Sunday 9 July 2017
It’s not easy to handle lupus.
It is not easy to be in a relationship when you have Lupus because it is difficult to stand next to a person who has limited resources. Plus if that person is me it’s even worse since I also have a shitty personality.
Today more than usual. Today is already a shitty day and I’ve just opened my eyes.
It’s 9.20. I don’t know how the fuck it is possible since I never wake up later than 7, but the fact that the hens were screaming at 5 may have engraved. I’m pissed. All my usual yogic bullshit about positivity, dealing with negative things as a moment of growth and concentrating on breathing have vanished into thin air. In fact I don’t recall that I’ve ever thought anything like that.
Now I’m just angry and scared because I know what it means to wake up late. It means it will be a shitty day because I’m hungry and I’m tired and sick and I don’t have the strength to do the sun salutations before breakfast. This combined with taking the tablets later than usual will turn into pain in the joints. Also I skipped the appointment with my bowels that will continue to absorb toxins that will give me an headache. Today Frankie is home so I have to make sure to take the necessary precautions so that my discomfort does not turn into an argument.
When I thought all these things I finally decided to get up. I take my PPI and make breakfast. While I wait for the religious 20 minutes before eating I watch Frankie eat breakfast and start planning the day.
“Let’s plan now what we want to do today”
He looks at me disconsolate as if to say ‘ let me at least have breakfast in peace. ‘
“So it’s a beautiful day but yesterday we were all day at the beach and frankly today I would do without. If you want to go there we have to skip something else. I did not train yesterday so if it’s okay with you, today I would do a little yoga but you have to consider that I might not be able to help you make dinner or set the table. ”
“There’s no problem for that”
“You always tell me that there’s no problem then you forget and you see me sitting on the couch while you’re busy in the kitchen and you tell me ‘ Go set the table it’s almost ready! ‘ and that makes me feel bad you know. If it is a problem I do not train but today is a ‘NO’ day and I want to make sure you know from now so we do not argue. ”
I can breathe a breath of relief now. I put my hands forward and I can do little by little and even if I finish the spoons/energies very soon at least I warned him. I get my tablets and get up.
We opt to stay at home and browse all the shirts to decide what to give. After feeding the hens and laying out the stuff we sit on the floor of our ‘ spare room ‘ and decide whether every single garment makes us happy or not. It is a tiring process physically and emotionally but we manage. While I tidy the last things Frankie cooks lunch, I set the table. After eating he makes me the fateful question:
“Do you want coffee?”
I’m torn. I know that for you NORMALS (healthy people) there is not much to think about this question but for me it is a real dilemma. If I say no, my day might end here. If I say yes it is like a credit card: I can do much more today but I will have to pay with the interest tomorrow.
I opt for coffee. After lunch we go to collect wild plums behind the house while the hens graze happily, weed out the weeds and talk a lot. Today we decided to keep the phones off and the difference is amazing. Around 4 o’clock he goes to the gym and I decide to do yoga on the lawn. My movements are slow and controlled. I listen to my body without prejudice and I realize that I am extremely strong and flexible. The coffee is working but I don’t want to exaggerate. After about twenty minutes I lay down to look at the blue sky.
I feel extremely lucky and I think that despite everything I had a wonderful day.
I reflect on the fact that it is often not the bad feeling that freezes me but the fear of being sick. It makes me smile when people say that they admire me because I’m not afraid of anything. They would be amazed to find out how many times I feel a crippling terror in front of simple things like going shopping because I try to do a scan of my body to understand If I can make it but unfortunately it’s not always reliable. I often throw myself and do things anyway, other times I select what is fundamental and makes me happy and I only do what. And still organize things so I can always be safe in case I’m wrong (ex. Do yoga in the living room rather than go for a ride from which I might fail to return).
I reflect on yoga and meditation and how these disciplines help me in difficult times. If I had been equanimous I would have spent a beautiful day skipping the part of terror and anxiety. I am thankful that I have come into contact with these teachings even though I often cannot put them into practice. I am grateful for the blue sky, the chirping of the birds, my breath and partly for the coffee, but above all because even today I have learnt something.
I go back inside, I fold the clothes and do the ironing, I’m going to take a shower. My body asks for pity but my brain is hyperactive and something tells me it will be a difficult night.
I’m naked sitting on the toilet and I look at the shower with the same intensity of a ninja warrior who has to make the last climb to press the button. It’s the last effort, I know I can do it but despite being sending the impulse my legs don’t move. I decide to swing backwards and get up with a mental ‘Oppala’ (this is what old people say in Sardinia when they stand up) . After the shower I go for a very sexy dressing gown because you have to get the most out of these English 30 degrees and I also always have a reserve of energy for sex.
I’m going to dinner. While I eat Frankie asks me how I am and then adds
“Would you like to….”
He looks at me. I look at him. We both seem to know what the other is thinking but with him you never know so I do not unbalance.
Now he is no longer so sure of wanting to say it and whispers..
I Laugh. I laugh as loud as if it were the funniest of jokes. I laugh not to cry, not to quarrel, not to let loneliness sink me. He also laughs shyly and adds nothing else.
I don’t blame him. He doesn’t understand what it means to be me and I hope he never understands it.
The blue sky and the yoga have changed my mood and I’m not angry. I would usually feel a terrible guilt for not going out but not today.
Today I was clear and I do not deserve it.
The night goes sleepless as planned but the teaching is still fresh and I don’t think too much about how I’m going to be tomorrow. After all, yesterday I had no pain or headaches so I often mistake the predictions.
As I write it’s Monday and I’m ready to face the day one minute at a time. Without coffee, without prejudice, without the illusion of being understood, without having the presumption to know what my body will tell me but listening with an open mind.
Have a good day, Ele.