Person with ME
Sue

 

It all started in 1996 though in 1978 I caught glandular fever and just afterwards in my nurse training found I was always getting tonsillitis. In 1996 I came down with a serious set of symptoms which included palpitations, chest pains and very sore joints. I was so ill that I was admitted to hospital with pericarditis.

I was unable to walk for 6 weeks. I took ages to respond to treatment and over the next few months I was given so many blood tests which eventually concluded I had a virus from the enteroviral family related to polio.

More weird symptoms started that year. Firstly I was unable to remember how to spell simple words. I had to eat carbohydrates or I became very weak. I had panic attacks, night sweats, muscle twitching, bloating and IBS symptoms. There were also problems with my temperature control and more often than not it was subnormal. I felt wired like I had been pumped full of adrenaline but hopelessly shattered and lethargic. The palpitations continued and fuelled this feeling. Even a phone ringing would set them off. I suffered dreadfully with insomnia.

Over the four years from 1996 to 2000 I recovered to about 80%. I then started to see an increase in symptoms again until in 1995 I collapsed again from which I am still recovering. I have a few other strange symptoms such as constant sinus stuffiness. I have had phantom toothaches but the dentist can't find anything wrong. I get dreadful nightmares and I have had some severe migraine headaches. My hay fever is so much worse. I also find standing up in one position very difficult and I have had bouts of vertigo.

So now it looks like I will have this illness forever. It has taken some of my personality away but I fight each day to preserve the bit of me I still have. I try to live for the moment and I try to do things even though the payback can be hard. I know I am lucky as I was 36 when I became ill and had my family by then. It is a cruel and life changing disease but I have had good days in between the showers and storms.