Dealing With Lupus and Emotions
Nearly everyone with lupus experiences fatigue at some point, but for some it is more pronounced than others. For me, this has been my most debilitating symptom and I find that my body requires a lot more sleep than the average person just to function.
As such, it can make you feel so much more worn down and ill equipped to deal with the things life throws at you.
Fatigue has been part of my daily life for the past nine years, some days being much worse than others. There are days when I literally can’t get out of bed due to the overwhelming need to continue sleeping, and days when I can just push through.
This has led to me having to live a life around my fatigue in order to balance having lupus and being a productive human being. As most with lupus are aware, those two things are not always easy to do in tandem.
When having bouts of extreme fatigue, emotions can run high and feel almost impossible to cope with. As someone who has suffered from depression on and off my entire life, this is one that really gets me when I am fatigued.
Often times, I’ll go in a circle in my head, convincing myself that I will never not be tired again and that my life is going to be useless; I’m either going to be 45 and living with relatives or homeless on the streets because I am going to be too tired to do anything.
The depression can be crippling and I often use my fatigue as an excuse to sleep even more than I need to so I can avoid the horrible, sinking feeling depression brings on. Lupus and depression, especially coupled with fatigue, can really distort your thoughts and make it difficult to think logically about the situation.
What often helps me is to make lists of all of the things I have done in spite of lupus, which makes me feel a bit less like my future is going to look like some post-apocalyptic horror film. Reminding myself that the crippling kind of fatigue comes and goes is also a strategy I use, though at times it can be difficult to see past the fog you’re in.
Often times, I scare myself into thinking that this time the crippling fatigue or depression are both going to be a permanent thing. You may have to fight really hard to employ logic, but I promise it is there deep inside!
Irritability is another emotion that seems to coincide with fatigue and it can make it very difficult to stay pleasant to those you are in contact with on a daily basis. By nature, I don’t snap at people very often, so the magnified irritation I feel with others is often only manifested internally.
Depending on how you handle irritability, it can drive you or those close to you — or both — insane.
Instead of snapping or letting other people’s trivial habits eat you up inside, try to remove yourself from the situation. It may not always be possible depending on your living situation, but I find this works well for me.
I remind myself that whatever it is they are doing is not irritating when the fatigue isn’t as bad, so perhaps I should do something in order to avoid a conflict or becoming further irritated. Taking your comforter and sleeping in another room for a couple of hours can help if you are finding your partner’s habits especially annoying during bouts of fatigue, or going into a quiet area of the house and listening to music or mediations (which you can find in no short supply on YouTube) also works.
Sometimes when I am especially fatigued, I can also experience tearfulness, which may or may not go along with depression. In tearful episodes, however, I don’t even need to be especially sad.
Sometimes a Hallmark commercial or something someone says that is especially sweet can trigger it. When these things happen, I find it best to just let myself cry.
It can be embarrassing at times, but it just means an extra trip to the bathroom to let it all out. You might find that a good cry can be somewhat therapeutic and you might even feel a bit cleansed afterward.
Anger and Resentment
Anger and resentment are two others feelings I sometimes notice with my fatigue, and they go hand-in-hand. I’m generally not an angry or resentful person, but at times of really terrible lupus fatigue, I may find myself getting angrier or more resentful at people.
Although this is similar to irritability, it usually manifests more as anger at your situation and those who are not dealing with it. This especially occurs for me when I hear “normal” people with 9-5 jobs complaining about being exhausted from work or moaning about how they haven’t had the flu in years and now they are ill in bed.
It can get especially frustrating because lupus is invisible, and people may express that they are “jealous” that you get to “lay in bed all day.” However, they have no idea what many of us would give to have enough energy to do a 9-5 job!
This can lead to rifts in friendships and can also contribute to feelings of depression and irritability. When this occurs, sometimes I vent to my other chronically ill friends, which really helps put things in perspective. I also like to make lists of things I have accomplished so I can look back on it when I am feeling especially useless due to my fatigue.
Lastly, stress can be a big factor that both makes your fatigue worse and heightens all of the other negative feelings you may be having.
For me, I often get upset if the work I’m supposed to be doing gets pushed to the side in favour of longer sleeps, which in turn leads to stress.
This can be exacerbated by financial stress if you are unable to work or the fatigue takes time away from your job. Although I work from home, I still find I get very stressed when I am behind on things, so I like to keep lists of things that absolutely need to be done.
If you only have energy to do one very necessary thing a day, then set that as your goal. Everything else can wait until you’re in fighting form.
When dealing with fatigue, managing it can be one of the keys to keeping emotions in check. Although it can get out of control if you’re having a flare, try to work around day-to-day fatigue. Get enough sleep for your body, even if that means 10-12 hours a night.
When you feel up to it (though don’t push — you know your body best), exercise is a great way to combat sleepiness. This doesn’t necessarily mean you have to run a marathon (although if you can, more power to you!), but gentle exercise like yoga, walking the dog or even just walking around the block can make you feel a little more invigorated and help to clear your head.
Remember to take time out for yourself and allow yourself time to feel the emotions you’re having, but not letting them run away with you.