Science and balance in life to deal with RA

Science and balance in life to deal with RA

Elin Uppström handles her days with pain by trying to accept that pain can come and go. That helps the adjustment go faster. At the same time, she is engaged in understanding her RA and the science of the disease. She would like to be able to log more automatically into the Elsa app to better understand what makes her feel good.

Who are you?

My name is Elin Uppström, 38 years old and at a busy period in my life. Our family consists of four children of 12 years, 10 years, 2 years, and also a new baby. For some time now we have also had two dogs. I am currently on maternity leave, but usually I work as an associate professor at Uppsala University. My partner and I work together. He and I have previously done research and doctorates in computer system science together. That means I am fascinated with apps and using them to monitor our lives. At the same time, I may have some skepticism about the belief that digital technology is a savior that can change everything, I simply know it is more complicated than that after many years both in research and working with IT.

I have had my RA diagnosis for ten years. I got my symptoms while I was living in the US and quickly became very poorly throughout my body. I had just given birth to my second child, but I now think that my RA had started after my first child, because I remember that I had a lot of pain in my feet. The doctors initially thought it was neurological but a blood test showed the signs of rheumatic disease were high. Shortly thereafter, I was diagnosed with rheumatoid arthritis (RA).

Today I feel good. I have probably never been in remission, with no symptoms at all, but it’s been quite close over the years. I have some symptoms, and a finger I can't really bend, and things like that, but it's not something that interferes with my quality of life.

How do you handle life with RA?

I notice that things that I do in my everyday life affect my RA. For example, stress makes me feel worse, so it’s important to me that I keep a balance. If I have too much work, it means I have to exclude other things I feel good about. It also makes me move less and sit at the computer more, which leads to increased pain.

Being overworked is a bigger problem for me than for a person without RA. So I have to be better at saying no and prioritizing, because I know I'll suffer if I don't. That means the rest of the family has to do more. Partly because I can't do some things, and partly because I get into a bad mood. It is important for me not to think of my RA as an excuse. It’s important both for me and my partner that I don’t just say "I'm angry because I'm in pain, you have to live with that". I try to think about being more cautious about overstretching myself in order that I can be there for myself and the family.

I previously worked as a management consultant before getting my position at Uppsala University.  being a parent of a toddler, getting life together at large and having a chronic diagnosis on top. It was not worth it. Since I have a limited number of days on which I feel good, I would like to make the most of them and not stress too much. Now I have more balance both at work and in my family and that means I feel much better. A little less work, more freedom and control. It’s easier to handle the not so good days when you have that extra balance.

I'm usually not very good at doing physical activity as much as I should. For me, it needs to be easy to fit into everyday life for it to happen, like cycling to work or going out into the woods with the dogs. If I had met myself ten years ago, I would have encouraged myself to be better at exercise. It feels like a decisive factor, especially if you look at the research on physical activity and RA.

Something I have noticed is that when I am so tired that I am seeing double, it is usually more effective to do something, preferably a physically challenging activity, than just to go to sleep on the couch. If I stir myself I often have less pain and am more alert the next day. I have tested it several times and it almost never fails. For example, when we are in Härjedalen and I walk the dog, I can walk maybe 5-6 hours over the marshes, I know nothing so good for dealing with the pain I feel after the full day's car ride it takes to get there. The more days I exercise, the better I feel. If you compare a day of walking to a day at work, when I spend at least as many hours sitting in front of the computer, the difference is even greater. If I get out into nature and enjoy some movement, I will gladly borrow several "spoons" from tomorrow. I do not feel that I have fewer the next day, but that they have simply been replenished. (read about the spoon theory here)

Sleep is also important to me. It is probably the single biggest factor that affects how I feel. I simply need a good sleep. I also feel the weather, especially changes in weather from hot to cold and humid air with rain and wind. The winters are more difficult than the summers and I think that is because I move less than. I usually make sure I dress properly to avoid getting pain in my hands and wrists.

elin-2

What is it like when you are in pain?

When I'm in pain, I feel blunt. If I get pain in a new place, it occupies a large part of my life for a few days. The world gets smaller, I retreat into a small bubble and can't really handle the world. Then I get used to it. I cannot really say whether the pain is lessened or if it is more a question of getting used to it. I usually think it's like having the flu. I find it hard to cope and everyday activities feel almost overwhelming. My way of dealing with those days is to not be afraid or disappointed with the pain. I have reasonable expectations and do not expect to be completely painless. It’s actually quite quick for me to readjust to everyday life. It is so individual with pain, but for me, it feels pointless to let it stop me for too long. So I  accept that pain can come and go for some periods. That's my management strategy. I know what works and does not work. I have come to know my illness and I think about it less than I did a few years ago.

RA is a bit clumsy in some ways. It is difficult to explain the pain and how it feels to others. When someone is a little under the weather or has hurt themselves, I almost think "nonsense, spend a day in my shoes." But I understand the pain of others better now, even if I can secretly get tired of people complaining about their cold.

Are you interested in learning more about RA?

Yes, it is important for me to keep up. and learn more about RA. I find it exciting when new research results come. I also often participate in various studies and studies concerning RA. I feel that it gives me more control and increases my interest in learning more. I simply try to stay updated and form my own view. It is a nice feeling to feel I am in charge! It will also be easier to go to a doctor's visit and keep track of how I feel. However, it can be difficult to remember how you felt at a certain time and then it would be good to have something that allows me to go back and remember. Like Elsa!

I think it is important to take what you read in, for example, Facebook groups, with a pinch of salt. You need to balance your vision with more science and fact-based knowledge. Pay more attention to verifying sources such as Janus, FASS and scientific articles you can find via, for example, Google Scholar.

I feel comfortable during my doctor visits. I am not overwhelmed and feel we have a clear partnership in how to ensure I feel as good as possible. I keep track of my values. It simply makes me safer in my illness.

What do you hope for future RA research?

It would be interesting to see more research on the long-term side effects of some medications. There should be studies of biological drugs now it is almost 20 years since they started using them.

A cure would be good! RA treatments should be more tailor-made to the individual. To look at the indications each person has, because people respond very differently to treatment. It would be good if in the future you did not have to keep and test different medicines so much, before finding out which treatment works best. Then you would not have to wait three months for an effect.

I think a lot about my children and the genetic part. Will they be at high risk of getting RA too? Will there be vaccines for them?

What would you like to see in the Elsa?

When it comes to Elsa, it would be interesting to know why you feel worse some days. Perhaps not simply through self-assessment, but from the results of blood tests. Some people are interested in steps and kilometers, I am more interested in the scientific stuff.

It would also help if most of the data in the Elsa app was logged automatically and I would have thought to invest in a digital device to wear daily, like a clock, if data is automatically collected from what I do. It would feel like a motivator then, that it was easily collected.

Logging things is good for motivation. If I saw a clear connection between sleep and pain, I would be more motivated to self-care. Gaining increased understanding gives me the motivation to change my behavior to feel better.

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 

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