Don’t say that to me…

Every single person with a chronic illness will tell you the same. Never say to me: You don’t look ill. Please, never do. It hurts in so many ways. No, it’s not a compliment at all. Most of really ill people will try their very best to hide it. To pretend to be normal. They will do everything in their power to not stand out.

Yes, I will smile as much as I can! Yes, I will do as much as possible with that little energy I have. Yes, I will wear high heals when my husband is with me to support me.

No, I won’t explain myself to you. Forget it.

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“I survived, because the fire inside me burned brighter than the fire around me.”

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Many times I have had enough. Enough of pain I feel all the time. Enough of sleepless nights because of that. Enough of fatigue it brought with it.

But what choice do I have? I have to live, or end it. And ending living is not what I want. There is too much beauty around. Too much love next to me.

Very often darkness overshadows the light. But without darkness we don’t appreciate sparkling. And life isn’t fair at all. Can’t count the times I asked “why me?”. “Why little, innocent children?”. “Why good people?”

Do you know an answer for those questions? Can you help me out?


It hurts, but ok, I’m used to it…


I feel horrific today. Again. Everything I can think of is painful. My muscles, my nails, my hair even. My body lives his own life, my head fights against it, but today wins the pain. Big time.

Most annoying is that I never can predict what day will come. Will it be a good one, or a painful one. Although pain never goes away, there are days I almost forget I feel it. Those days I can lift the world on my own. Today, regrettably, is not one of those days.

That’s the thing about pain… it demands to be felt.

Today I will just pretend to be ok… we will see what tomorrow brings…

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