Just me and my brain

Disclaimer: this is just about me and my health. This post is a post I will refer to whenever I mention my illnesses so it’s all in one easy post, instead of me having to explain everything time and time again. This post is NOT meant to diagnose yourself. My symptoms aren’t a tell-all  nor does it mean that you are ill too. When in doubt, go see a doctor, they will know everything because, you know, they actually studied for years.

Hi, my name is Liselotte. I’m currently 24, I have three cats, 500+ books, an incredibly loving boyfriend, and I’m chronically ill. It always sounds so dramatic when I say that, “chronically ill”. It isn’t that dramatic, honestly. Well, that’s a lie, it is pretty dramatic, but for me it isn’t anymore. I’ve been ill for as long as I remember and it took almost 24 years to even get a diagnoses, and today I’m going to explain it all, just so whenever I mention anything about my body, I can refer to this post, so it’s all easily found! It’ll probably be a long post, and if you can finish it all you are my new best friend. Well, let’s get started.

I got diagnosed with ADD when I was about 13/14 years old. My school decided that ADD was bad for their reputation and they pust my down a level (there are three different (main) school levels in the Netherlands), because they didn’t want me to bring down their score. Luckily, things are lot better now for ADD kids, but still, what even IS ADD? Isn’t that just something made up by parents?

No. ADD is a real thing. A very, very real thing. Nothing annoys me more than people pretending it doesn’t exist! It is a real neurobiological issue, which is a fancy way of saying it has to do with your brain, and quite a lot of kids get it. Luckily, not all of these kids still have it in adulthood, but I’m one of those that actually does. It isn’t a pretend disorder, it does really ruin things for you if you let it. Now that I’m an adult I know how to work with it, but 10 years ago I just didn’t know at all, and nobody around me either, so it actually made things worse, haha. My personal symptoms are:

  • Incredibly forgetful (really, REALLY forgetful)
  • Easily distracted
  • I fail to finish a lot of things, no matter how important
  • I have no organization skills (though I’m getting better at it now that I’m an adult!)
  • Hyperfocus: When I’m REALLY into something, I can easily spend 6+ hours doing that one thing, so I can read quite easily for example.
  • Massive mood swings
  • Depression and anxiety
  • Sleep issues
  • Losing everything all. the. time.
  • I cannot deal with stress
  • Difficulty getting along with and understanding other people (though when other people have ADD I get a long really easily with them).

 A lot of these symptoms will be back with other things, as it’s highly likely that I’ve got ADD thanks to fibromyalgia. It’s the reason why I had to quit my Bachelor in Education, because my school refused to help me with my ADD and they kicked me out. Again, it’s all about those numbers in the Dutch schoolsystems! People with ADD just thing a little different than people with regular brains, so it took my boyfriend a little while before he got used to my brain. After really understanding my brain, he started to work with kids that have ADD, ADHD, or autism, so I guess we were meant to be, haha!

2018 was a big year for me. I didn’t do anything special. It was just a meh year over all, but 2018 was the year that I finally got diagnosed with what’s wrong with my body. I’ve got fibromyaglia. Isn’t that a made up illness as well?

Honestly, I used to think that as well. Mostly because people told me it’s such a fake illness. But now that I actually know about it, and read about it, it’s actually a real thing. The funny thing about fibromyaglia is that doctors are still unsure whether they should categorize it as a neurological issue (as it’s because of our brain that we’re ill) or if it’s a physical issue (as you feel pain in your body). But they almost all agree that it’s because of our brain that we feel ill. Basically (very basically), your brain is made up of a lot of links to tell your brain what to do and what to feel, but those links don’t work very well for people with fibromyalgia, so those links say there’s pain somewhere and your body will feel that pain, but there’s no  reason to have that pain! Again, this is very basically explained, there’s a lot more to it, such as that there’s a lack of certain chemicals in the brain which cause a lot of issues as well. If you want to get more in-depth, the NHS has an amazing page on fibromyalgia, and explains it really clearly and easily!  I usually explain it as a neurological issue that causes my body to attack itself, which is a very basic way of explaining it, but people tend to take that more seriously as just saying fibromyaglia.

But, what are my symptoms?

  • Pain. Pain. PAIN everywhere! Not all the time, but I’m used to quite a bit of pain, so when I’m really in pain, it’s so badly that I can’t even walk, sit, lay down, use my arms or sometimes even breathe. The pain is mostly in my hips, shoulders, neck, knees, and back.
  • I dislocate my hips, shoulders, knees, tailbone and even once my jaw (in my SLEEP mind you) quite a lot. Dislocating my tailbone is especially painful).
  • I am incredibly stiff. I’m that stiff that the doctor in the UK thought I had meningitis because I couldn’t put my chin on my chest (this is one of the symptoms of meningitis!) but I was never able to do that to begin with. I was a dancer for more than 8 years, but I was never flexible because of the fibro. It’s especially bad in the mornings, I get up and it’s like all my bones need to readjust.
  • Fatigue, I’m always tired, no matter how much I sleep. For example, when I’m writing this I had 11 hours of sleep, and I’m STILL tired.
  • Fibro-fog: I am incredibly forgetful, I will literally forget what I’m talking about mid-sentence. I will forget anything you ask me, I will forget your name, I will forget we had plans, I will forget what I asked you, I will forget everything. This is something I struggle with the most, not the pain, the forgetfulness. My boyfriend will ask me to do something, and I will turn around and I already forgot what I was supposed to do!
  • Headaches, as my pain is mostly in my shoulders, the pain will cause headaches
  • IBS (irritable bowl syndrome)
  • Rosacea
  • Anxiety and depression

It’s quite a list isn’t it! The interesting thing is that the symptoms aren’t constant. One day I can do everything, the next I’ve got so much pain I can’t do anything. It gets worse with stress and even the weather, The more stressed I am, the more pain I have, but I’m a very stressed person! Anyone can get fibromyalgia, but I probably got it from my own birth, because it’s likely that my mum has it as well. Not a lot of people get it from birth, it’s just my luck, haha! Because of my fibromyalgia, I’m afraid to get pregnant, as I experience pain more intensely than people who don’t have it. SO that’ll be an interesting experience when it does happen! I don’t really mind having fibromyalgia, I’m happy it has a name, that I can live with it, but it’ll never go away, and the forgetfulness is the worst part, for me personally. I can deal with the pain, as I have my own ways to deal with it. Hot baths help, pyjamas help as they are warm and comfortable, dresses help, but there’s not really a way to help with the forgetfulness.

I think that’s it! It’s quite a bit, I know, but I felt like it needed to be known if you are a regular reader or if you are chronically ill as well. People like us don’t get taken seriously often, because they are usually invisible illnesses. If people can’t SEE your pain, your pain doesn’t exist in their eyes. But as you can tell, I do have some serious issues, there are days where I’m not able to walk at all, that’s not fake, that’s real. We tend to pretend that we’re fine, so people take us more seriously or don’t judge us, but we need to be visible! We need representation! We aren’t pretending!

The thing is, these issues are my normal. Sometimes I’m talking about something and I forget most people don’t have these issues, so I probably forgot to mention quite a few. I did mention I’m forgetful, haha! If you have any questions, don’t be afraid to ask them, as we don’t learn anything if we don’t ask any questions! 🙂

In case you wanted to know how hard it is for me to focus, it took me about 3,5 hours to write this, and I’m a very fast writer, haha!

If you read this far, thank you. I really appreciate it, honestly. Thank you.


4 thoughts on “Just me and my brain”

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