Working with chronic fatigue

Working while fatigued is real dichotomy. There’s plenty of information about living with chronic fatigue out there, which proposes using phases of pacing and rest to get activity done – however that’s easier said than done for those to us who work (particularly full-time) who do not have adequate options to rest in the day.

Yes, we’re meant to rest wherever possible, but being realistic, we have bills to pay and people to look after. So fatigue management is a even bigger balancing act when you work, it’s impossibly hard some days and it’s the element of my life that I find the hardest. Chronic fatigue of course is totally different from tiredness and needs to be treated differently.

Work by definition often means pushing yourself, and even a healthy person feels tired and worn down after a work day, so trying to work with the limited amount of energy afforded by a chronic illness, while trying to maintain professionalism at work remains a massive challenge for many of us. There’s no hard and fast rules that will solve this problem, but I hope to pass on some of the tricks and coping mechanisms that help me each day.

The key is to find something that helps a little – to help you find a way through the day. Once you find a study foothold with chronic fatigue, then you can continue to climb.

A note of caution

I’m writing this as information and support for those of us who have no choice but to work with chronic fatigue. The decision to leave work, change jobs or reduce hours isn’t always doable for a lot of us. You might not be in a position to get that support. Before considering the bits that have helped me below, please talk to your health professional about your circumstances and what pacing and activity management they’d recommend for you at work. There are no hard and fast rules here, so it’s really important to listen to your body and do what is personally manageable for you.

I work in an office, so most of my advice will be tailored to that environment, and no one thing solves the fatigue problem, only a long list of things that I cycle through.

Eating well and keeping your body fuelled

It’s common sense, but this is one of the biggest areas that can help you with work. I don’t say this flippantly though, I know that some mornings or days you feel sick to your stomach with exhaustion and eating isn’t an option. I personally cope with this by eating little and often, around my nausea, and by eating plain and ordinary foods (when I feel unwell).

Missing breakfast isn’t an option. Three good meals a day are a must, but I always have something to eat to hand, and I try to eat when that peckish feeling arrives and before the painful hunger sensation arrives. It sounds obvious, but years of illness has meant that I go from fine to hungry in a couple of minutes, and the heavy fatigue from lack of food energy tends to strike not long after that.

Activity and exercise

I start each and every day with a two mile cycle into work. Cycling for me is the perfect combination of exercise and travel. It helps me to keep my pain at a tolerable level and if I go at a steady, careful pace it does help with the fatigue too. This is because expending a bit of precious energy in the morning and afternoon gives me a little more energy for some time after that cycle. It helps me sleep much better at night too.

It’s very important that you find an activity and a level of that activity that works for you. It might be right now that working alone is exercise enough, but just like you have to spend money to make money, sometimes you have to spend energy to get some energy back. Here’s how I got started with cycling. You must go carefully and gradually with any activity. It does get harder before it gets better, and don’t fret if you experience a setback.

There is some really helpful, detailed advice on how to gradually improve your activity level on this page, it’s intended for pain, but a lot of it applies to fatigue too.

Pacing and moving between your tasks

I manage hour by hour at work by staying busy, by keeping my brain honed on a task or objective. Sometimes though it’s very important when you’re finding things hard to take frequent breaks, or to switch between different tasks and aims to that might help towards that bigger priority. For example, at work I quite often have to write up a lot of complicated logic to websites, if I’m not alert enough to do that, I might use that unwell time to catch up on my emails relating to that project, or document what I am trying to accomplish so that I can redo it when my mind is feeling clearer.

So each day I start on the intensive things while I feel good, move to the slightly less intensive things when I feel less good, take a break, start to feel an improvement, and move back to the harder task when I can.

Sitting and standing

However you work, it’s really important not to stay in one position too long. I sit in a kneeling chair at work (which puts a bit of strain on your knees). The upside to that is that I feel the need to get up and move about a bit to stretch and move my body. The stigma of falling asleep as work is not enough to keep me awake most days, so whatever your default position is it’s really important to shuffle around and mix that up a bit.

I try to go for a short walk at lunch (no matter how bad I feel) sometimes the change in environment the light and the cold air can really help, to reenergise me for the afternoon.

Small tips to help you stay awake

When the fatigue hits, there are two small things to do which I do find helpful.

Chewing gum. If you chew, your brain tends to think that you’re attempting to eat and will ease off a little on that desperate feeling to sleep. It sometimes helps me, it’s all about taking the edge off of the fatigue so you can get through the day.

Holding your breath. If you’re really struggling to keep your eyes open, take a slow, deep breath, and hold your breath for as long as you are physically able, then breathe out slowly. This increases your heart rate and should help you to stay alert for a short while. I use this technique in meetings a lot. 🙂

Identify problem areas outside of your control

Are there elements of your workplace that you really struggle with? For example my workplace problem areas are the (cold) temperature, the lack of locations to rest and the lack of accessible access to the second floor. If there are any problem areas of your workplace that are out of your control that could make a massive difference to your working quality of life, then do mention this to your line manager or HR department. If you’re working in the UK, you may be afforded some protection under the Equality Act 2010, and that means your employer may be obliged to make some reasonable adjustments to your role to help you with your long-term illness or disability.

It’s a case of don’t ask don’t get though, and in my experience your work colleagues, managers and HR departments may have to follow your lead at first by letting you suggest things that you would find helpful. Don’t worry if they don’t come to mind straight away – point out that you may need some time to think about what you might find helpful, or what is reasonable to ask for. It took me a few months to think about going to the Expert Patients Programme for example. There is help and support out there in your area, you just need to know where to look.

It takes confidence to say that admit to a workplace that you have a long-term symptom like fatigue, it’s not well understood by a lot of people as it’s frequently confused with regular tiredness. It’s our job to explain how it makes our working life difficult and how you’re working hard to combat it as best you can, evidence that it doesn’t impact your ability and ask for help before a major problem arises and you’ll be in much better stead with your employer.

Stress at work

Stress is a big part of working life, and I find myself thinking more and more these days “is this stress worth my health?” and nine times out of 10 it isn’t. Let everyone else’s petty troubles flow over you. Put yourself first more often (this is very hard to do) but the longer you live with illness and fatigue the more you’ll recognise that “no” is sometimes the best answer you can give.

Lots of treats and mood boosters

Each day at work I try to think of at least one thing I’m desperately looking forward to when I get home, and I focus on that thought to keep me going. What’s equally important (and frequently forgotten) is treating yourself. I take things into work that will make me smile, I’ll save a packet of sweets for 11am, I’ll do the puzzle on the back of my desk calendar, I research the item I’ll buy with my next pay slip. Treats, rewards and incentives are really important. If you can grab some sense of excitement back into your working day it’ll be a tiny bit easier.

Rest & getting good sleep

I would probably manage even better if I could rest more in a working day, but that’s not always possible. I personally try to avoid naps (at any time of the week), and this is because I suffer from unrefreshing sleep. There’s also no where for me to nap. Despite being desperately tired in the middle of the day these two issues prevent me from napping. It’s a nice discipline to have, because it means I take the rest I need when I really need it and I haven’t developed bad sleep habits.

I’ve personally ruled out the need to nap in the day by:

  • Cycling to work
  • Moving and adjusting my working position
  • Keeping a regular bedtime and wake up time (that’s at the same time on weekends and weekdays)

If napping is something you depend on at home – that’s fine if that works for you – this might be something that you can negotiate with your employer. Communication is key, it’s important to explain why you need to rest, and how fatigue works differently to regular tiredness.

It’s not helped by the fact that I enjoy sleep a great deal, it’s the most comfortable that I am in any given day and it’s only natural that I want to cling onto it as much as possible. However it’s finding a balance, so you’re not resting too much as well as too little.

Sometimes fatigue is unavoidable. Especially if you have payback fatigue. That’s where the fatigue can hit you a few days after the activity that caused it. I find the best way to manage this is to work on the solution to the problem before it happens, by having an evenly energised working day that’s not putting you under too much strain in any one hour. That means, working, taking adequate breaks, eating and resting as you need to, and not too late after you’ve overdone something.

Avoiding post-work crashes

There is no worse feeling for me than the sensation of fighting off sleep. It’s an all or nothing experience for me. If I start to let the weight of my fatigue sink me, I will fall asleep, and if given the chance, I will sleep through to the next day.

A bad day of fatigue for me involves; fighting against a heavy and deep need to sleep all day but managing to finish a working day. Getting home and completing about an hours worth of chores before sitting down, and then immediately falling asleep as soon as I am comfortable – regardless of how early it is.

Does this sound familiar?

There’s no simple answer to this, and generally on the really bad days, I have to succumb, give in to the tiredness and sleep.

However on a good day I can manage it by having a good meal when I get home, and occupying myself with some low energy activities like knitting, playing video games or cooking a simple meal. What I really find difficult are the winter months, where my energy levels follow the evening sun, down into the horizon.

I’ve started to combat this of late by using an daylight lamp on the desk next to me, as I attempt to sit and relax. I turn it on about three hours before I go to bed and turn it off about an hour before I plan to go to sleep. This has enabled me to claw back my much-needed relaxation time in the evenings evening back from exhaustion.

Going back to work?

I’m frequently asked about when I went back to work, and how soon after my surgery. The answer to this question is very individual to you. I’m able to manage what I can, because my treatment for endometriosis has been largely successful. Yes, I am in pain most days, and I still struggle with fatigue, but about five years of working experience with this disease and it’s symptoms has largely enabled me to figure out what I can do, and what I can’t. Things are a lot better than they used to be, and for me working forms part of my coping strategy for illness. There’s a lot of trial and error involved in working with pain and fatigue.

I’d advise you to edge slowly and carefully back to work with a long-term illness, but you must have the desire and the ability to do so. It’s pointless doing so for anything other than your own needs. There will be a lot of hopeless days where you have to give up, go home and rest. There’s a really careful balance between doing what you want, and what your body enables you to do. In time you’ll build up a tolerance for working days, and I prepared myself for working life by doing as much preparation as I could while I was briefly off of work, to make the transition easier.

I got myself used to sitting at a desk again, I slowly increased the amount of time I could stand and walk unaided.

Be mindful of your energy budget

Budgeting your energy with work is extremely important. In time you’ll wake up and know roughly how much you can manage in a day, and you can plan your day accordingly. In the meantime I’d encourage you to leave yourself enough energy for an exit route home, and prioritise using your energy getting yourself comfortable at work, doing small, simple things to build tolerance.

You must always drop down the level of what you’re doing if things ever become too much, even things down to what was comfortable and stay there before trying again.

Our bodies are not as flexible as they once were, but there’s still some room to amaze. It just takes endless patience and tenacity from us to ease into working life as slowly as we dare, avoiding the pressure to do anymore than we can personally manage.

Carving out time for yourself despite a long day

No matter how busy the day is, make sure you make some time for yourself. Spend it however you wish, be it on your lunchbreak, at home or during the working day. Find a little time for something that you want to do. Working enables you to continue with your passions, and it’s your passion and rewards in life that will ultimately keep you going through the hard times that work can create. Keep this focus in mind.

Working while ill is very hard

Remember, working with chronic illness is very hard, fatigue is personally the hardest thing I have to manage while working. It’s really, really important that you’re not too hard on yourself and you don’t push yourself too hard. Pushing is for the well, you want a nice even pace to your working life that doesn’t come at the expense of everything else. Like every element of living with illness there are setbacks, and there are moments where you fail, but the positives outweigh the negatives for me, not everyone is always fit enough to work and I relish the opportunity to do so.

With the tips above I manage to work full-time, sometimes it’s impossibly hard. However most weeks I manage to work and relax sufficiently in the evenings, and now I can look forward to and enjoy my weekends. In time, and with much perseverance, the occasions where you work at the expense of everything else become fewer and your working life slowly becomes less abnormal. Slogging through the hard weeks is miserable – but the good weeks make the effort worthwhile.

Being able to work is a privilege that you really don’t appreciate until the idea of a regular income and independence become a dream thanks to long-term illness, and I hugely admire anyone else that can work as I do in the very hardest of circumstances, with time, you may be able to too.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

2 responses to “Working with chronic fatigue

  1. Elaine Minett-Smith

    I’ve just come across your blog, and your posts are very insightful. Your symptoms are just the same as mine, although suffering for 20yrs with no diagnosis until recently, I’m only just starting to understand what I’m experiencing is a real disease. Just knowing that someone else out there experiences the same as me gives me some relief in knowing that I’m not imagining it, although that might sound silly, I do feel like that as there’s so few people who even know about Endometriosis. Even the tips you give for coping with fatigue, I already do. Sleep and lack of energy, feeling nauseous and having full time employment can be difficult at times, but is necessary. I look forward to reading your other posts and any future ones.

  2. Samantha

    Reblogged this on Endometriosis Pain and commented:
    Some incredibly useful information

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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