REHACARE.com spoke with the mother of two about her family life and asked how these two diagnoses impact her everyday life.
Katarina, you live with both MS and ADHD. How exactly do they manifest themselves?
Katarina B.: That’s right, I have a dual diagnosis, which causes different limitations in my daily life that are not actually visible. I received my MS diagnosis (so far a chronic incurable autoimmune disease that affects the central nervous system) in 2013 and due to the various symptoms, I was also diagnosed with ADHD. Unfortunately, both of these disorders don’t really work so well together. MS requires rest and takes a lot of energy away. Meanwhile, my ADHD requires lots of action and adrenaline for me to feel good in my body; stress makes me happy. That’s two extremes I have to juggle somehow.
How do the different symptoms impact your life?
Katarina B.: My MS mostly affects my daily life due to tremendous fatigue. Unfortunately, plenty of sleep does not help to combat this chronic exhaustion. It also feels very different from normal fatigue. Fatigue also impacts my cognitive functions. It’s not just my body that’s tired, but also my head. I am getting forgetful, get easily sidetracked, need an enormous amount of strength to concentrate on just one thing and am unable to think clearly at times. This type of exhaustion feels as if the last drops of strength are being sucked out of your body. That’s when ADHD comes into play and makes everything even more complicated. People with ADHD are sometimes labeled as being "fidgety" and this totally applies to me! Unfortunately, the combination of adrenaline and cortisol is rather unfortunate with MS because stress can trigger MS activity.
How does this affect your family life?
Katarina B.: My family and I had to learn to live with these limitations and grow up with them so to speak. My children were still small when I received my diagnosis. We quickly decided to discuss the disorders very openly with our children. The limitations associated with MD and ADHD have made me extremely sensitive to sensory overload. Yet everyday life with children is loud and active, there are tons of noises, children’s laughter and crying and lots more. Unfortunately, I sometimes become overstimulated, which can then also manifest in physical pain. Exhaustion is my biggest problem because it usually starts around 3 pm. But that’s the time when my children come home from afternoon classes and have to do homework. I have to muster up all of what’s left of my strength for this, which is enormously exhausting and taxing. The fact that my children have to grow up with a sick mother takes away a part of their happy childhood. Yet I still believe I can be a great role model for my children by having a positive attitude about all of it.
How does your husband respond to your limitations?
Katarina B.: My husband has stood by me since day one. Nevertheless, as the affected person you still wonder about the future: Will I become a burden to my partner some day? Will he need to completely take care of me at one point? How much can a person expect from his/her partner?
We found a good way of dealing with my different symptoms fairly quickly. The majority of them are invisible to others but my husband is directly affected by them. That’s why I have to clearly communicate and tell him if something is not working, when I am too tired and don’t have any strength left in my hands or legs for example. Oftentimes, my husband handles many household chores and children activities I used to handle. We complement each other well and sometimes just have to plan things more than we used to in the past.