Tuesday, December 22, 2015

The Successful Patient: Dealing with Autoimmune Fatigue

Not long ago, I wrote about autoimmune fatigue -- what it is, how it feels, and how it is unique to the diseases classified as autoimmune.  I realized belatedly that I had not written about how to deal with that fatigue or how to support someone who has it.  Autoimmune fatigue is one of the most frustrating parts of having an autoimmune disease, and also frustrating for doctors, caregivers and friends because there's nothing they can do to help or make it go away.

How to Deal With It
Yesterday morning I woke to a familiar feeling: my body felt like it was made of lead and moving was like pushing through dense water. I had to get up and go to work.  I wanted to stay in bed and sleep.  What to do?

Autoimmune fatigue is not like being tired after a bad night's sleep or an especially busy week.  As I explained in the earlier post, autoimmune fatigue is part of an immune response like when the body fights the flu virus. While taking medication to dampen down or stop that immune response, it's possible to still have the heavy fatigue.  The first step in dealing with it then is simply to identify and acknowledge what you are experiencing.

The second step is to have a plan.  This involves having some understanding how you react physically, emotionally and psychologically to the fatigue.  Yesterday morning, I knew that my muscles were not fatigued despite how I felt. I could move.  I reacted with despair ("Here we go again, yuck").  Then I thought "This too shall pass."  My plan is to allow myself a short time to react, to clear the channels so to speak, before moving to the next step.

Follow your schedule as much as possible.  This may seem counter-intuitive, but getting up, dressing, moving into the day and its activities will help you emotionally and psychologically.  The trick is to pace yourself.  Yesterday, I rolled out of bed and pushed myself into the day, including regular rather than decaf tea to give my energy a little boost.  I went to work but I walked slower than usual.  Everyone was acting sleepy, so I fit right in at the office.  For the morning, I paced myself at about half my normal speed of doing things.  As I began to feel better, I increased my pace but only a little.  It's important to monitor your pace so that you don't go too fast and burn out before the end of the day.

Some days, the fatigue overwhelms.  Let's be honest about that.  It can overwhelm.  Autoimmune fatigue can be debilitating and last longer than a day or two.  I've been lucky that most of the days it's happened to me, I've not been scheduled to work.  So, I was able to stay in, nap whenever I wanted, and work at my own business at a really slow pace on the sofa.  But what to do if I'm scheduled for work?  I'd probably call in sick.  I am sick, after all.  Those of us with autoimmune disease(s) have chronic illness 24/7 and are sick whether or not we appear to be sick.

Stay away from high caffeine drinks or other artificial energy boosters.  The energy that you use up while under the influence of caffeine or energy foods/drugs will only make the fatigue worse when the effects wear off.  In other words, you'll crash and crash hard.  I normally drink decaf tea, but on heavy fatigue days, I'll drink regular tea because the caffeine is mild and just enough to get me rolling.  I do not drink coffee or energy drinks. 

How to Support Someone with Autoimmune Fatigue
From consumerhealthdigest.com
First, believe him or her.  What is truly unsupportive and deeply discouraging is for family or friends to dismiss or diminish the fatigue, to make light of it, or actually tell the sufferer that it's all in his head.  It's not.  The source is the autoimmune disease and the immune response it's triggered.  Believe and be sympathetic.  Some possible phrases to say:
  • I'm sorry you're feeling so tired.  That must be frustrating.
  • I wish there were something I could do to make it better.
  • What can I do to help? (and mean it)
  • I planned to run errands today.  Is there an errand I could run for you?
  • Would you like company or to be alone for awhile? 
Second, follow up.  If you've offered to help do a specific task, do it, don't put it off.  Be trustworthy, i.e. do what you say you will do. 

Third, be willing to do tasks that maybe you don't normally do.  Be willing to run interference with others in order to protect your family member or friend.  The fatigue makes us vulnerable and it sure would be nice to know someone has our backs.

Finally, please refrain from being judgmental.  The most frustrating aspect of having an autoimmune disease is not being able to control it or the body's response to it.  Medical researchers are working hard to find cures, to develop medications and treatments.  No one with an autoimmune disease did anything to bring it upon themselves.  They are not at fault and do not deserve to be blamed. An autoimmune disease is an extraordinarily complex problem that needs to be solved.

For everyone: please be gentle and kind with yourself or your family member/friend.  Imagine how you would want to be treated if you were in their place.  Flex your compassion. Exercise your patience.

I made it through work yesterday and arrived home exhausted.  I've also learned that there's absolutely nothing wrong with crashing in front of the TV for the evening after working through an autoimmune fatigue day, especially when British mystery shows are on.

Today, I'm fine and I have no idea how long that will last....

From hiphomeschoolingblog.com

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