Despite saying yesterday that my heart isn’t in blogging anymore, last night I coudn’t stop thinking about what to talk about today. Very strange but as long as I am in the mood I should just go with it.
I came across this blog the other day and thought why not talk a bit more about Lupus myself? I have this tendency to take things as they come, there is nothing I can do about it so I just accept it and move on. Don’t bore other people with stories about how bad you feel. Or be honest when they ask “how are you?” as nobody actually wants to hear about you feeling like shit. It makes people uncomfortable and apart from the polite “I am so sorry” few can offer any words that will make you feel better.
At the same time I realise that by not talking about why you feel shit people take it for granted that I am a strong woman, who can deal with anything. You’re German, you have it in your blood to be strong and efficient (yes, the stereotypes ALWAYS come out but I take being efficient as a compliment, there is nothing wrong with that!). Sometimes I am not strong. Sometimes I want to be weak and I’m not allowed to be weak because it disturbs the impression people have of you and they cannot cope with the fact that actually, I am human after all. Ok, that’s a bit strong, but you get my drift. I don’t whinge about my condition, not a lot of people know that sometimes I am lying in bed awake at 5am, with tears streaming down my face from being so so tired but unable to sleep because I’m in too much pain. Or that every movement hurts in my bones, especially in my hips. No, people don’t want to hear about that. On one side I’m quite glad about it because there is nothing worse than talking about your illnesses and especially when you’re young (I’m not middle-aged because I am pretty sure I live well into my 90s so I still have a few years left to reach middle age). On the other side sometimes I just want a bit of sympathy.
Lupus affects so many areas, it’s easy to forget that for all those little things, like being tired all day, aching all over or being forgetful there is a reason for it.
I have good days and bad days. When I have bad days I feel guilty because I’m a rubbish girlfriend. All I want to do is go home after work and rest. Do nothing. Not having to wonder about what to cook for dinner, not having to decide yes, that’s what we’re going to have to eat, not having to hit the shops after work, not having to schlepp shopping bags up the stairs, not having to pack it away and not having to cook dinner. Not having to make conversation, not having to have sex. If I’m lucky, this only goes on for a few days. If I’m unlucky then I get depressed about not having the energy to do all these things and everything is simply too much. Those are the days when I stand in the kitchen and cry for no reason. And then I can’t remember what I was doing in the kitchen in the first place.
When I have good days I feel like superwoman. I cook the most delicious meals, I bake the fluffiest cakes, the flat is tidy, the garden looks good and I surprise John by wearing just an apron when he comes home.
Those days have been rare this year. But it’s only mid March, so there is hope
Being an optimist helps when you have an auto-immune disease.