Fatigue, Spoons and Insomnia

One of the major symptoms of autoimmune disease is fatigue. Another symptom is insomnia.

Most people have a good understanding of the concept of fatigue. It's that deeply tired feeling that comes on after a long stressful day at work or that bone tiredness you get when after you've been exercising. Fatigue can be a positive thing, it means you have worked hard and are most likely going to have a good night's sleep as a reward.

Fatigue for autoimmune sufferer's is an entirely different experience. It is there all the time, or just under the surface. Sleeping will not cure the fatigue - you go to sleep tired and wake up tired (if you are lucky enough to fall sleep). There is no feeling of 'reward' because the level of activity carried out doesn't warrant the amount of fatigue that is felt.

One of the best ways of explaining the fatigue experienced by autoimmune warriors is Christine Meserandino's 'Spoon Theory'. To learn more about Spoon Theory follow this link:

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I can absolutely relate to Spoon Theory and it has definitely helped me to explain to my family and friends how my Lupus affects me.

The best way that I can describe my fatigue is an all-encompassing tiredness. I feel like I have the 'flu everyday. My body is heavy, my mind is dull and I desperately want to sleep. The 'flu feeling gets into my bones and joints too. I get shooting pains down my limbs and the joints in my hands, wrists, elbows, knees, ankles and feet become swollen and ache. My body temperature is also affected, it will swing from feverish sweating to shivering and chilled.

To combat fatigue, I have learned that I need to plan out my days, pace myself and factor in plenty of rest breaks. On regular days I break up my activities into chunks - get myself up and ready, then rest; do some housework then rest etc. etc. If I try to push myself through a day, my disease will flare and punish me for it the next day. If I know that I have a 'big day' coming up I make sure that I am well rested the day before and that my schedule is cleared the the day after. This tactic doesn't always stave off a flare, but it certainly lessens the severity.

Insomnia is another major issue for me. I am frequently awake for a period of over 36 hours. I try to sleep, my body wants to sleep, but it just wont nod off. The idea of suffering from extreme fatigue and insomnia at the same time is a very odd concept. Being awake for extended periods of time can be quite disorientating and it definitely makes my Lupus symptoms worse. At the end of a period of insomnia I will typically sleep for a very long time - anywhere between 12 and 24 hours. I have yet to find a remedy for my insomnia, so if anybody has any tips please let me know....

The fatigue and insomnia that are part and parcel of autoimmune diseases can be hard for people to get their heads around. It can be hurtful to hear people say that you are lazy or need to try harder. The best advice I can give you is to listen to your body and trust your instincts. It is absolutely OK to say no and do what you feel is best for you. The people closest to you will understand and anybody who isn't willing to make an effort to understand your condition probably isn't worth worrying about.