Miss complains-a-lot

03 June 2018

Complaining... oeeeehh that's what I'm good at. A little too good if you ask me. See I think if you spend a whole lot of days on the couch and you see your loved ones living their lives and planning and doing stuff you want to do, you will become a little bit of a complainer. And because I can be a little dramatic of myself, I'll gladly take the complaining up a higher (complaint)level. The world keeps on going while mine is stuck. Or at least my life goes forward in like flea steps. I think it's just so unfair and that might be childish to say, but I don't care. I think the way my life goes it's unfair. It could be so much worse, I know, but me and my physical symptoms shall not be played down *pulls a diva face*.

On a separate note.. Do you ever experience these little signs? Like for instance when I want to type a negative word on my phone that he (my phone is a he) automatically changes it in a positive word. Like: Alcin, stay positive main hahaha.

And now le serious stuff. "What are your physical complaints Alcin?" I have multiple (vague) complaints. They don't call it an invisible illness for no reason. On the outside I look fine, but on the inside a lot of things can happen and àre happening. That's often difficult for other people to understand. I used to feel really bad about that and I still feel that way from time to time, but it's slowly getting less and less.

Complaints which I suffer most from right now are:

1. Fatigue. What a pain in the ass. And I'm here resting and resting and then rest a little bit more. You should revive and feel less tired right? No... well you go from 40% battery to 42%. Whooptie freakin' doo! I would be so much happier if I had some more energy. Sometimes I get so tired that it makes me nauseous. There are a lot of times I can't even think straight by fatigue, so we rest some more. Soooo much more irritated and angry. Those are the hard days.

2. Pain in my lungs/heart area. Some days when I talked or laughed a lot or cried all day ('cause sometimes it sucks so bad) it affects my lungs. Breathing hurts and I get short of breath too. "Alcin, you can't laugh anymore, don't talk to much and I wouldn't cry anymore either. So just live on your windowshill and shut up.

3. Number 3. The pain in my joints. If I lift too much or stuff like that my wrists and fingers will hurt a lot. Or if I repeat a certain movement it gets irritated a lot. And when I sit to long on the same chair my knees will hurt badly and I need to lay down. A trip to my beloved hospital (2 hours away) is not so much fun for my knees. Oh and when you have a few days in a row where all you can do is lay down on the couch my body will hurt all over because of all the laying down. I get kind of bed sore. It's one hell of a party.

These are the physical complaints. Then there’s these mental complaints too. Fear, guilt, frustration, anger, sadness, misunderstanding and then some. Maybe I’ll write about that some more in another blog, but for now the short somewhat simpler version.

It's hard to comprehend and find peace and acceptance in being sick. It’s not the flu that’s over within a week or so. This is something that’s going to be here for the rest of my life. I mean I already find it hard that I turned 33 this year whilst feeling like a 25 year old (in my head). So if you have the body of a 70 year old woman (on the inside ;)) and you have to live like that too, I find it hard. It messes with your head. I SO still do not agree to being sick. I don’t know why I think I have a freakin’ choice and that it’s somehow a ‘discussion’ with my body I can win, but the illusion that I can fight this so hard won’t let me go.

When you google lupus you see that depression can also be one of the symptoms. Besides that I take medication that has depression as a side effect. I don’t have a depression, but it’s restless in my head so to speak. I was so surprised to hear how many people find me so unbelievably strong and positive after reading my blog. I felt like crying, but no I can’t because my lungs will hurt *sigh*. I find myself everything but strong or positive. I’m feeling more weak than strong. So it feels really good to know how people see me.