11 November 2018
What do I do it for? Why do I get dressed, why do I go somewhere and drink coffee? Why do I plan my feature? What’s the use if my plans are constantly being shut down by being sick? A heavy subject if you ask me. I find it difficult to write about. I don’t know where to start and what to say. Yes pieces, little bits flying through my head. I’ll do my best to describe what I think and how I feel on some days accurately as possible.
I’m not depressed. Sensitive as in more days of feeling ‘down’, highly sensitive and fucked up by lupus? Yes! Definitely. My glass is half empty. One person’s glass is half full and mine, well mine is half empty. That doesn’t mean everything is negative all the time at all, but let’s say the negative comes first to mind, then I process it and then I can see it more positive. Sometimes.. that’s what I meant with more days of feeling ‘down’ than the average person.
There you are, doing the dishes. The dishes which make your wrists hurt again lately. You’re standing at the counter with some sort of aching muscles in your upper legs and hips that you’ve been feeling for a week now and you don’t know how come. That you want to put some music on to get yourself a bit distracted and you want to sing along, but your lungs forbid you too. Standing there with a pounding headache which you take another set of painkillers for. When you’re done you take the pizza out of the oven, place it on the countertop to cool down a bit and then first sit down on the couch. Sit on the couch where you burst out in tears, but again, your lungs forbid you to cry, because it’s crying or breathing..
Recognize this? It makes me feel so powerless. You can’t do nothing, nothing but give in to your body..., again. This has been a reality on a lot of days, it still is and certainly has been the last month. Before this it was actually going pretty good lately which made me really happy. Don’t mistake my ‘good’ with your good, because ‘good’ in my world still sucks, but less fucky than the usual. THIS situation what I described , drives me crazy. Can you remember a time when you were so sick, like when you had the flu or something, and you thought it would never end? That you would be sick forever and when you’d get better you would be so happy and enjoy life and do fun stuff. That! That is the feeling I have for 3 years now (I’ve been sick much longer, but the last 3 years I don’t recover well or really slowly) every day! At some point you start to give up hope to get better. This is kind of how my life has been the last years.
It’s a series of so called ‘flu’s’, which goes on, on and off. This makes me mentally tired. This is what makes me want to give up sometimes and just lay down on my couch every day, raising my middle finger to the world. Like a numb little bird on the couch, not feeling or thinking anything. To engage in the world less as possible, because I can’t participate like any other person. It fucks me up, because I’m constantly hoping. Hope for a better future and hope that there will be a day when you feel better, but also because you are continuously being told to have hope and believe in a better future. It’s really hard to see a future right now. My body lets me down constantly. According to some I’m not trying hard enough, without a doubt, or there is so much more I can do (doctors, food, push though! Yes that’s what they say). But let me make this clear: as long as you haven’t walked in my shoes, lived a day in my head or lived a day in my life you don’t judge. Besides this isn’t about what others think. This is about how I experience things and the fact that it makes me mentally crazy: being sick.
When I came up with the name La La Lupus Land it was mostly meant to describe what it feels like and what it means to live with an illness, but also to show you how I deal with the future. It’s moments like this which make me feel without one, a future. I feel the helpless feeling slowly growing inside me. The fact that I can’t even think straight because I’m feeling so sick discourages me to do things. Even the most simple things like answering texts, lurking on Instagram or even just talking with someone is too exhausting. Whenever I feel like this I don’t see a future for myself. That’s hard. That’s what gets you in your head and your heart. It makes me hate the world sometimes, it makes me jealous of the people around me who just get on their bike and ‘just’ go to wherever they want to go, ride to the city and drink a cup of coffee or go see friends or family. Jealous of people who don’t have to think about doing something today, because they have something to do the next day too. Jealous of the people who have the body/health at all to go to wherever they want.
If I’m brutally honest I don’t think life is that much fun anymore. The last few weeks I get to do one thing (like groceries, nothing relaxing) and then the next two days I’m out. Can’t do nothing. Exhausted, my lungs hurt like hell and my head is pounding and hurting. I’m trying to write this, but I’m getting more tired and can’t even think straight. I don’t know how to explain how depressing this is. How incredibly terrible it can be. The feeling of hope that is taken away every time. How life with this illness breaks you at some days.
I know enough people and have enough friends, but I still get more isolated. I’m just less mobile, I often cancel appointments, I need to think about what I do and when I do stuff just in case I have an important appointment I need to go to the next day. Interaction with people can tire me out so much. Like when I have people over, the max is 2 times a week followed by a period of not having people over. Socially it’s downgrading It feels like my life has stopped most of the time. I’m limited.
I’m not even talking about the financial part and worries. Wonderful incapacity benefit isn’t it (is it really called benefit??)? Just hanging on my couch and getting money. Well for the ones who think like this, you should be slapped in the face, with a chair. It’s not like I got a lot to spend, at all. That’s all I want to say about it for now.
The frustrating part is that I’ve been out for more than a month already. I still have to visit one of my friends and her newborn (who isn’t much of a newborn these days). I still have to go out for lunch with my friend who is almost on the end of her pregnancy. I wanted to go and explore sports and stuff with my son, so he can choose what he wants to do. I want to do something relaxing for myself (no, being forced on the couch is not one of them). I was supposed to do so many things and I constantly have to postpone. Please. Please don’t tell me that I will eventually. I know this, I do. But all I can think of now is: I was supposed to live all these times that I was sick on my couch. I was supposed to live. That’s an intense sadness I have ever now and then.
Being jealous of people and what they do, has nothing to do with feeling like they don’t deserve it, because I do feel like they deserve everything they do and want, but I feel like I do too. And in times like this I’m not seeing it happen, ever. I know I’m having an emotional moment and when I feel a bit better I’ll probably feel stronger in my head and be more hopeful again. Unfortunately this up and down game has been going on like every season or so. These relapses for about a month (sometimes longer, sometimes shorter) are what makes it so hard to believe that I can do what I want to do and that there is a future for me too.
Besides this, there are medicine which can make you feel depressed and down and the lupus itself influences your mental health too. I did not read myself into it that well , except for the leaflet I read, but that’s about it.
What a violent truth. Or at least that’s what I think when I reread it. I wrote a lot of these bits and pieces when I was mentally drained. When I’m out of an emotional mood it’s hard for me to read sometimes. I find it really hard to share this, because it feels more private then everything else I wrote. I’m letting you take a look inside my head and normally I do it in a fun kind of way and that is good, but this is a whole lot more ‘naked-ish’. This, unfortunately, is part of it all too.
Thank you for reading my seventh blog. I’m going to lay down now, because I’m really tired ;). You know where to find me if you have comments, questions and stuff like that, yeah?
Love, Alcin
