Tiredness tips from an Occupational Therapist

Charlie Laver is a specialist Rheumatology Occupational Therapist at Pennine Musculoskeletal Partnership and chair of the specialist rheumatology group at the College of Occupational Therapists. She regularly sees patients who are suffering with tiredness as a result of their condition. These are her tips about how to tackle tiredness today:

What’s the best way to overcome tiredness?

Charlie says: We ask our patients to keep an activity diary for at least one week, so that together we can see what they are doing each day and how this is impacting on their energy level. Some people are exhausted because they are simply doing too much and burning out. Others are tired because they are doing too little, and their muscles are deconditioning, and they are gradually becoming less able to keep up energy levels. Steady pacing is very important.

What is pacing?

Charlie says: It is basically trying to spread activity out throughout a day or a week, rather than doing a big blitz of activity which then wipes us out for the rest of the day or week. Our natural tendency is to get everything done in one go, which is fine when we have no other problems, but it is not normally possible when we do.

By keeping an activity diary it’s possible to see which activities take up a lot of energy, and leave you feeling tired, and which activities are lighter and more easily done. It soon becomes possible to see the patterns and then use what you learn to plan ahead better.

It can be frustrating to have to plan everything, including planning to be spontaneous, but it’s important to spread out the energy-draining tasks, not just through the week but through the month or year. Don’t, for example, plan to move house, get married and run a marathon in the same month, or the same year for that matter!

Some people use the Spoons Theory to make it easier to quantify their energy resources.

What is Spoons Theory?

Charlie says: The idea of ‘Spoons’ is that you quantify how much energy you have each day by saying you have a certain number of spoons. If you have lots of energy you might say you have ten spoons, whereas low energy might be just one or two spoons. The number of spoons you use is relative, and personal to you. There’s no right and wrong, it’s just about what makes sense to you, and then using your own gauge consistently.

This approach was pioneered by Christine Miserandino, a writer, blogger and lupus patient advocate. She herself has lupus. She wrote about spoons on her blog Butyoudontlooksick.com, from where it inspired a lot of people. Spoons has become popular because it seems easier to quantify energy in terms of something tangible like a spoon, and easier to talk about it to others. Getting family and friends to understand how arthritis affect you is for many the biggest hurdle, and to a point, I think people have felt less anxious talking about spoons, rather than talking about feeling tired.

Because it’s invisible, tiredness can be difficult for others to appreciate. They may also get impatient or frustrated with hearing you talk of feeling tired. Not surprisingly there are a lot of guilt feelings attached to tiredness for many people. It’s as though they feel they are holding others back by having to say no to things, or change plans at the last minute. Planning ahead to avoid surprises or disappointment, and being open about how much energy, or spoons, you have will help this.

What if an absolute necessity drains all the spoons – eg, a single parent with young children or a young person with a very demanding job or exams?

Charlie says: We would say make sure you find some fun and joy in some of your activities. Activity can be physically and emotionally draining. If nothing that you do brings you joy you will feel more exhausted after it. I always suggest to parents of young children that they need to make some ‘me’ time and accept a little help to achieve this.

In fact, fun, joy and positivity are vital ingredients for helping to beat tiredness. That’s also why we suggest people have a long-term goal to work towards. It really helps to have something great to aim for, and to get encouragement from friends, family, your health team and even online communities. Your goal can be something as small as walking around the park or as big as running the marathon or starting a new job. Sometimes our fatigue won’t improve overnight and we need to get into habits, so a longer term goal is good to work towards.

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It’s very difficult to do anything when we feel so tired, though?

Charlie says: It is, yes, but it’s so important to stay a little bit active every day. I meet many people who have slipped gradually into a totally inactive lifestyle, maybe because they are worried about making their symptoms worse or just feel too exhausted or low in mood.

Doing too little can make you feel more tired and less able, and it undermines our confidence too. It’s very important to start doing something – even if it’s a few exercises at home or a gentle walk around the block, and to slowly build up from there. Ask your GP or rheumatologist to refer you to a physiotherapist who can help get you active again.

Charlie’s Top Tips to start doing today

• Try to spread your job out throughout the day or the week.
• Remember that if you don’t finish something it’s not the end of the world – there will always be an ironing pile or washing up to do.
• Do little and often.
• Be prepared to give something a miss if you have an important event or night out planned, we have to give and take with our fatigue.
• Sometimes you can’t fight the tiredness, so do rest when you need to.
• Try not to sleep during the day as this will ruin your night, find something relaxing that will keep you awake but rest your body. Reading, knitting, extreme-jigsawing – get in touch with your inner crafter!
• Sorry folks, but TV and computer games are often fatigue’s biggest enemy. Don’t veg infront of the TV because you will feel worse afterwards!
• Accept help. It is not giving in to the disease; merely it is saying that there are some things that are not worth giving up your energy for.
• At work, take every coffee and lunch break that you are entitled to. If you work at a computer, set an alarm or prompt that reminds you to take you hands off the keyboard or to stop writing every 5 minutes for 30 seconds or so, to you’re your hands a break. It also helps to move out of your chair and change position regularly.
• Getting family to understand how arthritis affects you is the biggest hurdle. Having a code word rather than having to explain yourself every time might help. Try spoon theory.

Tackle Tiredness Today:

If you feel tired all of the time…
Tell your GP or your rheumatologist or nurse. You do not have to cope with your tiredness alone. There may be simple changes to your lifestyle or treatment plan that could help.