How I deal with the pain

One of the things I get asked the most, not only here but also from some people who know me, is how I deal with the pain. As I have told you here, one of the symptoms of M.E. is pain. I don’t mean ouch-I-hit-myself or I’m-so-sore-from-the-gym kind of pain. I mean the kind of pain that never stops. It is called chronic pain, because of that.

I’ve had on and off muscle pain since I was a teenager. I have to admit it was annoying and painful having that, especially at such a young age. I would get out of the gym and the recovery of my muscles would be very hard. But looking back, it was nothing compared to what it is now. Not at all. Now?

Now I feel constant pain. The degree of it differs, sometimes it is more of a dormant and sometimes I feel like small (or huge, depending of the day) knifes are being put into me. I am no longer capable of carrying heavy things, sometimes if my bag is full or we go out on a shopping spree, I have to sit down and rest or Markus will carry the bags. It is always there.

Some people asked me how I can say that this isn’t the worst part of the disease. It’s simple. As short as it might have been, there was a moment this Summer where I lost the ability to understand people. I could hear the words, but I could not make them up into anything more than sounds. It was as if I was hearing a language that was unknown to me. Having experienced that, even if just for a few days, made me so scared. I was scared of calling my parents, I was scared to be in the middle of a call with them and out of the blue not understand them or to never be able to talk to them. Or anyone. Language and communication are my “things”.

I will gladly suffer daily pain, if that means I can understand what the people I love are saying, if it means I can keep writing and doing what I love. There are days when it is so strong that I will take a pain-killer (I swear on Adalgur, been using it for years for pain), but I try my best to control it with my own mindset. It is hard, I’m not gonna lie. Some days it even hurts sitting down or getting up! I have become much slower because of this, but I also know that if I force it, I will end up with excruciating pain the next day. It is something that is always there, always present.

 I have learned that if my brain is functioning, I can deal with the pain better. Which is one of the reasons why I have been taking the weekly infusions. When my brain has all the vitamins and nutrients, it will work better. If it works better and I am understanding everything and able to do everything, I can handle the pain better. Lately it has been in a sort of pulsating way, if this makes sense, where I feel waves of pain, constantly, but with low intensity. Don’t get me wrong, it is exhausting! But I know that when my brain is running on fumes, I get emotionally exhausted and then I can’t handle the pain.

Please keep in mind that M.E. is different to everyone who has it. Some have cognitive issues as me, some get days when they cannot move and are literally paralyzed. But I think everyone finds a way to deal with it the best they can. And this is how I am dealing with it. M.E. is part of my life now, but I refuse to make it the center of it.

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3 Comments

  1. Nora
    24. September 2015 / 10:52 pm

    You are such an inspiration Rosie! I love how you talk openly about this, even though it surely must be hard to live with this disease every day…I feel for you and wish I had half your strength!

    • 13. October 2015 / 12:21 pm

      Thank you Nora! It is hard to live with it, but I also want to bring awareness to it, that’s why I write about the illness. You’re stronger than you think 😉

  2. Nora
    24. September 2015 / 10:52 pm

    You are such an inspiration Rosie! I love how you talk openly about this, even though it surely must be hard to live with this disease every day…I feel for you and wish I had half your strength!

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