'Story of my life'

06 September 2018

 

(well not my whole story obviously)

 

Sometimes people do ask, sometimes they do not dare to ask and sometimes they don’t want to know. “What are your physical symptoms or what kind of flare ups did you have in the past?” Well I’m about to tell you a little bit about it. It’s a shorter blog, more serious, but every now and then some of my annoying humour ;).

Oh and forgive me if I don’t go into details, because due to the brain fog I forgot a lot of them. I need to tell you that before this I already knew I had SLE (my lupus), so I knew I had it. Plus that’s why I could (almost) immediately go to the rheumatologist.

 

It all started after I gave birth to my son. I already had some small aches, but like really really minimal. I didn’t pay much attention to it, because I thought it was because I was a new mom and it made sense that it would be harder physically the first months. No need to panic or anything. When my little man was about 4 months old he had his first big asthma attack and we ended up in the hospital for 17 days. At the beginning of those 17 days of hospital, we needed to go to another hospital. It was a children’s hospital and we had to go in an ambulance with urgency (it’s a 1 ½ hour drive, normally), because they were scared that he would stop breathing. It was the closest hospital with the right equipment apparently. The ambulance ride was so excited! I was riding in the front and despite my worries and the fact that the ambulance went really fast and I almost shit myself a couple of times, it was a thrilling ride and I loved to see all the ‘peasants’ move out of the way for us :) . That was the only fun thing. Ok back to being serious. That powerless feeling is such a terrible thing. Indescribable. Luckily we had a real fighter of a son and he recovered in such way that the next day we could go back to our own hospital. After that we spent some more days in the hospital, but after that we gladly could go home.

This all, that ‘burden’ was mine to carry most of the time and it was hard. Besides the fact that my physical symptoms became worse (it seemed to be rheumatic symptoms), it was mentally a real struggle too. Meanwhile my symptoms became worse, but still I kept on going like it would all go away. I had an awful lot of stress with all this happening which is not a good thing when you’re having a flare up in the making. Plus other things stressed me out. Like my work I didn’t get to go to and what I had to resolve every time, the support of my partner in that time could’ve been better and you get to know the people around you in times like that. Who will be there for you and who will not. Intense and not good all that stress.

I remember that a couple of weeks after that, I celebrated my birthday and I was really excited about it, but at some point I was in so much pain and I was so exhausted that I took a moment to rest in my bedroom, until I broke down. Tears were rolling down my cheeks. I couldn’t take it anymore. Everybody had to go, out of my house. I felt so guilty, but I wanted peace and quiet and the pain to be gone. I couldn’t even think straight. I know everybody was so surprised when I sent them away, because they had a good time, but I couldn’t act like everything was ok. Ever felt so bad that you just couldn’t fake being ok? That you couldn’t hang on for just a little bit longer? So I send them away. My friends remind me of this almost every year, the fact that I sent everyone away so abruptly. And we laugh about it, but for me it mostly reminds me of the beginning of a shitty time.

 

I think the monday after that I called in sick from work and went to see my doctor who sent me to the rheumatologist. As I sat there I was wishing she would give me ‘drugs’ so badly. Like right there with an i.v. or something so the pain would go away immediately, because I couldn’t handle it. Everything I did with my hands, wrists and elbows hurt so bad, because apparently I use all of these parts in my daily life to take care of me and my son, or when I had to walk or just get up in the morning when my knees were really painful. I just went on with life, because well… I had to. Nobody else was going to do this for me an I didn’t get much support at home.

Ok back to the i.v. Off course I didn’t get it, but she started talking about prednisone. NO. Nope, not an option. It makes me fat and it’s garbage and it will destroy my body even more than it already does. No. Just no. I was so opposed to it so she gave me something else. Something a bit milder, but it should help and take some extra paracetamol. Ok fine, let’s. Meanwhile the pain was so bad that I went to stay at my parents house, because I couldn’t take care of my little man anymore and taking care of myself was getting harder and harder too. The first night at my parents (this was the same day we went to the rheumatologist) the pain has gotten so bad that I cried all night because of the pain. I told my mom if I could please get the prednisone after all. Preferably at that exact moment, but that wasn’t an option. The next day I started the prednisone, I guess my mom took care of it, because I wasn’t functioning normal. Pain makes you numb, it makes you not think clearly. Terrible, horrible feeling. I felt like a total failure and guilty towards my son, my job and the people who took care of me. It was so lame, being sick. I didn’t have the time for that. And look at me now, 7,5 years later: still sick hahaha (cries on the inside for a moment).

 

They gave me a really high doses prednisone for a short period. With this I had the least chance of side effects. It could take a couple of days before it would start to work, before I would notice it getting better. Great… another of this hell days. The pain was so bad at one point that I couldn’t open the button of my pants anymore, I couldn’t light my lighter (yeah… I smoked. Bad… I know. Stopped for over 5 years now J.) and I couldn’t take care of my son alone. Changing a diaper was getting difficult already. A true hell. You wouldn’t wish this upon your worst enemy... although (thinks about ‘enemy’)... no, no I’m not that inhuman. Besides all of this, your body has to work so hard to keep functioning that it really wears you out. Tired as fuck. My mom even had to brush my hair at one point. That was a real barrier for me. Nobody does it like I do and I really wanted to do it myself, allright. Unfortunately I had to give in, because I needed to wash my hair at one point. You did good mom! “Two thumbs up!” I think that I was home for at least a month and a half. Thank goodness the prednisone helped and after a short period I could slowly get of the meds. After that I started at work and built up my hours slowly and get my life back sort of. It was still hard after that, because my body was still recovering and because my son was hospitalized more often after that first time. I think I had joint pain at least until a year after that and they gave me an additional medicine as maintenance which kept my body sort of steady.

 

 

You feel so extremely alone when you’re sick. It’s a feeling I can’t explain. I can tell you about it, but I can never make you feel how it makes me feel. Don’t get me wrong, because I’m not blaming or judging people. Because how can you know how to feel like someone else feels, but it is something you go through alone. It’s the most loneliest thing. I can’t sugar coat it. People expect you to somehow get used to being sick. No. You don’t get used to the fact that, in these days a 27 year old young woman, you’re living like an old lady. The years after this first flare I luckily recovered within a couple of months of each flare I had since then, but three years ago my body pumped the brakes so hard you can’t imagine. I lost my job, which I loved and which gave me pleasure for a lot of years, because of it. You lose a piece of your social life as well. You’re getting more isolated, because you can’t go out as much or because you’re feeling to tired to interact in any way possible. I find it difficult to live like this, to find my way in this, because I’m still fighting every day. Don’t tell me not to fight, ‘cause when it comes to this I’m the most stubborn person in the world. Advises and ideas are welcome for sure, but too much ideas can make it really difficult to choose. I just don’t need people to say: you must do this, you must eat this, you must go to bed earlier, you must do a cleansing or you must get out more. Don’t. Tell. Me. What. To. Do. (Period). It doesn’t work. Many have gone before you, but none have succeeded.

In my own way I try and certainly with some help of others I try to make my life as livable an fun as I can make it for now. I have a long way to go, because apparently recovery is a bitch. But so am I.

This is the first part of my enjoyment with lupus for years now. Please read that with sarcasm. I might have forgotten some details and I probably wrote it in a Speedy Gonzalez way, but hey this was it in a nutshell.

I keep saying this, but if you got any questions, please let me know. Or if you have a comment off course. Thank you so much for reading my blog again.

Love, Alcin