawing closer and since my efforts to find work were unsuccessful I ended up on a benefit.  Financially I was close to bankruptcy.

Although this worried me I still held on to the hope though that I could overcome my ‘dis-ease’ and the obstacle course of seemingly insurmountable problems that were being scattered liberally in my path.  I think the thing that saved me from plunging into a pit of hopeless despair was the fact that I have two incredible children and a very supportive circle of genuinely good friends.

Eventually I was able to find work but as it was only a temporary position I was still not out of the woods financially.  Nor was I any closer to finding out why my back problem was worsening after the surgery instead of the improvement that had been promised.  The effect that menopause had on me had also become extreme, something which I also found puzzling.  I had expected to sail through this fairly unscathed.  I’d never had any menstrual irregularities and no-one else in my family had been affected quite this badly.  Eventually I came to the conclusion that the only explanation for this unusual and mysterious weakness in my legs and the extreme menopausal nightmare I was experiencing was that it might be psychosomatic.

As I explored this mind-body concept more fully I stumbled across the work of John E Sarno MD and a condition I had not heard of before called Tension Myositis Syndrome.  He presented a very logical and convincing explanation of how chronic back pain and a lot of the current health problems plaguing modern humans are the result of the mind’s attempt to create a distraction from emotions that they don’t want to expose and have to deal with.  How anger and tension hidden deep within the subconscious accumulate due to the demands on our lives to be a good person, push harder, be liked, helpful, make everyone happy, never fail—in other words, to be perfect.

To me, this not only explained my mysterious symptoms and the lack of any hard evidence of any real ‘disease’, I also recognised myself as being very accurately described in the personality traits of people most likely to suffer from it. Those who suffer with TMS, says Dr Sarno, tend to have restrictive personalities, repressing or suppressing emotions such as, rage, anger, aggression and guilt. We want to be viewed as “nice” people. The problem is we put far too much pressure on ourselves, trying to live up to high expectations that are virtually impossible to meet.

Although this made perfect sense to me and I knew in the back of my mind there were things in my past that I had once been very angry about, I sincerely thought that I had dealt with all that crap and moved on.  Despite this, I was now 100% certain that whatever it was I was suffering from had a mind-body connection.

Evidently a large number of people are able to overcome TMS simply by being aware and fully accepting the fact that there is a mind-body connection rather than focusing on the possibility of structural damage or any actual physical illness (obviously there are enormous disclaimers in anything I’ve ever read on this topic regarding seeking a medical opinion before making this assumption).  Some people however can be totally oblivious to the presence of any such inner rage, like I was which therefore makes it humanly impossible to accept and move on without the help of psychotherapy.

Since I’d tried everything else I concluded I must fall into the latter category and made an appointment to see a psychotherapist.  She told me to write to the people who I felt had contributed to my personal life pressures both past and present.  People who I was angry with, felt guilty about, or felt fearful of and try to link my emotional reaction to these people to my symptoms.  She said to write almost from a child-like standpoint without feeling the need to even attempt to understand the other persons point of view or what circumstances they might be experiencing that would possibly cause them to act in ways that were unacceptable to me.

I thought that since I was accustomed to writing fairly frequently that this would be a relatively simple task and was surprised to find that it wasn’t.  Even though it was being written without any intention of ever sending it to the people concerned, I found myself still trying to please, trying to empathise and adopt the mature, rational, level-headed approach of a non-judgemental adult who can see both sides of the argument.  I found that the only way I could depart from this was to write as if it were a novel.  Treating it as a work of fiction I found I could express it more easily and give this terrified child that I didn’t even know existed, a chance to take centre stage and tell its side of the story.

My daughter who was living with me at the time was away overseas so this was my perfect chance for uninterrupted writing.  And write I did – almost continuously whenever I possibly could for several weeks until I reached a point where I could write no more.  I had to stop.  Not only because my daughter was arriving home the following day but because I had found I simply couldn’t go on re-living all of these grievances.  I had hoped to feel better after this out-pouring of emotional detritus but I didn’t.  Instead I had gone down in a heap and I felt worse, much worse.

The day after my daughter arrived home from overseas my legs gave way completely and I was scarcely able to move either of them.  I had pains shooting down my legs and arms that felt like electric shocks.  I had gone numb around my midriff which had affected my ability to empty my bladder and bowel.  My head was swimming and I felt disoriented and nauseous.  My daughter called an ambulance and I was stretchered out of the house and taken to public hospital and given a comprehensive MRI scan.

Two days before my admission to hospital I had been to my doctor who had diagnosed constipation.  I seldom consult with Doctor Google but I wasn’t convinced with the constipation diagnosis and on this occasion the online diagnosis proved to be more accurate than the human one.  After receiving the results of the MRI and subsequent lumbar puncture it was confirmed that I had primary progressive Multiple Sclerosis.

Although Doctor Google had prepared me for this and I was relieved to finally have the missing piece of the puzzle, the diagnosis presented a puzzle in itself.  As far as I am aware, no-one in my family has had this disease.  It was also surprising to learn that I had an auto-immune disease when I had spent the best part of my life with an almost unnatural immunity to any virulent bug imaginable.

It’s been a year since I was discharged from hospital and going back into ‘the real world’ was a very daunting experience.  For many weeks I was in a wheelchair before progressing to a walking frame and finally to crutches and a stick.  I still have bladder and bowel issues and am often overcome by an overwhelming fatigue and occasionally feel disorientated and spaced out.  I’ve been through many ups and downs in the year that has followed my diagnosis.  Yet for all of that, there have been a lot more ‘ups’ in the year following my diagnosis than there were in the year preceding it.

During the past year I have studied the how diet, sunlight, exercise, genetics and medication can be beneficial in overcoming diseases like MS.  I’ve followed these guidelines up to a point, however after reading nearly everything I could lay my hands on about how our state of mind affects the physical body, particularly in the case of auto-immune disease, I knew that my main focus needed to be on healing my internal sense of self.  Only then would these external physical effects have any chance of improving.

Strangely enough I felt a sense of shame and guilt that I was having any difficulty at all dealing with certain issues because I had allowed myself to be brain-washed into thinking they were my fault alone.  What I had experienced wasn’t too far out of the range of what could be classified as ‘normal human experience’.  Nothing sensational enough to attract media interest or have friends recoil in shock and horror if they were made aware of it.  Even so, we must be vigilant when it comes to unacceptable levels of psychological manipulation as it affects our self-esteem, damages our psyche, invalidates us, and has a negative impact on our life for a long time unless it is effectively dealt with.

MS has taught me to listen to my body because now it literally shouts at me when something is not quite right at an emotional level and I’m starting to get stressed.  I’ve learned to meditate, to take breaks, not try to set myself impossible goals and that I don’t have to be constantly striving for perfection, because I’m never going to reach it anyway.  Because of some of the hardships MS has presented for me, I think it has also taught me to be more understanding and compassionate toward others.

And I’m actually more than a little bit grateful for that.

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