How to be a single mom with lupus

18 February 2019

How to be a single mom with lupus.

Well first of all you need to have a kid and don’t have a relationship and you have be the owner of lupus. That’s it. I’m joking, but I actually don’t know. I don’t know how to parent with Lupus. It’s like I just... give him food, hugs and keep him clean 😂. Again I’m joking. (A little bit..).

Being a parent can be difficult. You don’t have to be sick for that. It’s difficult, but when you’re chronically ill and constantly fatigue it’s like running a race you can’t win. I try my best as any other parent would, but the amount of time I have to say no to my son is a lot and it hurts. Like going to the movies, if it’s not a financial thing it’s because my body just can’t. I have to choose between tasks in my house or playing with him, having enough energy for him. There are a lot of days that I have to choose to do things for myself or for us like cooking and doing laundry and then I’m so tired physically and mentally too that I can’t have the attention for him that I want to give him. That is one of the hardest things I’m dealing with. I feel like parents already feel like failing at times and I have that feeling constantly. I’m failing him. I don’t think he really misses things when we are at home, like going to the movies, going to parks, amusement parks or the playground. But he’s getting older and sees things around him, on the tv or hears the kids in school talk and wants to do those things too. Don’t get me wrong, he has everything he needs and he doesn’t have to have everything he wants, but on some days the most simple things can be too much. And I know that other parents don’t do these things on a daily base or every week, but still they do it a lot more than I can do and that is difficult for me to see. Even the most simplest things can be a real Mount Everest for me.

As I said the most simple things can be a Mount Everest to me. And when the fatigue is worse then normal, because I did too much for example, I can’t even think straight and get irritated way way faster. I then often tell my son that I’m so tired I can’t do anything for a moment and then I lay down and he watches tv, plays with his Nintendo or toys. His toys are a no go most of the time when I feel like this, because I can’t handle the noise. It’s hard, because on some days I need to do more than I can handle and the little man pays the price. Luckily I’m aware of it, I just need to stop myself whenever I want to conquer the world.

I try to focus on myself and my son, not let the world get to me, I try to control my thoughts, be hopeful and I do what I can, but it’s still difficult to see/know and that hurts. I try to do it my way and find our way to do things, be together and have fun. My son knows I’m sick and doesn’t know any better and I think I’m blessed, truly blessed with my son who is easy to deal with. He will survive this I mean, it’s not like he’s missing out on food or water or anything, but for me it feels like he’s missing out on life. He’s missing out because of me. There is guilt that I know I should let go off, because it is what it is and I can’t change the fact that I’m sick. I can change the way I look at it and be careful what thoughts I feed. I think I wrote that in my last blog too so maybe I should follow my own advice ! I’m really hard on myself and blame myself for a lot which is not even my fault, but that too is work in progress.

A week ago I had a sinus infection. A real bad one. It really hit me hard. I couldn’t eat for a week. When you’re chronically ill it’s like viruses (even a simple cold) get a power up. You know Super Mario bros? Well when you get that red and white mushroom Mario gets bigger right? That’s what happens when you are chronically ill and get a virus. It blows up. I couldn’t even get of my couch most of the times. Luckily my son was at school half of the day so I could sleep, because that’s all I could do. But when he got home I felt such a sadness, because I couldn’t even talk with him at times or pay attention. These days are mentally so shitty and I wish there was someone to take care of me and my son. I mean everyone is working during the day so they can’t help you and I don’t have a partner. We survived, but it also made me realise how fucked up it can be. How lonely it is to be sick. It also made me thankful for the better days I have now and I can go to my appointments and do my own groceries again. I even have another date for my birthday party, since I had to cancel that too.