"Let we go"

08 May 2018

Ok so where do I begin? Guys, do I have a writers block already?? I didn’t expect people to be curious and that they would have expectations about my blog. I mainly thought it would be good for myself to write it down. I thought I’ll just write shit down and I’ll see if somebody wants to read it, but clearly people expect things from me now. I feel the pressure. Great ! I did get a lot of great reactions though. Thank you all for that !

 I’ve got ‘so many tabs open’ that I don’t know where to start. My head looks like a drawing from my son when he was 2 years old; a tangle. I didn’t want to start at the very beginning, because it’s cliché. Normally I kind of like clichés, but not this time.

I have Lupus. An auto immune disease where my body attacks itself. In easy words: there are bloodcells in my body who don’t understand that there are other bloodcells peacefully living next to them and therefor attacking them and destroying the other bloodcells. So bloodcells from the same community attacking eachother, sounds like discrimination. Omg I discriminate? My body discriminates, awkward…

Being sick is difficult. There is no manual for being sick and every person deals with it in their own way. Despite of the fact that people won’t notice much about me, I find it very hard to be sick. I had to quit working, I noticed my body declined more and more, I got heavy medications like chemothearpy and on top of that I am a single mom. No ingredients for a good delicious cake for so to say. I find life, as it is right now, hard. Not a challenge, but just hard. You won’t see it as a challenge, when you lie on the couch most of the time for the past 2,5 years. And that’s not even all of the time I’m dealing with lupus. I try to see it day by day what I can do and I try to make the best out of it, but it’s hard when you are a young woman with a 70 year old body. I mean I still feel like beyonce on the outside J, but on the inside I feel like grandma Yetta (from the show the Nanny). Although I think that even she is more energetic than I am. She always carries such a cool fanny-pack… Anyway to sketch an image of what I do in a day I’ll write down one of the most common/ “normal”days.

A day in my life:

· Get up and getting my son ready for school

· Have breakfast and then rest

· Getting myself dressed and ready

· Rest

· Do some grocceries and maybe if I feel allright drink coffee somewhere

· Rest when I get home

· Take care of my son when he gets home and maybe play with him

· Make dinner

· Do the dishes

· Get my son in the shower, read a book and put him to sleep

· Take a shower of my own

· Exhausted on the couch

I’m already exhausted when I get home from the grocceries and that’s not even half of my day. Write down what you do in a day and I think I won’t do half of what you would do on a normal day. When people read this and see me they don’t understand how this is possible. Me neither. I find it terrible when I think of what I used to do before I got so sick and what I can do now. And yes I know: don’t get stuck in the past. But they also say: easier said then done ;). The day as described above is a day where I feel average. I also have days where all I can do is lay down on my couch. And then there are days that I want to go on a nice day out as in have dinner (in another city) or going shopping, also known as force like an idiot ! The days after I pay the price. ‘Ding ding ding we have a winner!! U have won: a whole lot of shitty days’. I joke about it and somewhere I have to, because it’s a difficult and sad situation of which I have no idea when it ends or at least stays calm.

I’m glad I decided to start writing about it and to make it a little bit more known. Invisible ilnesses are just annoying and everybody should know. I think it’s shit. And so La La (fucking) Lupus Land begins.

This was it lovely people… my first blog. If you want to know, say or ask something let me know!

Love, Alcin