Ways to treat and manage your symptoms
Jane is a 42 year old legal secretary who has recently had a diagnosis of scleroderma. She let the nurse in clinic know that she felt exhausted all the time and was having difficulty keeping on top of things both at work and at home so Jane was referred to Occupational Therapy for support with managing her fatigue. This is what they discussed:
Starts with getting herself and her children (aged 8 and 11) ready for school. She gets the children's clothes out for them, packs their bags and makes packed lunches before dropping them off at school. Jane knows that she starts to flag late morning and so tries to get all the main tasks for the day done in the morning. She has a 45 minute break at lunchtime and usually sits at her desk and reads a magazine or chats to colleagues while eating her lunch.
The afternoon goes slowly and she feels she is less productive but gets away with this because of getting through most of her work in the morning. Jane also finds that her hands are often quite sore by the afternoon as she does a lot of typing. After work she picks the children up from their grandparents house, goes home and cooks evening meal and helps with homework before getting the children to bed.
She has always enjoyed the gym and tries to go in the evening but is often too tired so usually does some tidying up before watching TV and going to bed. Jane is keen to keep working but is unsure how much longer she will be able to; she has already taken quite a bit of time off because of her health and is worried about her sickness record.
Her line manager knows that she has health problems but she hasn't fully discussed her condition with her. On discussion of fatigue management Jane recognised the "boom and bust" cycles; she felt that she was constantly feeling that she should be doing more and frustrated that she couldn't be as active as she had been previously.
By breaking down Jane's day and trying to identify the potential contributing factors to her fatigue we were able to look at small changes that could be made to try and help better manage her energy levels. - We discussed the importance of identifying areas where others can help and asking for support.
We discussed that Jane got the children's clothes out for them and helped them in getting ready for school out of habit and to help get ready quicker in the mornings. Jane reflected that they could be more independent with this and in doing so she could be doing other tasks while they were getting themselves ready for school. - Another way to reduce stress in the morning was to prepare the children's packed lunches the day before and to get them involved in helping with this. We also discussed Jane's food choices for her own lunch and types of foods that may help with energy levels in the afternoon. - We identified that Jane may feel more energised in the afternoon if she gets out of the office to go for a short walk.
Jane also felt that this way she would feel 'less guilty' if she didn't make it to the gym in the evening. Jane recognised that she wasn't currently able to do the intensity of exercise sessions in the gym that she had previously and so felt that committing to regular light exercise would help her build her fitness levels back up. She planned to ask a colleague to join her so that she wouldn't miss out on the social chat in the office. - A further option was to discuss with her manager whether it was an option to take a slightly shorter lunch break to allow her to have a small break mid-morning and mid-afternoon. We discussed that if Jane was happy to discuss her condition with her employer they may be able to offer more support to her at work. Jane agreed to do this and planned to take in some leaflets about Scleroderma to help with explaining her condition.
We discussed that part of the reason Jane is so tired in the afternoon may result from her trying to get through everything in the morning. Jane found difficulty in identifying 'heavier' and 'lighter' activities at work but we were able to identify that she could switch between different types of tasks (i.e. making phone calls, report writing etc.).
By regularly changing activity and position this would help reduce the fatigue associated with, for example, prolonged keyboard use. We discussed that if Jane is open with her manager about changes she is trying to make in order to reduce her fatigue they are more likely to be understanding if there is a change in her productivity while she gets the balance right. They may also be able to access Occupational Health services to support by means of workplace assessment. By using an activity diary Jane would be able to plan her day to identify time frames for alternating activities and monitor her fatigue so that she could evaluate whether this was helping.
It is useful to aim to stop an activity at the point before you get tired, rather than waiting until you are feeling tired to change. - Jane could ask grandparents to help her children with their homework before she picked them up; she felt however that it was part of her role as their mum to help with this. It is important to remember that while there may be a different way of doing something it may not be the right choice for you. You need to think about what is important to you and what you would be happy to let go and leave to others. We discussed that even if this was done just from time, she would be able to use this time to do other enjoyable things with them so felt she may try and get some balance through support with this from time to time.
At the next clinic appointment Jane said that she felt much more positive about managing her fatigue. She had managed to make some of the changes that we had discussed and felt that overall her fatigue levels were more manageable. "I still feel tired but also feel that I am more in control. It's difficult because I sometimes slip back and forget about planning and pacing activities but I am quicker at recognising when things are getting on top of me and know the types of things I can do to try and manage it."