Developing Post Viral Fatigue Syndrome When Working A Demanding Job, by Jenny
by Jenny Collins
I developed Post Viral Fatigue Syndrome whilst working a demanding, full-time job. Around the time that I developed Post Vital Fatigue Syndrome, I had just taken on a new job running a National Programme for the NHS. I had only been in the post for 5 months and was really enjoying it. I was that type of person who was always on the go. In fact, I had been effectively holding down two full time jobs immediately prior to my new promotion!
I already had a mobility impairment from years ago which made walking difficult and tiring. I was constantly fighting the pain when I walked but I coped...
Then I got a bout of a flu-like virus and two weeks on I was feeling worse not better. My body just would not get going again. I was sleeping endlessly 20+ hours a day and still waking up un-refreshed. I was very breathless and couldn't walk across the room in one go.
(For Chronic Fatigue Syndrome symptoms, click here...)
I kept going back to the doctor and ended up seeing a different doctor at each visit. One GP helpfully suggested that if I was incompetent at my new job that was not his problem and I should just get on with it!!!!
Then my saviour arrived on the scene: A new nurse at the GP practice who had worked with me previously. She knew 'what I was really like', and when she saw me struggling to walk across the surgery, she came running over and said, 'Good god whatever has happened to you?'
She got me in to see my own GP that day and he, in turn, made a referral to a Cardiologist. At this stage they thought it must be a cardiac related problem- possibly Heart Failure due to the breathlessness and an irregular ECG. At last someone realised I was really ill.
I saw the cardiologist the next week and he ran some tests. I was given the all clear on that score so I was back to square one. Meanwhile, I had been diagnosed as having Type II Diabetes - could this be the cause of my overwhelming tiredness?
Five months in and I was still feeling dreadful was virtually bed ridden because I was always asleep. I had hot sweats but I had freezing feet. My concentration was poor, so I couldn't read, watch TV, use the computer or remember things like phone numbers that I used daily. I couldn't distinguish what was being said if more than one person was speaking at a time. I kept dropping things and was really clumsy. I could barely make a cup of tea..... the list went on and on.
I felt really useless. My elderly, disabled mother-in-law had taken over running my home for me. My husband and daughter didn't understand what was happening to me and I could see the worry on their faces. I was also starting to become very anxious by now and had lost all my previous confidence. I was desperate to get back to being me.
The Occupational Health Nurse from work, who visited me at home every 3 months, was alsoat a loss as to what to tell my boss. We had no idea what was wrong with me. She could only suggest that when I did return to work it would have to be on a very gentle, phased basis with very limited hours each week.
And then, at last a break through...
The doctors changed my blood pressure medication and the breathlessness improved. :-)
I was still sleeping excessively though. The diabetic nurse recommended that I start taking regular exercise and go to the gym several times a week to improve my energy levels. I explained that, due to my mobility problems, I was unable to do that even before I had become ill but she wouldn't give up: I would have to go swimming 3 times a week, she insisted.
Somehow I hauled myself to the swimming pool but by the time I had got there and got changed, got into the water and tried to swim one width, I could barely get dressed again. I felt so weak that I had to telephone my parents in law to come and get me. I was bed ridden for two weeks following this attempt. So I resolved not to listen to the nurse again!
At my next doctors visit I took along a list of all my symptoms, which by now was an A4 page long. I explained what had happened after listening to the nurse. My GP (who was never the most talkative man) simply took the list, and before I could say anything more, he went down the list and started to tick things off. Then said to me that he thought it may be that I had Post Viral Fatigue Syndrome.
He explained that Post Viral Fatigue Syndrome was very difficult to diagnose but given the list of symptoms and the length of time this had all been going on (by now more than 10 months) he thought this was a distinct possibility. If he was right, the bad news was there was no effective 'treatment' he could give me. He told me that it would just be a matter of time: If I started to make an improvement in the first two years, then it was likely I would make a recovery at some point, but that even then this could take 10 -15 years.
He also told me that, if it was Post Viral Fatigue Syndrome, the biggest obstacle to overcoming it, would be me. Over the months of endless doctors visits he felt he had got to know me a bit better, and having heard about my career and interests to date, he said that the biggest adjustment I would need to make was understanding that on my good days I musn't try and be the old Jenny again: I would have to pace myself. That if I made a cup of tea one day, then if I was lucky the next day, I might be able to make the cup of tea and wash the cup up...
Surely I must be able to make progress faster than this! I used to do 20 things at once this suggestion seemed ridiculous.
We did some research at home on the internet and my symptoms did seem to fit. So now, at least I had something to focus on. Having beaten my mobility problems when I was told I would never walk again, I felt sure I could beat this too. Now I knew what I was up against but how would I go about beating this 'Post Viral Fatigue Syndrome'?
Over the coming weeks and months I started to take very small steps forward. I did experience several set-backs but I just waited until these bouts passed then started again. As my GP had said, the biggest step really was making the mental adjustment that the old Jenny was gone, and a new Jenny had to be found.
Eventually my employers and I had to agree that it was unlikely that I would be able to return to my job in a realistic timescale. They kept the post open for me for over 15 months for which I am extremely grateful, but we eventually mutually agreed that I should resign on medical grounds.
By February this year I started to feel like I was making significant progress and took on some voluntary work as Secretary to my local Free Music Festival. I have found this to be a terrific boost to my confidence. And in July I became a volunteer Director of the organisation: I work from home and can do my voluntary hours mainly at times to suit me.
In August I started a new paid job as clerk to my Village Parish Council - another small step forward! I am employed for just 8 hours a week, work from home and can do the work at times that suit me. Already the Councillors are getting used to the fact that they may get e-mails from me in the early hours of the morning - if this is when my energy levels are high that's when I do my hours! It's a major change from my previous job which often involved 90+ hours a week and a massive change in salary, but it's a start on the road back to being Jenny.
We are now facing the gut wrenching reality that we will have to move home and down-size. Without my income as the previous main breadwinner, times are very tough financially. I hope and pray that I do not have any more major relapses but I am realistic enough to know now that it may happen - and if it does I will just have to start again, and if necessary again, and again.
But who knows what the future has in store. I have just been approached to do some freelance consultancy work based on what I have achieved with my voluntary work at the Music Festival. Again, it would be doing the work at a time to suit me, so yet another door opens...
What I have learnt is that you have to learn to help yourself with this condition and listen to your own inner voice about what you can and can't do. As Scarlett O'Hara said, remember 'Tomorrow is another day'.