Sunday, 22 December 2013

Living With Lupus: Fatigue

Do you suffer from that horrible, overwhelming fatigue that makes you feel like you have been hit by a truck and reversed over several times? If so, you are not alone. 90% of lupus patients experience some degree of fatigue, with many experiencing that life-sucking fatigue that knocks you off your feet and pushes you to the ground. The Lupus Site say that " these symptoms may vary from severe, to fleeting or persistent. As many of my fellow lupus patients will testify, lupus fatigue is more than 'just being tired' or 'feeling a little sleepy'. Most lupus patients experience extreme fatigue, which cannot be improved with sleep. It is always there, a stubborn presence in our lives that refuses to go away. It is
difficult trying to explain the sort of fatigue we experience to the people in our lives who don't have lupus. "Everyone gets tired," is what they usually say in response. "Just get some more sleep," others say. "You just need some exercise," the doctor sometimes says. Yes, everyone gets tired. But lupus fatigue is extreme and debilitating. We can't just 'push through it,' and no amount of sleep will help it at all.    

A Canadian study of 100 women with lupus found that we are simply not imagining or exaggerating our fatigue; they found that lupus patients have more fatigue than others (no sh*t Sherlock!) The researchers also found that the fatigue was caused by many various factors, not just from the disease process. Fatigue can be influenced by pain levels, mood (fatigue seems more common in those experiencing low mood and depression), disease severity, by how well you sleep (quality and quantity of sleep), your activity levels and on the level of support you receive from friends and family.

The researchers found that there are two types of fatigue experienced by lupus patients: physical and mental fatigue: 

Physical fatigue is where you feel physically unable to do something, like being too tired to get out of bed, or move. The researchers say "You should listen to it. Rest. Sit down or just collapse in bed for awhile." The researchers found that physical fatigue was associated with poorer quality and quantity of sleep, as many lupus and fibromyalgia patients will testify. I would like to add that I believe that physical fatigue can also be related to pain levels, disease activity and how well you pace yourself. The study suggests undertaking exercise to help with the physical fatigue, but the problem with this is that many lupus patients are too sick to exercise. It is not because we are lazy, it is simply because we are too ill. Standing up is an achievement for me most days, let alone exercise! If you can exercise, great, go for it! But if you can't, please don't beat yourself up about it. It is not your fault. However, there are other ways to help with the fatigue, which I will discuss shortly. 

Then there is the mental fatigue, which resembles the brain fog many lupus patients experience. I find mental fatigue very exasperating. I am a student of biology at university and compared to the focused, productive student I used to be at school ten years ago, I barely recognise myself. My brain feels like it is wading through mud and I feel like I am being constantly followed by a foggy cloud, which sucks the thoughts and life out of me. I find it very hard to concentrate and focus. I often end up reading the same thing over and over again and nothing will sink through. I seem to have no short-term memory and I'm always forgetting what I am meant to be saying half-way through my sentences. I curse myself for this, though I know it is not my fault, because the fog makes me feel dumb and stupid.  To those who don't understand, I appear slow, or anxious or bird-brained. Just like physical fatigue, this sort of fatigue is very difficult to explain to those who don't walk in our shoes. 

The researchers found that mental fatigue may be influenced by pain levels; the greater the pain, the more severe the mental fatigue. I can certainly vouch for that. Being in physical pain is physically exhausting and when you are in severe pain every single day, it becomes mentally exhausting. They also found that depression tended to be associated with mental exhaustion. In my opinion, I feel that depression is often a reaction to the frustration and despair caused by mental fatigue. 

There is not a magic cure for mental and physical fatigue, however there are little things we can do to help us out. WebMD's online lupus centre have some good resources on this subject. Firstly, here are some of the suggestions they have on dealing with lupus fatigue: 

1.  Treat Underlying Conditions That May Cause Fatigue

“Fatigue with lupus is sometimes caused by an underlying medical problem, such as anemia, fibromyalgia, depression, or a kidney or thyroid problem. And in some cases, it can be a side effect of medication,” says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and assistant professor of medicine and behavioral medicine at Rush University. “In these cases, we can often treat the fatigue by treating the condition or changing the patient’s medication.”
Ask your doctor to check if your fatigue may be related to another condition or a medication. If it is, find out about treatment.

2. Get Enough Rest to Prevent Fatigue

Most people do best with at least seven to eight hours of sleep each night. If you have lupus you may need even more sleep.
“It’s important to develop good sleeping habits,” says Jolly. “It can really make the difference in getting a good night’s sleep.”
  • Take time to relax before bedtime. A warm shower or bath can help.
  • Avoid alcohol and food or drinks that contain caffeine after dinnertime.
  • Don’t watch TV right before bedtime because it can be distracting. Read a book instead.
If there are times when you know you won’t get a full night’s sleep, you may need to plan to make it up the next day.
Even with a full night’s sleep you may need to take several rest periods throughout your day. “Some people may need to plan short periods of rest after each activity,” says Jolly. “This gives your body time to catch up and can make a big difference in how you feel.”

3.  Prioritize Activities When Living With Lupus

It’s easy to feel overwhelmed by all the things you need to do. Keeping an activity schedule for day-to-day basics can be a way to help organize your time. This way, you can plan for the things you need to do and make sure you have enough time to rest in between. When planning your schedule, do the things that are most strenuous when you feel your best. And try to break up bigger projects into smaller tasks. But try to be flexible. If you don’t have enough energy one day, don’t force yourself to do everything on your list. Reschedule those tasks instead.

5. Keep a Diary to Track Lupus Fatigue and Learn to Say No

“One of the most difficult things for people with lupus is learning to say no,” says Jolly. But if you want to have energy for the activities that are most important to you, then it’s a must. Focus on listening to your body and saying no to activities you know will leave you exhausted. Do what you need to do for yourself.
Keeping a diary is a good way to track how you feel. “A diary can be a great tool to help you learn what types of activities make you feel good and what makes you feel lousy,” says Jolly. “It can really help some people connect the dots.”
Stress can also add to fatigue, so try to avoid activities you know will increase your stress level. Instead, try to build relaxing activities into your day.
“Having lupus forces you to look at your life differently, but it doesn’t have to be negative,” says Utterback. “Lupus has actually given me a lot of gifts, such as teaching me to slow down and learning how to put myself first.”2

If you would like to try these tips, or have tried them, and would like to share your experiences, please leave comments at the end of this blog post. 

As a final note on lupus fatigue, I will leave you with Christine Miserandino's Spoon Theory video; which if you have not heard about already, provides an excellent way of explaining lupus fatigue to others: 

Thank you for taking the time to read my blog post. I hope that you have found it useful and I also hope that you enjoyed  it! Please leave any comments you may have below. 

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