Tuesday, August 11, 2015

Dealing with Fatigue, Frustration and Fear

As published on Pain News Network (www.painnewsnetwork.org) on August 6, 2015.

Sometimes it just gets to be too much; the pain, the fatigue, the frustration and the fear. 

Wondering if things are ever going to get better.

Wondering if there will ever be a day without pain.

I have always thought of myself as a stubborn and determined person.  When I was four years old I had to wear a cast on my right leg to help stabilize my arthritic ankle.  Even at four, I didn’t let that stop me from keeping up with my twin brother on the playground.

While I was in the middle of my j-pouch surgeries I was determined to finish my doctorate degree.  I finished my dissertation and two weeks after my second surgery, while in pain and out of it because of the pain meds, my mom drove me to L.A. so I could defend my dissertation and get that “doctor” title that I had worked so hard for.

Three months ago I hurt my right knee.  After two rounds of prednisone, physical therapy, rest (sort of) and X-rays, my rheumatologist still doesn’t know what’s wrong and I still have pain every day.  Since the injury, and against the wishes of my husband to stay home and rest, I have continued to go to the gym so I can at least get a kick ass arm workout.

Why have I done all of these things?  Because I’m stubborn.  And I’m determined.  I try my hardest not to let the pain stop me from doing the things I want to do.  I try to be as normal as possible, because I hate feeling like I can’t do something and I hate for others to think that I am weak, even though I know that I am not.  I also try to take advantage of each day as much as I can because I never know when or if I will be in the hospital again, when or if I will have to have another surgery, or if my arthritis will get worse.

But sometimes it just gets to be too much.  Dealing with pain every day is tiring!  And dealing with the fatigue that comes along with the pain is tiring!  In addition to that, the frustration and fear that things will never get better and that they could possibly get worse can be incredibly overwhelming.

So here is what I do when things get to be too much.  I hope some of these tips will help those of you reading this:
  • I take a little time for myself, even if it’s just five minutes.  If I am at work, my favorite thing to do is close my office door, open YouTube on my computer and put on some yoga music.  Then I sit back, close my eyes and take deep breaths.  This does amazing things for my mind and my body.
  • I try to remember what is good and positive in my life: my son, my husband, my family, my friends.  While I still have pain, there is still so much I can do.  It helps to focus on what I can do instead of what I can’t do.
  • Get outside.  I love the beach.  It does something for me that no other place can.  But I can’t always get there, especially with family and work demands.  If I can, that’s my preference, but if I can’t, even just sitting in my backyard can do the trick.  Fresh air and vitamin D are proven mood elevators.
  • I write.  Writing about the pain, the frustration and the fears can be very therapeutic.  Have you ever wanted to vent so badly about the way you are feeling but don’t want to bother anyone with it?  Writing down exactly what you would say to someone else is a great alternative.
  • I focus on a goal and plan on how I am going to reach it.  This helps me to focus on something other than my pain and fears.  It can be a big goal (passing my final licensing exam) or a small one  (doing as much as I can this weekend with my son despite my knee pain).
  • Sometimes I just have to take a rest and realize that it is okay.  This is really hard for me to do but sometimes it is necessary.  Those of us with chronic pain can’t be expected to do everything and we can’t expect ourselves to do everything. 
Balance in life is key and part of that is taking care of ourselves and letting go of the guilt that comes along with it.

2 comments:

  1. Super great article! I was feeling the same way myself over the past few weeks! I always fear something else that might go wrong, because of how one condition can trigger the onset of another so I try to focus on being the healthiest person I can be. I always enjoy your perspective and your insights and advice, it is always very empowering and encouraging! I hope your knee feels better soon. I had a bad fall last year and tore my miniscus and it was very very painful, my knee had a swollen area on it the size of a gulf ball that lasted about six months, and it took a full year to feel stable again. And somehow, using a cane made other areas more painful and sore! OMG!! I know how you feel! Thanks again for another great article!

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  2. Sometimes I'm so tired if the fatigue and pain I just want to give up. CFS & Fibro has been consuming my life for 7+years. I have good days here and there but the loneliness is devastating. Im married and feel so very isolated and alone. There are days when dropping off the earth doesn't sound so bad. I know that's not the solution. It just gets so unbareable sometimes. I feel useless and a burden on those around me. I was fiercely independent and took care of myself from childhood. Now, I can barely make it to the grocery store for a couple of things. Having a bad few days.

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