M.E sufferers are exceptionally good at micromanagement. We have to be, otherwise we would be constantly flat-lining. We have to plan our energy down to the minutest detail as we know just 5 minute of too much exertion could set us back for hours, if not days.
As an example, I was supposed to be going to Winchester later today to meet a business mentor for the social enterprise course I am currently working with. I have planned my time and energy since Monday to make sure that I didn’t have payback today, but to also make sure that I had completed any work I had to do to. Thus ensuring I could rest during the day today in preparation for the 4 hour round trip. It’s not simply a case of adding the 4 hr round trip to an already busy schedule. I have to think carefully about where best to spend energy to make sure that everything still gets done but over a longer time frame. As it happens, I won’t be attending tonight because the mentor is unable to attend but also because I am feeling additionally poorly with a germy bug.
Very few people, outside of the M.E community, understand how we can plan being unwell. When I used to be employed full-time, I often took Tuesdays off work as holiday leave. This is because I knew my payback would affect me 2 days after a weekend of catching up with friends etc. My leave entitlement was often wasted on bed rest. If I hadn’t done that my level of sickness absence would have been 45 days a year…minimum! During a particularly bad ‘relapse’ that lasted months, I remember a meeting with my line manager. She said she was dismayed that my life basically consisted of work and sleep. She had noticed how I didn’t really have a life outside of work and I was spending my weekends resting to be well enough to come to work on the Monday morning. During this time, I had to very carefully monitor my activity levels at weekends because I was scared that I would lose my job. That constant fear added to my already flared symptoms. Pressure from Occupational Health and being told that my job wasn’t particularly suited to having M.E also didn’t help. Is any job a good match for someone with M.E?! I wasn’t allowed to reduce my hours (customer facing role) and so I was making the most of a bad situation – by micromanaging and monitoring every speck of activity.
This micromanagement also means we are hyper aware of our health. We are very in tune with every symptom and know the instant something starts to deflate. Personally, I can feel a wave of fatigue wash over me like a tsunami. It isn’t something that creeps up gradually. I have to STOP. This is why self-employment and working from home is a godsend. I only have to drag my weary body up a flight of stairs to get into my safe haven (BED) instead of having to explain that I feel unwell (slight understatement!), get permission to leave, walk to the car park and drive home…and then drag myself up a flight of stairs!
It also means we are very good at getting from point A to Z in the least energy draining way possible. I have set way of doing things, cooking for example. My methods may not make sense to my family but I do it my way because it is the least energy intensive way to do it! The least amount of bending down into cupboards or to put stuff into the oven, the least amount of lifting saucepans and more importantly…the least amount of time needed standing keeping an eye on food cooking on the hob!
and Foggy (OBVIOUSLY)