April 10, 2021
The princess and the cocktail
05 august 2018
“I’ll have the lupus princess cocktail dipped in some ADD/ADHD and some perfectionism sprinkled on top” said no one ever. This cocktail…
Once upon a time… there was a girl who, as results from her son’s ADHD test were positive, had an ADHD test. With the help of her mother and sister she took the test (because of her memorie/brain fog she doesn’t remember stuff and to get the most honest results they went with her, THA back-up).
It resulted in an eye opening conversation and findings about myself that I knew nothing about until they were said out loud, like I need a looooot of structure. That I think so differently about myself then others do or how they see me, but this was also something I found out during writing these blogs. When the moment came to discuss the results of the test I took, we all sat like I was about to hear if I got my diploma in college or something. Then she told the results… I HAVE ADHD AND ADD ! Yup.., it’s combined. Love it. It feels like a relief. Like pieces to the puzzle falling in the right place :) . So now what does this have to do with Lupus? I’ll tell you..
Do you have any idea how hard it is to be a perfectionist ADD’er with ADHD wíth Lupus and have a princess character? Well I can tell you it’s a real challenge and when I say challenge I mean it’s shit, but let’s call it a challenge. I want to conquer the world and I want to do it right in just one try (perfectionist), but since I have 200.000 thoughts per minute my head is such a freakin’ mess that I can’t arrange all my thoughts and then I don’t know where to start (ADD and ADHD). Then you want to undertake all these things so you can create some sort of rest, but also to gain more ideas and then you constantly feel the pressure to do things en be active (ADHD) despite your body screaming: Don’t !!! (the Lupus) and then I’ll act like a petulant kid, because I just want it to go my way (the princess). It’s like a confetti cannon with tacks which explodes in a sealed box. Not ok ! How can you be like this? Sometimes I just laugh at myself, because I just don’t know what to do anymore. It’s more of a sad, psycho laugh like: What the fuck am I supposed to do with myself?
See all these things are not caused by Lupus, but these are things which I noticed are making things harder to deal with the Lupus. A perfectionist, a princess character and then there’s the ADD and ADHD. Some shitty cocktail. I know I need to chose my words more carefully, because I know that that also has an affect on my mood. So I need to see it as all of this wil make this an even bigger challenge rather than calling it shit and hard all the time. Although it sometimes just is and that’s ok too. To practise this is a lot harder most of the time. The princess in me rises again: I did not fucking chose to be sick and I don’t want this. I is working on it though.
One of the things to create some rest is that I shortly have an appointment to decide if I will start medicine for the ADD/ADHD. You must be thinking more junk in your body? Well in this case I’m willing to try. All of my life I’ve been hearing that I think to much and that I shouldn’t be doing that. Like it’s a light switch you can turn on and off when you want. For a very long time I thought that something was wrong with me and that I didn’t fit in too well, because I didn’t think like others and my thoughts went just a little too far and often on a level where others were not and I don’t mean that in a better level, but just a different level. I could and still can think myself crazy. I’ve gotten better at letting things go, but on the other hand I’m really not. Sometimes it’s really intens. Another difficult thing about it is that when I have something in mind, it needs to be done or else I can’t get it out of my system. Now that I’m writing this I actually can see that this can be something good. As you’ll probably know about now I’ll forget about this good stuff/feeling in a heartbeat hahaha ;). Joking aside, I think it makes me more creative and that it makes me see things from other perspectives than other people would see it in and that can be a good thing. That’s the postive stuff. But as I was saying it causes difficulties especially now with my Lupus and I just would love to have that edgy side toned down a bit. Like when you have a headache and ibuprofen just helps to calm it down a bit. I hope it gets me some more peace of mind, so I’ll think less like a F5 tornado and have less stress which eventually makes me create more energy. I got me some theories going on in this head of mine, you don’t wanna know. We shall see.
My friend often calles me rebellious with a smile; hence the calling myself a princess, because I know I’m rebellious and a little petulant. Sometimes I think: I need to be saved. When I have bad days, I want someone to save me from this miserie and do stuff for me that needs to be done or that I wanted to do. I need to be saved. I’m a freakin’ princess who needs some freakin’ savings man. It sounds so weak and spoiled, but hey I can’t be King Kong all the time now can I? Plus I think this crown suits me well. I’m not really sure how I am supposed to get this behavior under control though. It’s a little bit of my character so it’s also who I am. I’m not good at making peace with things I don’t agree with. When I was still working and I had more social contacts and ‘rules’ I had to give in more to the fact that I couldn’t have my way all the time. It is something I want to create more peace in. I’ve got multiple books and tips from people around me and hopefully they will help me settle down my inner princess. Another we shall see…
So about the perfectionist in me… I find it an annoying little person. I always thought that perfectionists did everything right en got everything done, but they don’t. Oversly… When I get 9 out of 10 things done I still see the one thing I didn’t do. So that’s when I’m the most excited about having Lupus, not. Lord ! On some days I’m lucky if I get 2 things done on my ‘list’ and on some days just one and sometimes I get nothing done at all and you can do nothing but lay on your couch. The moments where I can do nothing at all are minimal for a while now so that’s a good thing: yeah !! But then I get greedy again and plan the world domination. And then the 5 tasks you have done aren’t enough and then you’re getting frustrated with yourself again, the ADD kicks in and you will get ideas in your head how bad it is to not be able to do all of those things on your list and then you’ll have 10.000 thoughts about it. It.. Is.. So.. Exhausted.. nothing is good enough and I always want more.
This is the shitty cocktail I was talking about. It’s not really working well together. These are special qualities and it is such a challenge to find a balance. But it’s something I will keep trying, because I am a perfectionist and I want to do it right and I must get it right ghegheghe (<- looks so stupid, say this out loud, who laughs like this? I’m still leaving it like this, because I can).
So not much about Lupus itself in this blog, but maybe these are recognizable things too for some people? Or do you have any other qualities who make living with Lupus harder or maybe easier? Tips on how you deal with yourself and your Lupus are always welcome ;).
I sometimes surprise myself that I post and write my blogs just like that, because it’s really personal and I’m being as honest as can be. Maybe some less curse words, but still.. very honest. Thank you so much for reading my blogs. Let me know what you think.
High fumb, Alcin