"I want to get a sense of control"

"I want to get a sense of control"

When Johanna Heide was diagnosed with rheumatoid arthritis (RA), it meant that life had changed. Uncertainty has made it more important for her to enjoy the moments when she feels good, and accept that some days are better than others.

Guest blogger: Johanna Heide

“There is nothing in your blood we can link to your symptoms. We will refer you to an occupational therapist. " The nurse hung up. I was 25 years old, and I knew something was wrong. For several weeks, my fingers had been so swollen and painful I couldn't open food packaging or cook. Despite my symptoms, and a history of rheumatism in the family, I was just told there was nothing in my blood samples than could explain how I was feeling.

I knew something was wrong, and I refused to give up. Eventually, I got an appointment with a doctor and had a  blood test to examine the rheumatic markers. It showed I had a sharp increase in anti-CCP. The weeks before my first visit to the rheumatologist felt like an eternity, and my inflammation increased at a furious pace. When the day of the visit finally arrived, the stairs in my apartment felt like a mountain climb. Then I got my diagnosis: rheumatoid arthritis, RA.

Challenges and insights from a new everyday life

Now I am 27 years old and live in Linköping, where I am studying to be a civil engineer. Most days I feel fine, but I still find it difficult to find a rhythm to everyday life with the disease. There is a lot that is still new.

After a winter with many flare-ups and a lot of pain, I changed my medication. I am an active person with a lot of energy, but over the last year, my energy has just not been there. It has taken time to get used to it. Those days when I’m fatigued I just have to accept it’s one of those days. It's not always obvious to other people, and I can still be sad and frustrated. I think the most important thing I have learned this year is that pain is not permanent: it will disappear eventually. Remembering that relieves the worry for the future you often feel, especially if you are a young person with RA.

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It’s OK to just be

Exercise is important to help you feel good. At the beginning of my illness, I felt I was not able to exercise as much as I had before. Rather, I felt pressure to exercise as I read on a forum that it was important. I understand that there’s a need to encourage people, and that many feel much better when they exercise, including me. But when you are lying there and the slightest movement creates an unbearable pain, or you’ve had a long day at school and you’re so tired that just cooking feels like climbing Mount Everest... at those times I do not feel that I will feel better if I exercise. I’d feel better calling a friend or just watching TV. To everyone who is just discovering life with RA, I want to say that the exercise can wait for another day and that's okay. Don't push yourself.

Enjoy the good times

I have something called palindromic symptoms, which means I have pain in a joint for a maximum of two days. Then the pain moves to another joint or I feel perfectly fine. Some days I can ski, hike, exercise and work, while on others I can only walk slowly with a pain in my hip and can’t even write. I feel like my body is on a roller coaster. It makes it difficult to plan, but it also makes it even more important to enjoy the times when I can do what I want and to try to accept the situation when my illness stops me doing what I want to do. I just have to remember I know the pain will pass.

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Take control and think of the big picture

The Elsa app is awesome. I have noticed how important it is for me to get a sense of being in control of the disease, and Elsa helps with that. Of course, I cannot control the disease itself, but with the help of the app, it’s simple to get a clear overview of my symptoms and (hopefully) how they affect me. In addition, Elsa shows I am not alone: unfortunately there are many other young people with RA. But we’re stronger if we know that we’re not suffering in isolation!

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• Allow yourself to be sad. You know there are things that you need to change in your life, but you will also realize that most things are the same as they have always been.

• Talk to someone about how you feel. Neither of you has to have an answer to everything, but it can be good just to "unload" on someone: it stops you feeling lonely.

• Lower the bar. You may not be able to do things at the pace you used to, at least right now. This applies to your grades in school as well as your personal bests in the gym. To understand or explain your energy level, look up “Spoon theory”.

• Keep doing things that make you happy. A happy soul is a prerequisite for a happier body.

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.

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