“Now I know RA is manageable”

“Now I know RA is manageable”

"Listen to your body, while you can still make choices," says Thomas, who was recently diagnosed with rheumatoid arthritis. For him, continuing an active life involving running and his work as a blacksmith has been important in order not to let the disease take over.

Who are you?

My name is Thomas Estrin, I am 39 years old and I work as a blacksmith. I am self-employed and have lived in Visby for the past three years. I originally come from Stockholm and have lived in a few different places in Sweden. The reason we settled in Gotland is that we have been here a lot as tourists and dreamed of being able to move here. Here we thrive very well, avoid traffic and enjoy life at a different pace. I have two children, Smilla 1.5 years old and Adrian who is almost 4 years old.

How was it when you first got your RA?

In the autumn of 2017 it started in earnest, although it may have begun earlier. I started dropping tools while I was working. When I was sitting in the car, I had a hard time opening my hands that were holding the steering wheel. I was in pain and experienced a new kind of fatigue. I began to wonder if it could be something rheumatic. Both my mother and grandmother had had similar symptoms.

I went and checked with my health center, who did not find anything, but I also had an appointment with the insurance company's doctor. She had worked at a rheumatology clinic and did an incredibly thorough examination. The first suspicion was just rheumatoid arthritis (RA). Through her, I finally got to the rheumatology clinic at the hospital where I was quickly taken care of and diagnosed with RA.

When I had problems with recurrent pneumonia, seven times in one year which were happening more and more frequently, I had to wait with the insertion of methotrexate. The infection clinic examined my lungs and I was hospitalized several times when the pneumonia came quickly - often within a couple of hours. I could almost feel good and be working one minute and then in an ambulance on the way to the emergency room with a high fever the next. It was a difficult time. I felt that I ended up a bit caught between the infection clinic and the rheumatologist. When the "pneumonias" got better in a day with an increased dose of cortisone and when they rarely found any bacteria, I began to become more confident that it was about my rheumatism. I finally got on my feet long enough that they let me start with methotrexate.

Now we know that it was probably pneumonia that was caused by rheumatism. One year before I was diagnosed, I ran a half marathon and felt good for half the race. In second part I was much slower and by finish, I felt really bad. After a couple of days with fever, I finally went into the emergency room worried about my heart, but it was found that I had pneumonia. Possibly this was what made the rheumatism start.

How did you feel about the diagnosis?

When I myself began to suspect something rheumatic, I had no idea what it meant. I had no idea that I would be as bad as I was in the beginning, but thought more that when you have rheumatism "then you are a little stiff sometimes". I also did not think I would need to be medicated for life. It was nice to know what it was that was affecting me, but it was also dizzying and it felt like a big deal. All of a sudden I was a person with RA.

It was so much at once with the lungs and everything. I visited many different doctors and felt that they had no overall vision of what was actually wrong. They did not talk to each other, even though you would think it should all be put together to make an overall picture. I felt like a really difficult patient, even though I was often one step ahead and right in some things. At one point during this period of recurring "pneumonia," a good friend kindly asked me. “Could it be something mental?”

Now in retrospect, I know my friend was worried about me, but it made me wonder what colleagues and acquaintances thought. It was frustrating to think that people would start to think it was imaginary. In a conversation with the infection doctor, I mentioned this and his answer made me laugh a lot.

-We could print one of the X-rays on a T-shirt and show people all your "mental" ailments!

It was nice to confirm that it was actually what I had felt.

How are you now?

Today I’m pretty good. My treatment has been adapted and I do not have as many relapses as before, which makes me feel good most of the time. Some days are worse. I notice my body feels better when I work and am active than, for example, when I have had a holiday and not eaten my usual diet and have been more sedentary.

Above all, the annoying fatigue has gone since I started with biological medicine. The pain can be excruciating, but there is a saying: "The blacksmith who is not in pain when he or she wakes up is probably dead!"

In other words, I'm used to having pain here and there!

What do you feel good about and enjoy doing most?

Running. It has been very difficult to get started and of course, it is not always enjoyable, but it is worth it. I also like to be in the smithy forging horseshoes, among other things. It is a kind of therapy. Then it's to be with the kids, the family and to do things together.

What feels tough?

My biggest fear is probably not being able to do what I want to do. Like running for example. I feel worst when I do not move. I have always been very active and it was mentally hard not to be during the time I felt the worst. When I have been out and about, it has been easier to get through it and feel OK. At home, it has been tougher.

I thought "is this my life now?". It made me angry, a boring husband and annoyed dad. I hated being around people whose lives just felt so "successful", far from how I felt right then when I just had so much pain. Finally, I contacted the rheumatologist to get some therapy and tools to deal with the thoughts. The counselor became some kind of intermediary there who I could talk to about this stuff and who knew what it was like.

How do you want your loved ones to treat you and your RA?

I do not want anyone to feel sorry for me. At the same time, I sometimes feel that they may not really understand. I did not know much about what it is like to have RA myself before I got the diagnosis.

What questions do you have about RA?

I would like to know and read more about exercise. The stuff I see seems to be aimed at women over 60 who have not exercised that much before: it is all sit-ups and water aerobics. For me, that’s not so attractive if I have run marathons and lots of races and exercised all my life.

I know very little about the disease so far. I basically got a folder about RA. Most things work just like before, while other things actually sometimes do not, which is frustrating. I'm used to being able to decide on something, and then it happened. I want to be able to work hard so that I do not feel limited and for the most part do what I want to do! The competitive person in me has grown. I do not intend to ignore the disease, but I want to have control and influence it as much as possible.

Do you have advice for someone who has just been diagnosed?

I would say: "life is not over". Keep fighting and do what you want! Do not let yourself be controlled by the disease or locked in by it. Accept that it is there, but do not let it take over. I can compare it to when I've been out running lately. Sometimes my body does not work but I do not give up, I just switch to a little softer terrain. Listen to your body and test yourself!

Sometimes you can feel alone. I did for a while. I believe in encounters between people. So a tip would probably be just to talk! Maybe with people who have the disease or similar diseases. However, it is important not to place yourself in a compartment. Do not compare yourself with people who do not live the same life as you. It is not only people over a certain age who get RA. There are also those who are just like me. A 39-year-old father of two who shoes horses in everyday life, loves running and being active in my everyday life.

I also want to say that having RA is manageable. It really is. I may not have thought that when I felt my worst, but now I know.

Elsa is a CE marked medical device that is registered with the Swedish Medical Products Agency.

Elsa is currently being co-developed by designers, developers, researchers, healthcare providers and patients across Sweden. If you have any questions or feedback, please feel free to contact: hello@elsa.science 

Elsa is partly financed by SWELife, Vinnova.

Elsa Science AB
Västmannagatan 4
111 24 Stockholm

© 2020 Elsa Science AB