Some people…

Sometimes Facebook is a good thing. I have learned so many wonderful people. All of them with big hearts for animals. I can enjoy so many stunning pictures and stories. Thank you all for that.

But there is more… sometimes we met people and there is an instinct connection. Even if you never met in person. Anoeska is one of those women I “fell in love” with. Like it seems we have a lot in-common. Even our journey to beat pain is alike.

I would like to set Anoeska in spotlight, her and a lot of other women/men, who dear to tell their story to a totally stranger and doing that, a lifetime friendship starts.

Just to chat from time to time gives me some recognition. Knowing there is someone who understands me, because she/he, really listens. Because our stories are parallel and we feel each others pain and joyfulness. Because we are open te hear what is not necessary said.

For that… Facebook, thank you. Without you, no Anoeska 🙂

Tamara, Nadine, Sam, Carine… thank you girls for being there for me.

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Hope is a promise…

I always thought “hope” was such an overblown term, such a falsified feeling. Till now.

Now I know hope is the only thing keeping us going on during hard times. It really is. No one can say or do anything that will make you feel better if you are on the age. It is such a strong feeling inside. There is no better tomorrow, till hope comes around. Hope is a promise, a goal. Hope opens us to new possibilities.

My chronic illness is killing me inside. Past days I have had so much negative thoughts, dark emotions. I truly wished I could vanish. In silence and dignity.

I can’t live my life with the body I have. My life was not ment to be that kind of horror. It was supposed to be magical. Not a battle against pain and fatigue every single day. But it is and will always be like that for ever. And some period of times, I don’t have hope. At all. And if there is no hope, there is nothing…

And still. There is beauty around us. Helping each other to see that beauty is a wonderful thing. Going trough it together is even more wonderful. Hope is a key concept to see that beauty even though life is hard on you…

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Pain is real, but so is hope.

No tomorrow…

when your body is full of darkness 

in your head is no more light 

when all the brightness is gone 

and all joy vanished 

 

what’s left?

 

when no words can relief the pain

no friend can share your sorrow

 

when your mind stops hoping for tomorrow

and tomorrow is even worse than yesterday

 

where is the place I can rest?

the time I can stop passing by?

where is the hope that gives better tomorrows?

where is my body that does’t hurt that much?

 

what’s left when illness is getting stronger

you weaker each and every day?

what’s left when you don’t know how to stop the life you have.

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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Say “no”, without explanation…

I have to learn to say “no”, without explaining myself.

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In general, I don’t have much problems saying “no”. The issue is, that I always, always explain myself. And there is no need to do so. And yet, I’m still telling stories why I did this or do that. Why? No idea. Maybe it comforts me?

Bart and I have no children, like I have written before. Some people are wondered why. Instead of just saying “it is our choice”, I explain myself, almost apologising for it. The same when man asks why do I not work. An explanation about my illness follows. I could say nothing, or just that I am sick and that’s it. It is my business, after all.

People who know me well, say that I’m too good for this world. Even though, I want to be a good person. But I often have to remember myself that being good doesn’t mean being naive. And yes, sometimes I could think more about myself instead of others. But I’m working on it for sure! If you listen to me carefully , you can hear ‘no’ more often ;-).

You can’t please everyone. It is not possible, don’t even try. I have been there, done that. Not a success. So… now, I try to be honest with myself. Do the things I believe must be done. Try to help where I can. And say “no” where and when needed.

Do you have difficulties to say no? This tips might help: Click here