A big part of my “day job” is helping raise awareness within the organisation of the issues facing people with chronic fatigue as a result of a disability or long term health condition. I’ve spent a long time myself trying to find a working pattern that meant I could work as much as possible (the mortgage won’t pay itself!) but didn’t result in me doing nothing but sleeping when I wasn’t there, or worse still, continually triggered crashes that left me unable to work for extended periods of time. Chronic Fatigue Syndrome is so temperamental – you can never be completely sure what might trigger a crash, and something that was fine in the past might suddenly be the thing that tips you over the edge. No wonder people who don’t live with it struggle to understand – no two patients are the same, and the variety of symptoms and experiences is huge!
My own working pattern has changed a lot since I started my phased return after a year off sick due to my CFS/ME crash. I’ve been able to very gradually increase my hours from just doing a couple of hours work a couple of days a week, to the point I’m at now where I work 4 days a week. I’ve never managed to get back to full time hours, but nowadays that’s not what I’m aiming for.
I can honestly say this whole experience has taught me the real value of having a good work life balance, and just how different activities impact on my health.
Unsurprisingly, I have far more energy for the things I love, than I do the things I hate! I’ll still crash if and when I overdo things – because its easy to push too far when doing something you love – but it feels like its less traumatic when I crash then, I’m more able to speak kindly to myself, and I can see the benefits of whatever it might have been that triggered it. Compare that to a crash from doing too much of something I don’t like, or something that turned out to be more stressful than anticipated and its harder for me to accept the inevitable exhaustion and pain that follows and leads to me berating myself for not looking after myself enough. Not a helpful response, which if anything, makes the crash last that bit longer – being upset and angry uses up so much energy!
There are several things I’ve found help me to manage working around my condition – I’m lucky enough to work for a national organisation in a very dispersed team, so I can work from home 99% of the time. Sometimes it can feel pretty isolating, so I have to make the effort to prevent that from happening. But its worth it for the fact that I have complete control over my environment – and no background noise to contend with! I’ve proven to myself and others on numerous occasions that when my brain has to multi-task now, it just can’t. It’s hilarious at times, and really upsetting at others. Just the other day I was putting the washing on whilst making a cup of tea – ended up with fabric softner in my mug with the tea bag! Could have been worse I suppose – at least I didn’t pour tea into the washing machine! Maybe I should start keeping track of the ridiculous stuff my over tired, brain-fogged brain does – it certainly has comedy value!
I’ve created an infographic to help explain some of the things that make working a little easier for people managing fatigue. Of course, this only really applies to those who have less severe fatigue and are able to begin working again, or who are considering a return to work. Personally, I spent what felt like forever stuck in limbo – being too sick to work, but being too well to stay at home. That was where the phased return plan over several months made a difference – without that who knows where I might have been. I was one of the lucky ones, with a supportive GP who was willing and able to make the case for me to go very slowly, and go back earlier than one occupational health advisor had advised (they believed I shouldn’t go back to work until I could manage five half days in the office, and failed to see that the only way I was going to get to that place, was to start with far fewer hours, and no out of work activity matched up to actually being at work!).
So, what are the things that have helped me?
1. Understanding – I have an incredibly supportive and understanding manager, and am part of a really great team, so I’ve been able to share a lot about my personal experience of fatigue to help them understand more about CFS/ME and how I have to work. It makes so much difference working in that environment.
2. Help with pacing – I have a deal with my manager whereby if I feel like things health-wise are deteriorating I let her know. That way if there’s something urgent I’m working on, she can support me. She knows the tasks I can do when I’m feeling more fatigued than normal, and the ones I just can’t touch – I have a special skill where when I’m getting worse I read numbers backwards, but don’t know I’m doing it. Statistics work does not happen on those days! I also make sure I take regular breaks throughout the day, and sometimes my lunch break is actually a sleep break and I go to bed for an hour. Its all about pacing myself so I have the best chance possible.
3. Controlling my work environment – working from home enables me to do that, but sometimes I have to go into offices for updates to my laptop or to go to meetings. I don’t cope well in a noisy environment, I can’t concentrate on anything then! Light intolerance is a big issue for me too, so I have to make sure I get a desk away from those horrible bright lights. Then there’s the people in the office who are always hot and want every window open, usually on a day where nothing I do makes me feel warm enough. Cue awkward conversation! My advice? Always wear layers – lots and lots of layers!
4. Feeling part of the team – coming back to work after a long time off and working from home really makes you feel separate from everyone and everything else. Part of the responsibility to address that falls to me, but it’s shared with my boss and the team. We all make the effort to check in on one another, and make sure everyone has access to all the info they might need at any one time. Very quickly that feeling of being one of the team comes back, and those feelings of isolation disappear, resurfacing very rarely.
5. Flexibility – this is absolutely vital. I work very flexibly – I start when I’m ready, provided its before 10am, take lots of short breaks throughout the day, manage my work diary so I’m not in back to back conference calls, travel only when absolutely essential and work very short days either side of those travel days to limit its impact. I also work reduced hours, because full time is just too much for me. Our flexible working policy is really good, and working this way means that I’m able to contribute just as much as anyone else without it being detrimental to my health (most of the time!).
6. Catching bugs – this is a bit of a contentious one if I’m honest. For most of us wit fatigue, our immune systems aren’t functioning properly. So if we have to sit in an open plan office filled with people with coughs and colds, it inevitably means we catch it – and probably suffer with it far more than a normally healthy person would. The message me and others in our organisation share frequently, is that if you’re sick, but well enough to work, just work from home. That way the rest of the office doesn’t get it – and we avoid cases like one of my colleagues who picked up the office cold then quickly ended up in hospital with pneumonia. Its another reason I’m grateful for my home working arrangement – I spend far less time with sick people now!
Do you work whilst managing fatigue? What have you found helpful?
If you need some support to work your way through returning to work, or life with CFS/ME and other conditions, you can find out more here.
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