So, I was diagnosed with ME, what did that mean for me? For my job? For my family? For my future?
A series of hard hitting reality checks occurred pretty quickly at this point.
. Private health insurance doesn’t cover long term chronic illness
. There is no treatment that my GP can commence, she just signed me off work for a month and prescribed some pain medication.
. Having already been “off sick” for more days than I’d worked since my gallbladder surgery, work sent me to see occupational health.
. Occupational health didn’t know what ME was, so I had to educate them! But they were incredibly unhelpful.
. Everyone wanted to know how long I would be ill for, and when I’d be better.
. A referral by my GP to the Chronic Fatigue Service on the NHS would take a minimum of 12-18 weeks before I was seen.
So this was going to be a long slow process to see the people who could help me.
All I could do in the meantime was read and research into my condition.
This quickly transpired into a series of many lightbulb moments, and the realisation that I had actually had ME for several years ……..
And that a perfect storm of conditions all came crashing down together at the time of my gallbladder surgery to cause what was referred to in the ME world as a crash - a sudden extreme worsening of symptoms.
So, what was this perfect storm of events?
Having had glandular fever in my 20’s
Working in a high pressure job
Increased work stress as we were all having to reapply for our own jobs …..
My father being terminally ill with cancer
Juggling work, family, illness and all the other outside factors, busy schedules, being a school governor, etc etc
You get the picture
Apparently people who are type A personalities are typically more likely to get sick with ME.
My research also told me that I had to stop. Stop everything and rest.
Stopping everything is very hard when you’re used to being busy.
It is also incredibly isolating because you lose touch with friends, colleagues, wider family and your support system.
However I could not fully stop because I still had my family to care for, my parents to support and most exhausting of all dealing with work/occupational health/HR.
It just became one big stressful juggling act and struggle.
I still thought everything was temporary and that I would get back to some sort of normal. After all, I had been living with ME for many years before I was diagnosed. So surely this was just a blip?
Moving on to June 2013, and my father lost his fight with cancer.
Work were demanding meetings and more occupational health appointments, and the NHS Chronic Fatigue Service were trying to tell me that I could not be ‘officially seen’ because I was ‘probably depressed’.
Something I did agree with! After all my Dad had died, I had been diagnosed with something for which there was no treatment or cure, and I had been off work for the best part of 6 months and they were getting understandably twitchy about how much more time I needed to get better.
I think everyone expected me to gradually recover with enough rest and enough sleep. But one of the overriding characteristics of ME is “Unrefreshing Sleep”. No amount of sleep is going to make you feel better, and that is in complete contrast to how a normal healthy person functions.
Off course we still didn’t realise that I would never get better, and never be well enough to return to work, after all there were plenty of part time opportunities for Nurses and Lecturers. I obviously just needed to take a long break.
After one of the ‘unofficial appointments’ with the Chronic Fatigue Service where they were trying to ascertain my mental and physical health status, I had a lightbulb moment.
I could not take the stress of fighting to get seen on the NHS, and nor could I take the stress of arguing with my employer.
The occupational health system was not working and I decided, after a discussion with my Union, to quit my job. I was only 50, and a good 5 or even 10 years away from my planned retirement.
That was quite a decision - because I was on a final salary pension, all my NHS service had been TUPE’d across when we joined the university, and I had plans to return to full time employment once Becca was at University. I could then retire comfortably.
Plans however don’t mean much when you are too ill to work or even function as a parent or a person.
This ME thing had truly changed everything.
I didn’t know it then, but I had been badly advised.
I should have remained in my job, no matter how ill I was. The occupational health department should have been there to ensure that if work was not an option, could I have been supported to take ill health retirement? Something that I found myself having to apply for independently a year later which was a much harder and protracted process.
This is the reason why I am writing this blog, to share my story and educate others, in the hope to save others who have ME from falling into some of the pitfalls that I found myself in.
Hindsight is a wonderful thing.
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