Living with Invisible fatigue

Burnout and Post viral fatigue symptoms

A combination of various factors such as persistent sleep disturbance, living under chronic and sustained stress and having chicken pox as an adult, all meant that one day when I was at work for Hilton Hotels (where I was employed as a Health and Safety Manager two days a week) I was suddenly utterly incapacitated by severe pain. On another occasion, I recall standing at the bottom of the stairs, unable to go up them as my whole body felt like lead.

I went to my GP who, after a series of blood tests to eliminate the other usual culprits for such symptoms (such as iron deficiency or depression) diagnosed Chronic Fatigue Syndrome and signed me off work for a few months.  I ended up being off for a whole year. After an Occupational Health assessment, during which it was evident that I would not be able to return even part time, the company ended my contract.

I remained out of work for 13 years.

I am now back at work part time with various adaptations including working from home, additional leave and an understanding, informed employer. 

When other people simply don’t get it…

Living with an invisible disability, like ME/CFS, is incredibly hard.  I have recently been encountering the pain of friends and family really not ‘getting it’ at all and finding it hard to appreciate how I must manage my resources so carefully.   In my experience managing my diet has been very important due to aggravated IBS symptoms as part of the condition.  These dietary choices which include eating fish for high protein has been challenged by my Buddhist friends who do not see how this can align with my desire not to ‘cause harm to other living beings’.  It’s a fair point, and a challenging one when others don’t ‘get’ how difficult it is to manage life with this condition.

 A leaking energy battery

The metaphor I have is how my energy feels like this magnetic pull that wants me to slide down through the concrete and into the earth such is the severity of the depletion of energy.  Just mustering the capacity to get up out of bed and get dressed can feel like a huge hurdle most days.  Sleep isn’t refreshing for someone with ME and on waking there is a certain amount of juice in the tank (the amount of which varies according to how active I have been, how stressed, how sensory stimulated and so on) and it can rapidly just pour away - like someone has pulled the plug - simply from making breakfast, and emptying the dishwasher or answering a few emails.  I can manage to walk the dog but I have to rest afterwards, due to post exertional malaise, and also call on a dog walker some days.  The fact that I can walk the dog though is a huge indicator of progress in the 18 years of my condition.

Creating a lifestyle to help manage ME/CFS/post viral symptoms

So, progress is possible and it is different for everyone dependent on their lifestyle choices, living conditions, psychological conditioning, the presence/influence of traumatic events and lots of other factors.  I feel though, that I am so skilled at managing my symptoms and keeping myself resourced that others find it hard to see what I am working with or why I have to do this.  For example, one friend finds it hard to understand why I can’t manage regular phone calls or meeting up as much or for as long as they would like.   To continue my metaphor of ‘falling through the concrete into the earth’ it’s as if I have learnt strategies that enable me to put in false floors or ledges that interrupt the fall so to speak.  These include, eating lots of protein and other dietary changes according to how my body responds to different foods.  It includes balancing my activity and rest (so for example I work from 9am until lunchtime, rest in the afternoon and then resume some work in the early evening).  I also take regular ‘unplugged’ times off work where I try to do very little, which includes one day a week that I keep clear of commitments.  It includes minimising stress and practising regulating my nervous system from an activated state to a ‘rest and digest’ mode - through meditation, yoga nidra, breath work and so on.

How to manage unpredictable and invisible fatigue symptoms

Our programmes assist with all these aspects and support people like me to find ways to manage their symptoms. It often starts with someone keeping a diary of symptoms and activities. I found this a very helpful way to identify what kind of activities or environments have the most draining effect and which are the most re-fuelling.   This awareness enables me to make informed choices even though sometimes it’s not possible.  Sometimes, it can be a bit of bargaining that’s involved. For example, I may decide to drive a long distance in order to see someone I care about and know that I will need to make sure I can rest to recover in the subsequent days.  It can be very tough having to adjust your life in accordance with such limitations when life continues to demand so much of us with its speed and expectations around ‘performance’ and ‘achievement’.  Having to come to terms, and grieve, for all that I have lost in this condition is an ongoing process for which its important to seek support.