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What My Loved Ones Need to Know About Life With Fibromyalgia

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An open letter to my friends and family:

It is difficult to explain fibromyalgia, osteoarthritis and chronic illness. It is more than constant pain – it is exhaustion, lack of energy and a multitude of other symptoms that make functioning each day really hard. Some days are better than others, and then I tend to overdo things to get them done.

It is like everything is amplified – temperature, smells, sounds, sensitivity to bright lights as well as pain. Just everything.

The thing is, no matter how hard I try, when the tank is empty, there are no reserves and tolerance levels become zilch. I have to eke out the energy I have, and it’s a juggle and quite often something I have to pay for later. I tend to prefer to be alone because social interaction has become arduous.

Some of the symptoms I experience are:

  • Widespread pain
  • Stiffness
  • Joint pain
  • Headaches
  • Diarrhea, upset stomach, digestive problems
  • Limited energy
  • Insomnia
  • Exhaustion
  • Depression
  • Anxiety
  • Nausea
  • Brain fog
  • Difficulty concentrating
  • Difficulty in speech, getting the right words out, stumbling over them
  • Eyesight fluctuations
  • Balance problems
  • Chronic sinusitis
  • Numbness and tingling in hands and feet
  • Swelling of face, hands and feet
  • Palpitations

I am doing the best I can. Some people don’t understand the illness. I have decided to speak up and out instead of covering up how I feel and am doing what I need to do to enable myself to live and cope as well as possible. This includes reducing stressors, not doing what I cannot comfortably do and so on.

I get the feeling some people are of the opinion that it cannot be that bad. Of course I am aware most people are not able to fully understand something unless it happens to them, but let me tell you, it is not that bad… it is a whole lot worse.

I struggle each and every day, so please ease up on the expectations, accept that I cannot do some things, respect there are limitations and don’t take things personally. I know it’s hard for someone who can clean the shower or toilet with ease, for example, to understand what it is like when everyday tasks take on mammoth proportions.

If you want to help, ask me – don’t assume you know what is best for me. Things are not always as they appear. I probably look quite well. Try not to judge unless you walk in my shoes. I don’t want sympathy, I just need you to try to understand.

I am doing the very best I can.

I’m learning that I have to do what is right for me, not what is best for everyone else, and if that offends you or tramples upon your sensibilities, I am sorry. I’ve gone past being careful not to upset anyone or hurt their feelings. I’m too tired for all that. I’m learning to say “no” more often.
Tony knows and understands. He has seen me at the end of my tether all too often lately when the pain is so bad I am beside myself and tears are falling as a consequence because there is nothing else for it.

If you are still unconvinced, have a talk with my doctor – she will put you right.

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Thinkstock photo via stevanovicigor.

Originally published: March 3, 2017
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