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 in early December, 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 might 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.

 
 

November 2020

I can’t believe that I wrote my initial article five years ago. A lot has happened since then, but from a health perspective I’m much the same as I was then. As I mentioned before, I work as a nurse at the local NHS hospital, on a busy stroke unit, so my ability to “work in the numbers” had vanished. I have had to adapt my working life, but understandably management wanted to justify what I do, so they demanded I get a formal diagnosis from a specialist M.E. clinic.

Well, that was easier said than done! The first time I went to my GP surgery to request a referral, I saw a locum GP who basically told me it was all in my mind and I could simply make myself better by getting over it! I was very deflated after that appointment and sadly did wonder if it was all in my mind. I went back to management and explained my issue with the GP, so they referred me to the rheumatology department who ruled out other causes for my symptoms with blood tests and asking about the symptoms, and wrote to my GP asking for them to consider M.E. As part of the blood tests they checked my vitamin D levels, which were apparently the lowest they had ever seen so put me on high doses; apparently, most M.E. sufferers will have low vitamin D levels, which is something I did not know.

After that I managed to see my regular GP who, thankfully, was more than happy to refer me to the local specialist M.E. services, which were over 70 miles away. After filling in countless bits of paper about my symptoms, I finally received an appointment with a specialist M.E. doctor at their clinic in August 2018. She was lovely and went through all my symptoms etc. and told me she had absolutely no doubts at all that I have M.E. and that I literally suffer from all potential symptoms in their classifications for the illness. I have to say I was relieved that someone else actually believed me, and that I finally had a formal diagnosis made by a specialist.

I took my proof to work, and have had many meetings with my matron, occupational health, my ward manager and Human Resources, but am still waiting for a formal job title. They have finally accepted that I do still carry out all tasks expected of a band 6 sister (according to the job description) so that is good news as it means I don’t have to have a new job description written, which would have probably been a drop in pay. I have another meeting scheduled with them to hopefully sort things out once and for all, but time will tell. One of our stroke consultants wants me to work a couple of days each week leading our TIA/stroke clinics, and that would suit my illness better, so I hope they will agree to that.

When I went to the M.E. clinic, the doctor was very concerned that I work full time, as she said according to the tests they did, I am using 75 % of my energy at work, which leaves very little for me once home. I accept what she says and that I am not really helping myself long term by continuing to work full time, but as my husband is too unwell to ever work again, we really can’t afford for me to drop my hours at this stage. I just try to do the best I can.

One thing I’ve certainly realised is that if you get ill or have an injury when you have M.E., it takes an inordinately long time to improve. Just before I went to the M.E. clinic in August 2018, I broke a couple of toes and I still have pain and am unable to drive over two years later! I now use a stick when I walk “long” distances and I think that is partly the foot and partly the M.E. to be honest.

We have had a tough time mentally and emotionally too, and I always find that just as exhausting as physical exertion, if not more so. My mum and dad moved to be near to us six years ago as my dad had been diagnosed with Alzheimer’s dementia, and he has since deteriorated substantially. He is often aggressive, and certainly can’t have a conversation with you any longer. He gets very frustrated and takes it out on Mum, so we try and help out as much as possible. Mum doesn’t want him to go into a care home but she has her own health problems with chronic obstructive pulmonary disease and arthritis, so at some point I don’t see another way forward.

Covid has obviously brought its own challenges. I almost thought I would be classified as clinically vulnerable and have to stay at home shielding but apparently not, so I have worked all through it, with my fingers crossed that I do not catch Covid, as I am scared how it will affect me. Mum had to shield so we couldn’t even go over and see them both, let alone help out, so that has been really difficult.

Our beloved dog died last year and we were devastated, which was an exhausting experience. We now have two cats, who are totally crazy. We would have had another dog but neither of us can walk one now so it would have been cruel. Despite everything, we are a happy little family who make the best of what we have, because that’s all you can do, right?

 
 

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