“I'm just a little tired”

Stunning May beauty at Västra Grinderum and Jenny Dawn taking a morning walk with Molly the dog. Insta moment. or not.

The reflexive simplicity of posting a photo changed, which is a nice thing, when she realized she was starting to think about when and if it was smart to post nature photos during the day. What do others think? It's time to talk about the elephant in the room. “Life goes up and life goes down, my life is a little more so than other people's lives. But they've struggled over the years to learn how to accept that. Although it's hard to be okay with life being a hell of a rollercoaster. It's received some criticism…”she wrote on Instagram.

What did you scratch?

-I understood that my posts stuck in people's eyes. Someone felt a kind of jealousy: “Here we have to work from seven to four, and she is in the forest.” I hoped people would understand how I had to solve puzzles to put my life together, but on the other hand, I wasn't very open about my diagnoses. It's not the moments you're struggling that you choose to showcase on social media.

For many years she lived a routine life. With sleep breaks, not much effort. On a typical day, you wake up reasonably early, eat three eggs, walk the dog, sleep, eat porridge with some berries, rest again, and try to get through a “reasonable afternoon and evening.” A little evening walk is good. She smiles when she compares it to Skalman.

-I definitely live according to my sleeping and eating schedule. If I'm having coffee with a friend, I set the clock for two hours, and that's what I can handle. If I do something that requires a little extra effort, I should plan it so I'll be unconscious for a few days afterward.

There was another time, nearly fifteen years ago. She worked, was a new mother, and trained.

But something happened. Body hair is different. Bouts of drowsiness and lack of energy meant she had to retreat to work behind a closed toilet door to sleep.

-Otherwise I would have collapsed at the computer, unable to stay awake.

She had to come home from work, more often than her colleagues, with widespread symptoms of the disease. When she sought care, she says, she was lucky.

– I was fortunate to meet the doctor who immediately sent me to a great neurologist in Västerwijk, without him I probably wouldn't be alive today, and I don't think I would have been able to.

It has been seen, heard and achieved. After waiting and taking samples, the answer came, the doctor suspected. Narcolepsy.

– From the beginning I was on sick leave, and I received help to find new routines and adapt to my daily life. After the diagnosis, I was also given medication to keep me awake.

Nowadays, you only take medication when you really need it. The side effects are worse than fatigue.

– In order to be able to sleep when I need to sleep, I have to take sleeping pills. I had constant headaches, heart palpitations, stress attacks, and sleep paralysis, which is part of the diagnosis, in which you don't know if you're awake or asleep. They've gotten worse.

Five years ago, new problems arose. I found it difficult to keep food down, and I lost a lot of weight.

-I have been diagnosed with Crohn's disease. My doctor says that sometimes it's unfair that if you have one autoimmune disease, you might get another.

She is now taking her fourth medication against Crohn's disease. Others stop working, or cause allergic reactions.

-I get an injection every two weeks, which shuts down my immune system and then I get sick for a few days. If this stops working, there are not many options left, it should be an ostomy bag. It works, but it's not a fun option.

She's used to it. Finds joy in everyday life and days that feel good. Know that there are people out there who have it worse, and could collapse just laughing.

-I recover when I'm outside, what I can handle, and my dog ​​is very important. When I have to describe what my life is like to someone else, it sounds terrible.

But well-meaning comments of “maybe a little tired” are hard to accept.

-Maybe I should try to work out so I don't look sick.

She realizes that it is possible to sting her eyes when she is in the woods when others are working.

– But then I want to say “Switch with me.” My dream is to have their lives. If I could work eight hours, I would be thrilled.

What has changed the most since you received your diagnosis?

– Dreams of how you wanted life to be, and how you thought it would be. I think this is the worst. It is a great sadness.