The story of Lorraine
Due to my combined brain disease, I get chronic cluster headaches two to three times a week. If I have had an attack at night, I can be irritated by a lot and I am very irritable. And every day I suffer from continuous headache (Chronic paroxysmal hemicrania) with 6 to 8 pain peaks a day. These attacks cost quite a bit of energy. That’s why I try to charge as much as possible during the day so that when I pick up the children from school, I can be a nice cozy mother. I have been receiving a new treatment with a combination of medication and the Preempt treatment with injections for three quarters of a year now. This has ensured that the attacks are a little less intense and I have a little more of my life back. Unfortunately for me this is now the best achievable and there is no prospect of a cure yet. I enjoy life more now and appreciate the little things and moments. Something I didn’t do enough before I got sick. When I have put the children to bed, I am often exhausted. Then I look for some relaxation in a game or I watch a series. The energy distribution is difficult with my illness. Because the attacks cost so much energy I have to charge a lot. The spoon theory helps me to better distribute my energy. You usually start with 12 spoons a day. Getting up and getting dressed takes quite a bit of energy. For example, it already costs 2 spoons. Sometimes the spoons go really fast. Now I consciously choose the things I do, the way I do them. And so I enjoy life more.