​There is something hypnotic about bonfires. The sound of the crackling flames and the flickering warm light that grows stronger as the dark night closes in around you. The last rays of daylight are about to burn out and a friend who has kept me company for a few hours is on her way home again. With the exception of a couple on the other side of the pond, I sit alone by the water's edge looking into the flames. Behind me my hammock is prepared and ready with my sleeping bag. When I am asked if I think it's scary to sleep alone outside, the answer is always no. I have been on several solo trips and it doesn't bother me to sleep alone outside, whether it's in the woods or in the mountains. Therefore, it feels a little strange that tonight I'm suddenly feeling a little nervous as the darkness closes in around me. Horror movies I keep at arm's length, while trying to forget the ones I've already seen. But tonight it feels like they are so easily accessable at the top of my mind. The stars begin to appear in the sky that is about to turn into a dark shade of blue. The forest is now mere black shadows, but there is enough light left for the trees to be reflected in the surface of the water. It's beautiful to look at! At the same time, I have to admit to my selft that I can't shake the eery feeling. Tonight I'm reminded of the very human experience of being afraid of the dark.

The eeryness sticks with me as I start to wrap myself in the sleeping bag. An image from the "Blair witch project" flashes before my eyes before I push it away again. Not now! There is an old little farm, not too far from the pond. Thoughts that it might be haunted is simmering beneath the surface. I'm getting myself all worked up by the idea now. The nervousness is actually starting to make me tremble a little. Trying to calm myself down. There are no such thing as ghosts. Cell-coverage is low and sporadic, but I try to distract myself with the phone. Trying to think of something else. Someone sends me a text telling me that as long as I'm not near Retthellasetra I'll be fine. That's where I'm at. This must be a joke? My body stiffens and my eyes are watering up. It feels really silly, but the urge to pack up and leave is overwhelming. I'm sitting upright in the hammock, eyes wide open, while adrenaline is starting to pump through. Please say it's a joke! It turns out it was a joke. I take a few deep breaths  and lie back down again, slightly on guard. Tell myself that the rushed feeling is due to the chemicals in my body and that it will soon calm down. As with other dark thoughts and feelings, the fear of darkness also eventually lets go. There will be no fleeing home through the forest with goblins and scars. I calm down and finally get to sleep. There is nothing lurking around the water and in the forest. The scariest huldra here is actually me. And even huldra is allowed to be scared of the dark sometimes.

A little breathless and a little stressed, I lock the bike in front of the old school which currently functions as a vaccination station. The lady at the front door smiles through her face mask. Strange how the last year and a half has taught us to interpret smiles through face masks, or at least it looks like everyone is walking around smiling. I'm a little embarrassed that I don't have a face mask in my bag and ask if they have any extras. Explaining that I got a short notice. She nods and thinks it's nice that someone can show up at short notice as well. After a bit of fiddling, the mask is in place and I proceed to the check-in. A quick look at the watch shows that I 'm right on time. Still a little hurried, I talk a little too fast and search a little frantic around in my bag to find the box of Imurel. He calmly tells me that he only needs to see some ID and that I can show the box to the person giving the shot. I start searching my bag again  until he reminds me that I have ID hanging around my neck. The feeling of beeing rushed stays with me, and I hurry on to the lady who is going give the shot. The Imurel box reappears from the bag while the lady tries to find me in the system. I barely feel the little sting from the vaccine, and after a 20 minute wait I'm good to go.

Just like the body needs healthy nutrition, so does the mind. The picture above is a little mental snack hanging on my fridge. What I find to be one of the most difficult parts of the whole diagnosis is accepting having to live with the uncertainty of it all. The illusion of control disappeared and it has at times been difficult to know what I can influence and what is completely beyond my control. In the beginning, it was a lot about taking the pills, trying to feel better and waiting for the next check-up. Hearing that the test results kept getting better and that the medication was working. There was a kind of predictability and plan to it. Now I slip more and more into everyday life of living with the diagnosis, and this is where the real work of dealing with it begins. Learning to live with not knowing how it will unfold. It's important not to forget the mental part in the middle of all the focus on the pillbox, healthy food and exercise.

Social media thus becomes a bit of a double-edged sword. There is a lot to be found that can be a comfort and a feeling of not being alone with a strange diagnosis. But at the same time, it can also reinforce disasterous thinking. I don't recognize myself in many of the descriptions. I don't have any particular daily ailments or pain, I feel healthy and vital most of the time. My body seems to be working well. On the one hand, I am grateful that compared to these descriptions, my lupus is currently quite mild and kind. On the other hand, they trigger a small concern in the form of, is this what awaits? Am I currently just blissfully ignorant and naive? If I don't watch my thinking, it is so easy to spiral down into doom and gloom. 

There are endless quotes around the idea of ​​letting go and go with the flow. It's so easy in theory, but so difficult in practice. Sometimes it's so much easier to go into fixing mode, instead of just letting things unfold. Make a plan, stake out a direction, try to predict the future. The unpredictability of the whole thing can feel so uncomfortable, that it almost becomes paralyzing. The head shifts into high gear. Trying to find solutions to hypothetical problems that have not yet occurred and that may never happen. Like when I cycled home yesterday afternoon and feel that the sting on the left side of my chest is still there. Without warning my thoughts wandered from "should I get something special to eat this Friday?" to "what happens if I get a blood clot or heartattack while I'm home alone?" It sounds completely hysterical, but these thoughts sometimes come as an impulse and it's difficult to turn them off. Learning to let the impulsive thought just arise and dissolve again without spinning it further is an important part of dealing with uncertainty.

At the same time, it is the uncertainty that gives life nerve. It 's what pulls us forward. The excitement and thrill of what lies ahead. It can get better, it can get worse. The only thing that is 100% certain is that things will change. As the quote says:

​All good things come in threes. Third time valid. All good times three. Third times the charm For the 3rd time I am down to 5mg prednisolone and today is the longest I have been down to 5mg since I started taking prednisolone in December. A conversation with rheuma ward confirmed that the blood tests last Monday looked fine. Slightly low count of white blood cells, but nothing unusual. Do I dare to get my hopes up? Hopefully I get to stay down at 5mg this time. Because this little white pill is a powerful little devil. As the doctor in the podcast below says (46:38) lupus patients should keep in mind that medications such as corticosteoroids are toxic to the body in the long run. At the check-up in August, I told the doctor that to the extent that I can influence the dosages I receive, I want to use as little prednisolone as possible.

But even though prednisolone is poisonous, it's also life-saving. At this point I have been on it for almost 10 months, so my body has reduced the ability to produce cortisol itself. The body produces daily the equivalent of between 5-7 mg of prednisolone in the adrenal glands. With stress, trauma or illness occur, they produce more. When the body has been supplied with this in high doses and for a long time, the hypothalamus in the brain perceives that it's producing too much and asks the adrenal glands to stop production. In the same way that a muscle becomes weaker when not in use, the adrenal glands become a weaker producer, and must be "trained" back up again. Since the adrenal glands now have reduced their ability to produce cortisol, the body will not be able to produce extra if needed for stress or illness (Lupus encyclopedia). This is one of the reasons I should avoid stress. This may explain why the working days feel more fussy and tiring than it used to. It also makes me more vulnerable to the cold season that is about to start. A simple cold can quickly get worse than I'm used to. So even though I am very eager to ge off the prednisolone, this is still far ahead. Probably after I have been pregnant. And then the body will slowly but surely learn to produce cortisol on its own again ..

Sources:

The lupus encyclopedia
https://nhi.no/sykdommer/hormoner-og-naring/binyresykdommer/binyrebarksvikt/
​

I love this time of year. Each season really has its own charm and now it's time to enjoy the gifts of fall. Earlier this week, I picked some of them up from the ground. It's about 5 months since I stood bent over putting seeds in the ground, sun scorching my neck.  Now the seeds have grown into small and slightly weirdlooking vegetables that will soon be found in delicious stews and soups. There is something satisfying about cooking with self-grown vegetables. I know exactly where they come from and what they have been exposed to, or perhaps more importantly what they have not been exposed to.

Although the weather this week has not been typical for autumn, there is a coolness in the air, reminding of what's to come. The evening comes earlier and the candles light up faster. Wool sweaters, scarves and tights have been pulled out from the back of the closet. The thought of curling up under a woolen blanket with a good book while it's raining outside is starting to sound tempting. Actually, curling up under a blanket and taking a nap sounds tempting most of the time these days. But I think it's just the after work blues and not lupus related. I took some new blood test on Monday, meaning it's been 4 days and still no call. Guess it's safe to assume that all looks good. No news is god news!

An effective cure for after work blues is all these recipes I want to try. You might say that I've jumped on the fermentation wagon. With varying degrees of success. I have to admit I'm a little nervous when it comes to tasting some of my fermentation projects. Something has definitely happened to the carrots. The turnip doesn't look too good either! Could it be the rocks I've placed on top to keep them submerged? The whole crop of self-grown cucumbers ended up in the trash. A few floated to the top of the glass while I was away, creating a large lid of white mold. Sauerkraut, sun cabbage and kimchi, on the other hand, turned out ok. The fermented red onion was a big success and is almost finished already. So is this fermented buckwheat bread. The dough smells absolutely horrible, but it's become a favorite. I can't wait until it comes freshly baked out of the oven. And then I'll crawl under the wool blanket with a book!

​August is over and with that it´s the end of the summer months. For those of us who love all the seasons, autumn is also a welcome change of scenery. The sun is no longer as intense, and as SPF 50 is not so critical, my skin can breathe a little. There is a freshness in the air that has become noticeably cooler against skirt-clad legs. The birch trees along Steinsletta have been given golden leaves, matching the yellow fields. A formation of birds flies across the sky that seems extra blue. I have spent the afternoon with a friend and I´m on my way home. A quick visit to everyday life as it looks to most of my friends now. In recent years, there has been a serious change of season there as well. Most of them jumped on the family train with houses, husbands and children, and we are getting fewer and fewer left back at the station.

Whereas someone might envy me the freedom and all the free time I have, I feel a longing for the family life I did not get to create. "It's fine," I say. Trying to seem brave and unaffected. "Good things come to those who wait" they answer, but the voices no longer sounds so certain. It is difficult to admit to oneself that one feels envy. Envy of good friends who one by one slips into familylife. Effortlessly they manage work, diapers, baby cryes and sour crumbs. In the meantime, I´m sitting on the outside looking in, while the distance between us increases. How did I end up here on the outside? Why does it feel like I´m on the outside? I guess it just feels like that because I imagined life would be different by now. Maybe the expectations are my biggest problem? The expectations of what life should look like?

These are not new thoughts. They've been buzzing around before. They do less damage when you accept that they are there. When you´re not trying to override or replace them, just register that they are there and will soon disappear again. Replaced by the reminder that there are bigger and worse problems than infertility and lupus. In the end,  gratitude usually wins the internal tug-of-war with self-pity. My first lupus summer is over and with the exception of a tiny flare-up and slightly higher prednisolone doses, it went very well, considering everything I had heard. I look out at the fields. A sprinkle of drops from the watering system hits my face as I cycle past. It brings out the childish joy of water. I have to smile. It's not too late yet. Seeds are sown in the fall as well. Seeds that give nice flowers when spring comes.