"My RA will go alongside me, but on my terms"

"My RA will go alongside me, but on my terms"

Måns Lööf lives a busy, active life both professionally and in his free time. He was recently diagnosed with rheumatoid arthritis. After that, it has been about learning to live with RA and living based on what is healthy.

Who are you?

My name is Måns Lööf. I’m 49 years old, married with two children aged 18 and 22. I work as a nurse and CBT therapist in child and adolescent psychiatry. I am also a lecturer and educator and hold training sessions throughout Sweden for the sports movement.

I maintain a high work pace by being careful to keep an outlet in my life where I can channel my life balance. Outdoor life is a high priority for me. I need to have the opportunity to enjoy and experience things. It could be anything from cycling and climbing to dog sledding. I love to enjoy life and this is for me, pure pleasure and happiness.

I often get the question "how do you manage everything?". I usually answer, and I know this is a comment that might provoke people, that I do not watch TV. But the fact is that if you count how many hours are usually spent on the sofa in front of the TV, then you can see the time that we could instead spend on a bike ride to the forest to pick mushrooms.

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How was it when you got your diagnosis?

I was diagnosed in November 2019. Actually, I’d already had symptoms in the spring. I made a big investment in terms of training and was captain of a large group that attempt to cycle around Lake Vättern in under eight hours. In May, I started to have pain in my joints, especially two fingers and my left foot, and linked that pain to the fact that I was exercising a lot. Before the competition, I noticed my body did not react as expected. I could not reach my usual intensity level and did not have the same capacity as before. During the competition, I even had to step down from the group.

I kept trying to adjust to make it work and trying to figure out what was wrong. Then everything went downhill fast, from 100 percent to 20 percent, then my body crashed. I went to the doctor and the test results told us it was rheumatic.

My sister, grandmother, and my grandmother's mother all had rheumatism, but I never imagined I would get it too. At the same time, because I have experience of healthcare and I have had these strong women in my life, I felt that it was possible that this was something that could be managed.

How has it been for you recently?

I have been feeling relatively well since I received my diagnosis and the medication seems to be working. My plan is to cycle 300 km this year and I have had a lot of great experiences this summer paddling, cycling, and hiking. It went very well until two weeks ago when my holiday was over. Then I had a relapse. All of a sudden, I went from lying on three to four on the pain scale every day to lying on eight to nine. I could not exercise and I was in pain all the time.

Have you reevaluated things in life?

For a while, I thought I could go back to living the same way as I did before. In psychiatry and psychology, we often talk about acceptance. I can buy that, but I myself have chosen not to focus on acceptance itself but more to think and figure out how to learn to live with RA.

I have a very hard time with the word illness. I am healthy, I will always live my life according to the healthy part and never let the other part take over. It's not like I'm disrespecting my RA, I have this road in front of me and I want to have a lot of fun on that road. I do not accept that I have rheumatism but it can go alongside me, on my terms. We will see how we can get along that way.

I think I have always been humbled in the face of life. But when, for example, a while ago I was cycling through fields of clover, I remembered that not long before that I was lying in pain thinking I would never be able to do something like that again. Then I felt incredibly grateful. I have had to re-evaluate things, such as not having such high-performance goals anymore, but I will continue to fully enjoy the activities I do.

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What are your keys to feeling good in your everyday life?

Positive thoughts. Key number one is that I think positive thoughts when I wake up. When we wake up in the morning, we have an active stress hormone in the body that affects our thoughts. It is based on the fact that our ancestors would go out and get food, seek shelter and try to survive. It is very easy for these stress hormones to lead to negative thoughts. I understand that it sounds cliché, but having a positive mind and giving myself clear positive things is important. Even if I am in pain, the positive thoughts are what take me further, up and away.

Wake up the body every day. Key number two is exercise. My grandmother lay on the floor every morning until she was 90 years old and did morning exercise. She is a very important inspiration. I go out and walk every morning and move my body. My wife and I do it together, as quickly as we can.

Get to know my RA so I can live life to the fullest. Key number three is to learn more about my RA. I do not know everything about my rheumatism, but I have noticed that if I do not move, I feel much worse. My recent relapse, I do not know if it came because I drove too hard or if it was stress. If I am going to get along with my RA, I need to get to know the signals. Maybe sometimes I need to take a step back and wait, and another day a step forward to dare to test myself.

The "Antelope Way" as we usually call it at home, is something I use often. When an antelope is being hunted, it does not have the same opportunity to secrete stress hormones as we humans. If they get too much stress hormone, they cannot break it down, which leads to poisoning. So even though they have a lion behind them, they can suddenly stand up and chew grass. So I use it myself, that sometimes you need to stop and just chew grass, like on an evening where I feel I need to lie down for an hour and just rest.

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What are your pitfalls?

Tell people when I am in pain. When I am in pain, I need to tell my family. They notice immediately, but I don’t want to tell them. I have a hard time communicating with people around me without sounding whiny. I need to work on that.

Drive myself too hard at times. Then I think part of it is also that I like to push myself. It's incredible and your body screams in pain - lactic acid - but it's not always very smart. I am a very committed person, which can also sometimes make me drive myself too hard.

What would you like to say to yourself if you met yourself just as you received your diagnosis?

I would have patted myself on the shoulder and said “It's so good Måns that you are sad and breaking down now. What a good thing you are allowing yourself to sit here and cry. That you allow yourself to crash.”

We have to put ourselves in the position of conscious presence. There are many scientific studies about daring to go into an emotion and look at it, study it and get to know how it feels when it appears. To respect it too, even if it may feel uncomfortable. Then we can choose how we want to handle it accordingly.

The feelings should be welcome and be just as they are.

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