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Living With Lupus Tiredness

I have noticed that when people say they are tired, they are talking about the tiredness that they feel when they have had a busy day or not got to bed on time.

After many years of sleeping in the daytime it has become clear to me that I suffer from three different types of tiredness.

The kinds of tiredness people refer to as normal tiredness. This for me consists of feeling slightly tired and yawning a lot, I am happy to tell people that I feel tired. It also comes on slowly during the day.

My second kind of tiredness that I will call lupus tiredness is very different. It does not come on slowly, I either wake up feeling exhausted, so when I get out of bed it feels like walking through jelly; or it can happen instantly at any point of the day with no warning so I cannot prepare myself for it.

It very rarely lasts all day for me: this tiredness is very intense, my head becomes very heavy, I find it difficult for my brain to function and moving about takes all my energy. When I sit or lie down, I fall asleep the moment I feel comfortable. I do not yawn with this type of tiredness. When I have this kind of tiredness everything comes to a stop and I just sleep. I will not tell anyone that I am feeling like this.

My third kind of tiredness has been really hard to separate from the other and I am going to call it depression tiredness. For the last eight months I have been seeing a counsellor to help me sort out my life and to learn to identify what symptoms belong to what problem so that the correct treatment can be applied.

Depression tiredness for me is a mixture of the above two. I feel tired like I would do if I have had a busy day; the tiredness develops over the day and does not come on all of a sudden. The need to stop what I am doing is fairly strong but not as strong as the lupus tiredness. The difference here is that I can identify a trigger and that I feel weepy, low and upset.

This tiredness does not go with a good nights sleep; it will hang around all day for many days or weeks, it only stops when I begin to feel happier. I quite often find that when I am in pain or if I am under a lot of stress I will get depression tiredness.

Dealing With Lupus Tiredness

Lupus tiredness can be really difficult to cope with, it is very important that you do everything you can to make sure you have a good nights sleep, some of the following ideas may help:

As the evening approaches it would be good to avoid anything that is likely to stimulate you, especially if it contains caffeine such as coffee or energising drinks. Smoking can also stimulate the body so avoid having a cigarette close to bedtime. A lot of lupus sufferers find setting a time in the evening where they don’t eat or drink anything stimulating works very well because it becomes an automatic routine.

Having a warm relaxing bath just before bedtime can help you unwind by relaxing those tense muscles and washing away the stress of the day.

Keeping your bedroom cool can help for a better nights sleep, this can be done by making sure the room temperature is kept lower in your bedroom. Having the window open can lead to a good circulation and helps keep the room cool. On those very hot summer nights try using a fan directed at your bed to help you cool down.

Doing some mindfulness meditation may also help the lupus sufferer’s tiredness as this helps the body relax and the brain stop all the rapid thoughts that are going through your head.