Tuesday, 19 May 2015


Six days on from my last post.  I find myself still floored by the events of the last 10 days.  There is so much I both need and want to get down in this blog, but right now I just don't have the energy to do it so, I'll just try and get the events down at this point.
I spent from last Friday tea time until Wednesday lunchtime in bed.  When I got up to go to the bathroom I felt nauseous and lightheaded in a strange sort of off balance type of way.  Very difficult to describe and very very weak.  By Wednesday lunchtime I felt a little stronger and ventured down to the sofa for some of the afternoon.  I did the same on Thursday.
On Friday, a week after my return from the hospital in London.  I was still feeling bad and thought the best plan would be to go and see my GP.  My thinking was that it would be harder to see a doctor if I was feeling worse over the weekend, so should go now.  In the doctors surgery my heart rate was high and he wanted me to go straight to the hospital, In fact he wanted to call me an ambulance.  I told him that wouldn't be necessary as I had a friend outside and she kindly took me straight there.
In Accident and Emergency Ant turned up and bloods and an X-Ray were taken and blood pressure and heart rate monitored.  We were hoping they would let me home, but instead I was taken up to one of the wards for further monitoring.  They decided they wanted a cardiologist to see me the following morning, so I stayed attached to the monitor overnight.
Four and a half hours sleep later I am not feeling replenished or rejuvenated and lie listening to podcasts and meditating to try and get my heart rate down as I wait for the doctor to do their rounds.
Fortunately, the doctor I saw had a few friends who had ME and she was very understanding of how sensitive the condition could be.  It was good that she had a junior doctor with her whom she was filling in with things that might need to be taken into consideration if someone had ME, so that was good to see.  She said she would email my heart consultant and ask him to chase the results from the Neurological hospital and that I Should phone them too.  She upped my medication and said I could go home (at which point my heart rate dropped with relief!)
The doctor that discharged me asked who my ME specialist is.  I told her I didn't
have one and asked whether there was one at the hospital?  The answer was no, but she said, that was not a reason for not having one and I was to contact my GP and he should find me one.  So, when energy returns, I will find myself an ME specialist and I'm pretty sure my GP will refer me. I haven't seen an ME specialist since 2011 so it's probably worth a go.  Sadly, that specialist, who I found very helpful retired not long after I saw her.
So, since being discharged on Saturday I have done very little.  Staying in bed, heading downstairs for lunch and again later in the afternoon when the family are all around.   The increased medication has definitely taken my heart rate down, just getting the occasional palpitations now (always preceded by clammy sweating feet!).  I am trying to stay positive and not let this setback get me down.  I am watching inspirational videos and listening to lots of inspiring and entertaining podcasts
and radio.    There is a calm acceptance on my part that it is going to take time to recover, there is no point being frustrated as that is not going to help move me forward.

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