Nursing Myself Back to Health

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October 2015

My name is Esther and I have just turned 42. In May 2014, I was diagnosed with Myalgic Encephalomyelitis. I work full time as a nursing sister and must be one of the luckier M.E. sufferers as I can still work. However, I have had to give up most other things to be able to do this, and I have had to modify my work greatly.

I believe it all started early December in 2012. I had a bad bout of flu and was also menstruating at the time, so I figured that was why I felt rougher than ever before. I had had a particularly busy shift one Sunday and was due to start a week’s holiday the following day. I handed the bleep over to the nurse who came onto the late shift and she went off to get on with some work. I sat in the office (which wasn't connected directly to the ward at that time) and suddenly felt seriously unwell. I felt so dizzy I thought I was going to pass out. Initially I laid my head on the desk but I felt I may fall off the chair, so I sat on the floor with my head on my knees. That was no better so I lay on the floor for around an hour before I felt I could possibly sit up without collapsing again. I slowly made my way onto the chair and tried ringing the ward for some assistance, but they were very busy so no-one answered the phone. By home time I felt able to walk to the car - luckily my husband had driven me that day as I would not have been well enough to drive safely. I then spent almost the entire week in bed.

After that week I returned to work but I never felt well. I was exhausted all the time, no matter how much sleep I got. I had dark shadows and bags under my eyes all the time. I frequently felt nauseous and dizzy, and I suffered regular severe headaches, worse than I had ever had before. I found that noise was hard to cope with and bright lights made me feel more ill. I had several more "collapses", and quite a lot of sick days off work. One "collapse" I had was at home. I came home from work and ate my tea. As I walked through to the kitchen with my dirty plate, I felt overwhelmingly dizzy and needed to lie down on the floor. My husband, David, suggested I had an early night, but I could not focus on him visually as everything was blurred, and when I tried to talk, my speech was slurred. I tried to get up but could not walk so David had to help me literally crawl up the stairs to bed. I slept for 15 hours straight and when I woke I was able to function but still felt extremely exhausted. I went to the doctor’s the next week and, after I explained all my symptoms, I was surprised when he told me he thought I had M.E. but as there was no way of testing for it he had to rule out everything else instead. After a series of blood tests I was given the diagnosis, but when I asked what I could do/take to help, I was told there is nothing.

I have a regular work pattern now, with 5 days on and 2 days off, and I work the same shift every day (7am-3pm) as I cannot work long days or a mixture of various shifts, such as earlies, lates and nights etc.  I only work 4 weeks before I add some holiday to my days off in order to get a regular longer rest time. On my days off we do the shopping (often an online delivery as it’s less exhausting) on the first day, and then the next day I rest all day. I do as little as possible when I get in from work and I usually need to be in bed by 7pm in order to be able to even function the next day.

My husband suffers with depression and anxiety due to Post-Traumatic Stress Disorder so officially I am his carer when I am not at work, as he has been unable to work following a complete mental breakdown 12 years ago. Consequently, we often have a very light tea when I get home as I have no energy left to cook etc., and David is not often well enough to do much himself.

I work on an acute stroke unit, which is obviously very busy and very heavy work. I used to be a very "hands-on" nurse but I cannot physically do that now, unfortunately. I do mainly office work now, help to manage the ward, duty rosters, assessments for patients, staff interviews, discharge planning, that sort of thing. Even so, some days even that is too hard. I often find it very hard to concentrate, my memory is often shocking, and I frequently have trouble getting the right words out. I have found the attitude of some of my colleagues shocking. For a medical profession, we have extremely poor insight into M.E., and unfortunately very little sympathy - but that is mainly due to ignorance. When I was diagnosed, one of my friends laughed and said, "Well, I must have M.E. as I am tired all the time"! I so wanted to say, “Well, that is because you work full time, run around after 2 kids and a husband after work every day, and get very little rest!” But I didn't - I tried to point out that it is not just "tiredness", it is an absolute indescribable exhaustion which affects everything.

Some of my friends and colleagues have been really good, and I have posted a lot of the M.E. Support articles on my Facebook page which many of them have read and said it has given them a better insight. Doctors seem to have far less knowledge than nurses, I find.

I must say, when I read how long some people took to be diagnosed, I began to wonder if my diagnosis had been too easy and was therefore incorrect. However, the more I read about M.E. the more my symptoms are so in line with other sufferers that I am certain I was diagnosed correctly.

I worry that sometimes I do too much still, although I always used to be on the go all the time, so I have slowed down considerably. I just wonder if the fact that I fight to go on even when I feel truly horrendous is going to come back to haunt me. I will update you on my progress next year but in the meantime, it would be lovely to hear from other sufferers.

 

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