Wednesday, 27 June 2012

Things Doctors Have Said - Post ME (Part 1)

At the age of 18 I went off to university in Durham. The first 18 months passed without incident, then in February of my second year I went down with flu.  I was due to go and visit an old school friend at another university.  After a few days of being ill I walked into town to buy my ticket at the railway station.  I got about half way, started feeling really weird and had to return to my college.

This pattern continued for several weeks.  I'd start to feel better, walk into town to go to a concert or visit friends in another part of the university, start feeling really ill and return to college.

This is all a long time ago and the chronology of what happened has been partially lost in the mists of my now ageing brain!

My university GP couldn't find anything wrong.  I returned home for Easter, where my own GP also couldn't find anything wrong (no surprises there").

At the start of the summer term I returned to University.  I even managed to take my second year exams and get the equivalent of 2.2.  Goodness knows how I did that, but I did.

A Shining Light

Meanwhile, I was referred to the "University Medical Officer".  He was a psychiatrist.  (If you are an ME sufferer and you just read that, I imagine that you have just gone all hot and cold.  I know what you are thinking and I'll tell you more about an encounter with another psychiatrist later.)  He was called Dr Munro and he was a truly wonderful man - I sincerely mean that.  He listened to me and for my remaining two years at university was my most ardent supporter and was always willing to come and see me in college at the drop of a hat.  He gave me advise that remains with me to this day and, I suspect, new a lot more about my condition than he was ever willing to say.  Remember, had barely been heard of in 1976.

He was the first person who realised that my illness wasn't psychiatric it was real.  Initially (as he later told me) he believed that was something seriously wrong with my heart.  He sent me home with a letter telling my GP to "for God's sake do something about it".

So, I returned to my GP.  He referred me to Kingston Hospital, which was being rebuilt.  The cardiac unit was out of action so the consultant, who told us he was due to retire, came to visit me at home.

Ok, here we go again.  His diagnosis?  "You're suffering from nervous exhaution", he said.  In my (still) innocence (but learning) of how to handle doctors I asked him what could cause that, as I had no idea what he meant.  He fixed me with a pitying stare, worthy of any psychiatrist (ooooooo - I must tell you both my psychiatrist stories) and said "I don't know, you tell me."

This was on a Thursday.  I went away for the weekend with my parents, who owned a cottage in Dorset.  By the time we left on Sunday, I really was suffering from nervous exhaustion as I spent the whole weekend worrying about what it was that I was worrying about.  I vividly remember packing a bag in my bedroom and suddenly saying to myself "this is stupid.  I'm giving myself nervous exhaustion."

At some time I was then referred to a Cardiac consultant at St Thomas Hospital in London.  I saw him privately and he too was a lovely man.  He was always reassuring, always listened to me and, in restrospect, I realise he knew more than he was, perhaps, able to tell me, given the state of knowledge of ME at that time.

I remember him telling me that conditions like mine usually happened when people were in their 20s and 30s, that they knew very little about it and he was relying on me to tell him.  He never mentioned ME.  At that time I had been prescribed beta blockers to calm down my heart which, when taped for 24 hours, had been found to be doing 120 beats a minute when I was asleep and 180 a minute when I was awake.

I had also been diagnosed with a potentially over-active thyroid.  I know I was prescribed something which meant I had to return to my GP for a periodic blood tests over 3 months.  At the end of the 3 months he asked me could I "put your hand on your heart and say you feel better than you did 3 months ago".  I couldn't, because I didn't.

His face fell, he instantly lost interest and when I asked him if I should increase the dose of any of the medication I had been prescribed he barked at me that "the idea is to take you off them, you know, not for you to take more of them."  I was advised to return to university.  I think that was the last time I saw that GP - I was starting to learn!

During the next two years (I had to repeat my final year, although I was never well enough to take my final exams.  I just believed at the time that I had to try repeating the year that I had missed most of as if I didn't I might always regret not having tried.)

Here we go again

Then, in my last year at university I hurt my neck.  This wasn't the first time, I'd first had problems at the age of 12 or 13.  You guessed it - I went to my GP.  I'd changed by then, to another GP in the same practice.  He turned out to make the first one seem like an angel with wings and a halo, but I didn't know that then.

He wasn't interested and told me to take pain killers.  This went on for a year or so, with headaches that went on for days (whilst also having ME) and finally I asked him to refer me for an x-ray.  He did, but informed me that it showed nothing.

Then, for the first time, I heard about osteopathy.  I went to see an osteopath who, whilst apparently attempting to pull my head right off, informed me that I had "twisted one of the vertebrae in my neck".

Ok - you guessed it.  I returned to my GP.  He shouted at me.  "How dare you go and see an osteopath."  "You could have had cancer.....etc, etc, etc".  I stared at him and calmly said to him "but you told me there was nothing wrong with me".

To this day I have back and neck problems, kept in check by McTimoney Chiropractic - a technique I discovered about 20 years ago after having got to the stage where I literally wouldn't let anyone touch my back and assumed I would have to live with severe back pain for the rest of my life.  McT Chiropractic is my miracle.  If only something similar could happen for ME.

...... And Again

I was left taking high doses of beta blockers whilst simultaneously being told by my GP that there was, in fact, nothing wrong with me.

Several times I asked him what the side effects were - once he lost his infamous temper and shouted at me "there are no side effects from these pills".

This was in the days before the internet.  Although I was unconvinced I had no way of finding out if what he said was true.  Medicines didn't include comprehensive patient information leaflets, as they do now.

Anyone who has taken beta blockers will know just how they really make you feel.  It took another doctor to finally enlighten me.

...... And Then??

At the age of around 26/27 I started getting severed abdominal pain again.  Obviously not my appendix, I didn't have on by then!  My GP thought I might have an ovarian cyst so sent me for a laparoscopy.

Before doing the operation they did the usual pre-operative testing and realised (as I always put it now) "oh s**t there's something wrong with her heart"  I was told I'd need to talk to a cardiologist.  A young, newly qualified man duly arrived.  I explained the problem to him (I have a slightly dodgy valve, and an odd T wave).  He told me that the high dose of beta blockers I was taking could cause a range of side effects and duly listed almost all the symptoms I had.

I returned from hospital to Guildford.  I was in for 2 nights, during which time my parents moved from Surbiton to Guildford.  I wasn't well enough to live on my own or work so was still living at home.

It didn't take me long to make the decision that I had to cut down on the beta blockers.  By then I changed GPs.  Did I get a better one?  What do you think?  This one was young and rude, as opposed to old and rude.  I asked him for advise on cutting down on the beta blockers, but he simply informed me that I wouldn't be able to.  I was growing up and learning by then - and that was a red rag to a bull.  Over the next few months I cut them down and stopped taking them.  I've never taken them since.  They were no longer necessary and had been making me so ill.

I finally felt that I was well enough to get a part-time job and found a company just down the road who were looking for an office worker 3 afternoons a week.  I got the job.  It paid less than I was getting on the dole, but I couldn't wait to come off it.  The medical officers I'd seen were, to say the least, just as rude as my GP.  But that's all another story.

My GP proceeded to tell me that if I wanted him to treat me I "had" to see the cardiologist in Guildford, not the one I'd been seeing in London.  He later denied having said this.  So, off I went to see the cardiologist in a now defunct and very run down hospital in Guildford.  They weren't interested in seeing me and I wasn't interested in seeing them.  There is something "wrong" with my heart, but it's minor.  I tried to explain to the doctor about the total exhaustion I suffered from.  He just sneared at me and told me that he got tired too and at the end of a 12 hour shift all he wanted to do was sleep too.

How wonderful to be able to work a 12 hour shift!

Now, I have to tell my psychiatrist stories.  One is ME related, and comes next.  The other has nothing to do with ME.  In fact it has nothing to do with illness of any kind.  But it's hysterical and a little light relief is always good.

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