- Your story moved me very much and you are such a strong woman. Please tell me about your fate…
(Daisy): I started my own business in gastronomy and at one point I had aching limbs and at one point I couldn’t get up either. But then that was gone again and in the evening I went to bed and tomorrow I couldn’t get up. I called my father and my then best friend slept over at my place and spent the night. Then I went with my father to the hospital in Freudenstadt and they couldn’t tell us exactly what was going on. My father then got so involved and went to the public prosecutor, who then got me out of the hospital. Then I went to the University Hospital in Tübingen and in Tübingen they had to resuscitate me and put me in an artificial coma. They didn’t have to do what I had then. If you read my medical report today, the doctors wrote down exactly the illness I probably already suffered from. At that time the doctors spent several months looking for what I might have. They took my blood every day and sent me to various laboratories because the disease was so difficult to find out, because I did not have the exact signs of the disease. My disease is called systematic lupus erythematosus (autoimmune disease), which means that the body attacks itself. As a result, I got meningitis, and this inflammation went to the spine and inflamed the nerves there, so the nerves are now scarred and no signals are getting through. I went to hospital in December 2011, the disease was diagnosed at the beginning of 2012 and I was in hospital until November 2012. At that time I was also paralysed down the neck, I couldn’t breathe on my own, for example. Then everything happened bit by bit. (I could slowly move my right arm, my right index finger and so on). I had to learn everything again.
2 How exactly does all this affect your body in everyday life?
(Daisy): For example, I have to take a lot of pills so that my illness does not have a new attack. This disease has the same effect as MS. I am well adjusted by the medication. (We) or he (Daisy’s boyfriend) helps me well and we look for alternatives or stop taking pills. If I notice that I am trying the tablet and see what happens – of course I always consult my doctor. For example, we also started a bee therapy* where I could stop my cortisone because I gained a lot of weight. We always look to find other ways. I also had chemotherapy back then, which lasted over a year and did not help.
I take bee products (apitherapy) and my friend goes to the beekeeper and gets bees and these bees then sting me, like on my back for example. This bee venom works well, but of course only if you are not allergic to it.
(Daisy’s Partner adds): About 3000 cells die in the places where the sting was and these cells reproduce in an increased form. We hope that the nerves will eventually send signals to each other again. This therapy is not covered by health insurance, which means we pay for it. In Nagold, for example, there are doctors who charge 10 Euros for a bee. My friend stings me up to 40 bees at once during this therapy. So it is very cost-intensive.
- What or who motivates you?
(Daisy): I have learned a lot in the hard time. Learned a lot about who my real friends are – even who I can count on in my family. In the beginning there were so many I thought were my friends, but the longer I was in the hospital, the fewer I became. The person who has always been there for me and who has visited me every day is my parents. I think if I hadn’t had my parents, I would have given up. They have always been there for me and have always given me strength. They never said that they couldn’t do it anymore and they always tried not to cry in front of me. Sure, when you hear that your daughter is coming back to life, it is not easy. And yet they were always there for me – no matter what I had done wrong before. I think thanks to my parents I have so much strength and I think there is so much strength in everyone if you have the right support. People who love you and who can strengthen you.
I was not yet together with my boyfriend at that time and I knew him from school. He knew me as a runner and still entered into this relationship with me – no matter whether I was in a wheelchair or not.
4 What does your typical everyday life look like?
(Daisy): My typical everyday life: my boyfriend has restructured a bit for me. When we weren’t in this flat yet, I lived with my parents and of course my everyday life looked different there. But here it is like this: we get up together and have breakfast. He goes to work, then my father comes and we go shopping together. Afterwards I cook for myself and take pictures for Instagram. I do the housework so far, just what I can do. Unfortunately I don’t have a therapist at the moment, because I couldn’t get along with my previous therapist. And here in Pfalzgrafenweiler, there is no practice that can afford what I need.
- Does that mean to wait for a therapist ?
(Daisy): I have now asked the therapists here in the area when they could afford it and they either contact me or I am unlucky.
(Daisy’s Partner adds): The problem is the legal situation in Germany. She needs physiotherapy and lymph drainage. The latter has to be done in bed, which means that the therapists would have to come and do the lymph drainage before I go to work. As I have different working hours because I work in the field, I have to re-arrange it and the problem is that the law says that you can only have one practice. Because every time someone comes, you are allowed to claim compensation for the distance you have travelled. The legislator does not pay for two different practices, i.e. one practice must offer and provide physiotherapy and lymph drainage. And just because you are a physiotherapist does not mean that you can do both – you need special training. There would be practices that would do lymphatic drainage and another practice that would do physiotherapy, but because of the hard costs, this is not done because only one practice pays the travel costs.
(Daisy adds): In the meantime we have reached the point where we are allowed to take practices from other counties.
(Daisy’s partner adds): We also had a problem with rehab once: we had the first rehab measure in 2016. As I work in the health care system, I struggled for 3 years (including court hearings) because experts thought it was too fat, although it was clear from the medical file that she had gained so much weight due to the amount of cortisone. But the experts said that it was because of her diet. In 2017, we applied for treatment near Dortmund ( Samuel Koch from „Wetten Dass?!“ was in treatment there). This clinic is the first in the world to specialise in robot-controlled therapy (approx. 7000 Euro/week). In Dec 2019, the court case in which the assumption of costs was refused on the grounds that it is not a facility with health insurance approval, i.e. it is a private facility. Four health insurance companies cover costs because they have special contracts with the institution, their health insurance company does not have this contract and therefore they refuse to cover the costs. There are always obstacles in your way. There is evidence and documentation from the WDR* and NDR**, in which success stories are presented. For example, there was a pregnant woman who was given an epidural injection that was contaminated, which caused her to end up in a wheelchair. The health insurance company also refused to cover the costs of this operation, which she then paid for herself. After the health insurance company knew that her case was improving, they paid the costs. Today, the woman is no longer paraplegic. This means that the health insurance company can pay for these therapies – but they always say that it is not possible, the law says. It is made difficult. For example, Daisy wants to work, but the Employment oOfice says she cannot be placed because her illness can come back in waves and you don’t know how long she would have to stop working if it happened […]. The problem is the if the Employment Office places her, they have to organise a driver for Daisy to pick her up and bring her back – the Employment Office would have to pay for this, which they don’t want.
6. Where do you get the strength to be so positive?
(Daisy): My family and friends give me the most strength. And of course my boyfriend. Without my family I think I would have given up already.
7. Apart from your body, what else has changed? And would you say that this has also changed things positively?
(Daisy): Some things have changed. I don’t have the same friends I had back then. I know now who I can and cannot count on. I don’t have an insane number of friends any more. My attitude towards life has changed, what is important and what is not. The general opinion: in the past I always liked the latest mobile phone and had so many wishes. Today I think about how to get healthy or how I feel Life can be so short, it can be over so quickly […].
8 If you were to change something in the world, what would it be?
(Daisy): Oh, I would want to change so many things (laughs). I met so many sick people when I was in the hospital. I would make people happy a lot more. I would make people who you know won’t have long to live happy, so that they would see that they are not alone.
I would change the world so that people do not only think of themselves. That people see when other people need help, not just with wheelchair users, disabled or sick people, but everyone needs help somehow. Unfortunately, charity is completely lost. Life is simply too short to be so spiteful towards each other.
9 If you had three wishes, what would you wish for?
- I would wish that every sick person has a wish
- That I will get well again
- Of course money is not everything, but money makes life easier. Above all, you notice it when you are sick.
My beloved Daisy,
I am more than proud to call you my friend. It has been a great pleasure for me talking and laughing with you during our interview in January. I cannot put into words how strong you are and promise you to always be there for you whenever you need me. I thank you from the bottom of my heart for your friendship which has developed after our interview. You are loved ! Aby