Sept 2011 ME Story: Barry

Hello.  I am a 37 year old man who became ill around 15 months ago with what was eventually diagnosed as ME/CFS.

The first clue I had that things were awry occurred at the gym.  I was far from a fitness fanatic but I had decided to change career paths and I was attending University to gain a degree in my chosen field of Social Work.  I took advantage of the reduced rates available at the University gym and gradually started to increase fitness and stamina.

One day, I started with my usual treadmill jogging but found I just couldn’t sustain the activity, even at a slow pace.  I had to admit defeat and sheepishly returned to the changing room only 5 minutes after my workout had begun.  The next visit, I decided to try swimming instead.  I was horrified to find that I could only swim one length of the pool before I again had to admit defeat and stop.  It was like I had no lung capacity and as if my muscles were simply not supporting me.

I continued with my University studies and simply took what I thought would be a helpful break from the gym.  I began to struggle to get up in the mornings for lectures.  Everyone, healthy or not, experiences extreme bouts of tiredness but I knew this was on a different level.

I was almost physically unable to lift my head up off the pillow.  Then, as I drove home after lectures one day, I realised something was seriously wrong.  It is difficult to describe the experience but it was terrifying for me.  It felt like my point of balance had gone.  I could not judge distances or negotiate corners or bends in the road.  It was very like I would imagine driving drunk would feel.

The next stage involved an intense need to sleep.  This bordered on narcolepsy at times as I would be conscious one moment and then gone the next.  I would sleep for up to 18 hours without waking and the other 6 hours would be constant battles between wakefulness and a crushing fatigue.

I noticed I was unable to form sentences and that I was having great trouble processing what others were saying to me.  The emotional pain of this mental confusion made me want to weep whenever anyone asked me a question as I simply could not work out how to answer.

I also developed noise and light sensitivity around that time too.  Earplugs and sunglasses became standard requirements even though I never left the house.

My doctor referred me to a neurologist and I was given a brain scan (via MRI).  The scan seems to have only been focused on checking for lesions and ruling out Multiple Sclerosis and brain tumours as the neurologist was extremely dismissive of me.

He went as far as to tell me I was simply depressed and there was no physical reason for all my symptoms.  We had a fierce argument about this in his office.  I don’t think he was accustomed to his ‘wisdom’ being called into question as he then wrote my doctor a note that his time had been wasted by the referral.

This was my first taste of what other ME/CFS patients have to go through when encountering a medical profession who cannot simply say “we do not know what is wrong with you”.

Where I currently live, the house is on three levels.  Although this has created many problems in terms of access to the bathroom on the middle floor, it has allowed me to move into a single room on the top floor.

This has been a very important factor in stopping myself getting worse, I feel.  I have been able to isolate myself, to an extent at least, from the day-to-day noises of the house.  I purchased a small fridge for the room, added a kettle and splashed out on a much more comfortable mattress.

In addition, I moved in my air conditioning unit and all of these things gave me a space where I could be relatively independent and peaceful.

The reason the cognitive problems were more troubling to me than the physical ones is that I have always been someone who places a great deal of importance in my ability to problem solve and I have a constant thirst for knowledge.  This meant, when I was able, I spent whatever energy I could muster researching the illness and trying to find the best treatment plan for myself.

Thinking you are able to solve almost any problem with the use of intellect and research is dangerous when you have ME/CFS though.  I eventually came to see that.

In the first year of illness I was convinced I could heal myself.  That there was a formula others had missed and that, with the right combination of treatments and supplements, I could beat this.  With hindsight, this was arrogant and naïve.  Greater minds than mine have wrestled with this illness for many years and have not found a magic ingredient.

Mind you, it’s probably natural that we have that initial period of thinking willpower and hard work will win the day.  After all, when people contract cancer, platitudes such as “he is strong – this won’t beat him” or “she is a fighter – she will recover” are trotted out.  It creates a comforting illusion for humanity… that our strength of character can defeat illness.

I adopted the mindset that I could and would defeat my illness.  Not only that, but that I would also go ahead and help others defeat it too.

One theory, or finding, seemed to come up time and time again in my research.  That the initial year of illness is vital to long-term prognosis.  I came to understand that ‘pushing through’ during this first year could create a lifetime of debilitating illness in the worst cases.  And so, resting and listening to my body was the first thing I adopted.

If I couldn’t stay awake, I wouldn’t fight it.  If I couldn’t get out of bed, I wouldn’t fight it.  If I couldn’t speak or think, I wouldn’t fight it.

The next stage to address was how to give my body the supplements to assist function.  By this time I knew that there were no prescription drugs available to me that could really help.  I took a meta-research approach to this.  That is, I scoured every corner of the internet to find what different ‘experts’ were recommending and to find what other patients had success with.

This allowed me to draw up a broad list of supplements that seemed to be receiving more widespread support from the community.  Still being arrogant enough to believe I was smarter than most, I also did my own research of published medical papers to find supplements that were promising but hadn’t yet made it into wide use for ME/CFS.

The list of supplements I took changed over the year.  I added new ones when I could justify it and I removed those that didn’t seem to be having any impact.  The problem with taking so many pills is that you are never quite sure which of them are helping.

I was too impatient to introduce each new supplement in isolation and to remove existing supplements by the same method.  However, I think I eventually found a broadly positive combination.

Gradually, I began to see small improvements.  Whether this was more to do with the resting than the supplements, I can never know.  I have a feeling it was a combination of both though.

My mind was becoming a little sharper again and the length of time I could be on the laptop was increasing.  Speaking and listening were still difficult and telephone conversations were still something best avoided.  There was unmistakable progress though.

The main barrier then shifted from my illness to my attitude towards my illness.  Something I could not, however hard I tried, get my head around was how to find acceptance without admitting defeat.

This is probably something that comes much easier to many others but I was completely baffled by how to move forward.  I think I was of the opinion that, having rested and supplemented so religiously for a year, I should be better.  It seemed illogical to me that I wasn’t.

I had been seeking, and receiving, advice on this problem for a while but I obviously wasn’t able or ready to process the advice from others who had walked the same path before me.

Then, eventually, it sunk in.  I found a place of calm acceptance of ‘what is’ rather than what I want things to be like.  I accepted that admitting I may have to live my life around my illness was sensible rather than defeatist.

This allowed me to move out of the holding pattern I had been stuck in.  I ended my relationship of 7 years, I worked with my Occupational Therapist and Physio on how to live alongside my limitations.  I began to address problems from my past.  I started searching for my own place to live.  I joined a Community Cars scheme where I could be driven places.

All of these things, although some may seem extreme, were part of moving forward for me.  I felt alone, despite being in a relationship.  I felt trapped by a fear of not resting enough.  I felt as if I should stay indoors until I was completely recovered.  I felt afraid of finding out what my boundaries were in terms of physical ability.  I felt a need to control everything and that was simply disastrous whilst having an illness that was almost impossible to control.

Today, I am in a much better place, both spiritually and emotionally.  I am unafraid of the future and I am trying to carve out a new life for myself.  Whether I recover or not, I feel it is wise to grasp whatever life I can for myself.

House hunting, and the thought of living alone when I am so unable to do the basic things, are draining but I feel sure that I will benefit from making the leap.

My body is still only functioning at around 30% of its former capacity but I’d say my mind is functioning at around 85%.  Although losing that 15% is still a source of frustration and sadness for me at times, I recognise that I am much luckier than most.  I am able to concentrate and process information to an acceptable degree.

I have no idea what the future holds but I do know that I have been fundamentally altered, in a positive way, by the experience of illness.

I appreciate the smaller pleasures in life more.

I am less materialistic in my desires.

I am more aware of the suffering of those with chronic illnesses.

I am more aware of what it’s like to be vulnerable and how important it is that society ‘looks after’ those who need assistance to maintain their dignity and independence and to assist them in having the same rights and opportunities as those who are healthy.

I would love to have a career or purpose again.  Whatever I end up doing, it will have to fit around my illness and it will have to be in keeping with my social conscience. The days of working in the corporate world and making money for rich institutions are long gone.

I must also recognise my limitations though.  My pre-illness degree was in Social Work and it is unlikely I will finish that degree now.  The placement training would be too much for my body to handle and the stress of being a social worker would likely also be too much now.

I try to do what I can to support the community but I had to become much more realistic in my ambitions.  I initially had lofty plans to write a manual for those newly diagnosed with ME/CFS but this was unrealistic.

Now, I focus on running a Facebook group for those who wish to use a Heart Rate Monitor to manage their day-to-day activity and I write a blog that deals with the more emotional aspects of living with chronic illness.

I have provided links to both below.

I also try to be a good friend, via Facebook and email, to those beautiful souls I have met during my journey.

I live a simple life, a life that would seem boring to some, but I am constantly reminded of the blessings I have accumulated during this journey.  I am happy.

____________________________

Posted by Dominique with permission of the author.

Heart Rate Monitor group on Facebook: http://www.facebook.com/groups/ME.CFS.HRM?ap=1

Personal Blog: http://onlyresting.blogspot.com/

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