• Ron's Journey - Ronski

    I was a very healthy 50 year old working for the NHS in a clinical role as a Operating Department Practitioner. This meant working shift patterns and on call rota's, so most weeks for at least one or two shifts I worked continuously for 18 hours. I did this for 30 plus years and not once did I ever have an issue with energy or fatigue. Alongside this I did country walking and went to the gym a couple of times a week. Little did I know but the MRI anaesthetic list I was working on one Wednesday in March 2007 was to change my life so drastically.

    The list was going well and as 99% of our patients were children it was a very enjoyable session. The Anaesthetist I was working with was one of the nicest people you could ever meet. We sent for our last patient. She arrived and it was known she had learning difficulties. The anaesthetist inserted the venflon into her hand with me occluding the veins in her wrist. On the insertion of the venflon she kicked out and amazingly the venflon came out of her hand filled with blood and entered my arm. No great shakes and I didn't give it a second thought but I knew procedure had to be carried out when a needle stick takes place. Anyway to cut a long story short the necessary forms were filled in and I had the obligatory Hepatitis B vaccination. The next few days were fine and I put the incident to the back of my mind. On the Saturday my wife and I went for a walk and my legs felt as though I was fluey but I did the walk and again just put it down to one of those things that you cannot explain. Sunday was ok but Monday again I felt ill on walking and nearly collapsed. Again, stupidly, I thought no more of it. On Tuesday I had freezing cold feet but felt ok but by the evening my hands felt as icy as my feet. The day at work had gone well and we even visited the mall in the evening.

    The Wednesday was to change my life completely. I was doing a urology list which was taking place in a Lithotriptor unit. I just felt not quite right, yawning constantly and my legs felt like lead so I was really pleased when the second patient was cancelled. This meant I had plenty of time to set the MRI suite up for a anaesthetic children's list. I did this just before lunch and as I walked out of the MRI suite I felt really ill. I was light headed and had a strange sensation in my abdomen. I thought I had better have something to eat and drink. I boiled the kettle and got my sandwiches out and sat down. On eating the first sandwich my heart began palpitating constantly. I felt faint and I fell onto the floor still conscious but not able to shout or move anything. My chest then became really tight and I felt what I believe is an Angina pain and then the darkness descended. Just as I thought that this is it, my time has come, the symptoms stopped and I could feel the life coming back into my body. I instinctively felt my pulse and it was very slow then suddenly it kicked in properly and it was back to normal. I felt drained but I knew I had to get back to Theatre to get help, as even in this very busy hospital I was on my own in this x-ray coffee room.

    I stumbled down the main corridor holding onto the wall for support, the Theatres were upstairs but I just did not have the energy to take them so I headed for the lift. I came to the first wards - Coronary Care and the Paediatric unit on the other side. If I was to get help, I had no choice really - I had to go into the ward. On entering the first room on the left was the wards education room, so I stumbled in and some of the staff were having lunch. I asked permission to take a seat and rest which I did but the staff saw my complexion, ashen and sweating so was immediately placed in a wheelchair and straight to a bed. History taken, doctors and nurses assessing me and ECG monitoring for the next 48 hours. I had a echo cardiogram, exercise tolerance test, blood tests but was discharged with no real answers but I still had really heavy legs.

    After multiple admissions to hospital with chest pain and collapses, I was given a tilt test, this test was so unpleasant but indicated that my blood pressure dropped by 35mmhg on sitting to standing so a diagnosis of orthostatic intolerance was given. The cardiologist said that with the information he had from the tilt test coupled with my family history and the vaccination he felt I had ME/CFS. He said the vaccination brought a genetic condition to the surface which was vasovagal syncope part of the Dysautonomia family, and this genetic component with the vaccination is know to cause ME/CFS.

    Since then I have been seen by various doctors all having their own personal views on ME/CFS. Some have been very rude and arrogant but some have shown amazing kindness and compassion. I have had a very undulating journey with this illness, feeling at deaths door sometimes, other times feel as though victory is in sight but never quite getting there. I had to take early retirement as each time I tried to go back, I collapsed each time any effort was needed. After the third attempt to get me back to work, we all agreed to call it a day.

    With my medical knowledge I do believe it is a neurological illness of some description, more than likely a major disruption of the central and autonomic nervous system. I do get frightened and despondent at times as I do not know what the future holds. The isolation is intolerable but I have to be grateful that I have a very caring wife and daughters. I have made loads of friends on Foggy Friends and No More Panic websites as anxiety and panic disorder is an integral part of the illness for many sufferers of this illness. The main thing I have learnt and believe me I have learned the hard way, is to listen to your body, have a positive outlook and try and smile everyday.