Prolonged disease affects many parts of your life, which means more than treating symptoms. You also have to deal with managing stress and emotions, get support, and to come to terms with loss. Finding what works requires often an experiment. Some techniques work better at some times than others or work for some people better than others. If one strategy does not work for you at some point, find someone else or try to do it differently. Prolonged illness requires you have to think about your life. You are not able to restore your old life or the life you had planned to live, but you can have a different kind of life before you became ill. In other words adjust your life to your illness.
I'm Verdickt Vicky (my real name) and since 2008 CFS ( Chronical Fatique Syndrom ) patient. And this is my story. I 'm a single mom with two up growing children. The youngest was five and the oldest was 8 at that time. When I was diagnosed, I heard thunder fall in Cologne. Yes, I felt for a while not comfortable in my skin. With the flu here and the flu there. After work coming home so tired and not able to fulfill my household chores. In the morning no energy to get out the bed to take care of the children. This went on for a while. I got fed up and dared not stay long sick, afraid to lose my job. I had a full time job and a newspapers tour and was still washing dishes in a restaurant to make a living. Certainly as a single parent, you have more responsibilities. When I entered into a conversation with a work colleague that I was always so tired, it was flashing a light. She told me that she also had those symptoms, and that it could be Fibromyalgia. She advised me to take a moment to stop by her rheumatologist.
Well he referred me straight to the CVS reference center. After many tests and interviews, I was allowed to follow the rehabilitation program. We learned what CFS is, how it works and how we can address it. Accompanied by a psychologist and sessions with other patients made me not only felt not alone and had someone to talk to about it. Because you encounter really much misunderstanding in your circle of friends, family, work, doctors ....For many people it is between your ears, but that's what the doctors also think. Luckily I had a doctor who understood me. Every time I had a hard time, she had a sympathetic ear. She was also open to alternative therapies. As I myself had already begun a homecourse in stress counseling and aromatherapy. Because of this I got myself understanding that I was sometimes crowded in small things. Gradually I learned a lot more perspective, but sometimes it's still hard to accept your illness as it is. After struggeling for the studies, my patience rewarded and got my certicate of stress councelor and aromatherapist. I wanted to learn about how the body works, just to inform myself, so I would know and understand what the doctors tell yoou about.
The packing of the disease on your social life is huge. When I found out that I had CFS, I had a relationship with Franky. A single dad with four children. He had clearly difficulties that I could not be as active in the household. The worst thing was that I could not accept myself that I could not do anything more. I, the busy bee, needed to rest after each achieved task to. If I did nottake some rest on time I was three days in bed, perish in pain with no energy.
Often my partner took care of the children, vacuuming, cooking. But I refused to admit that I was at the end of my rope and stood trembling cooking or ironing. And often I didn't take the rest rule in mind, with the result that I again had to take a bed rest. And the consequent common guilt that you are worthless because previously I did two times more than now !! I was 36 for god sake. Ultimately, my relationship faltered after 4 years. And I was not even so bad as the other patients in the rehabilitation program, they were the whole week bedridden.
I refused it to let it become so far with me, I wished to remained active, resulting in the occasional three-day crash. Even if someone told me I looked good, I took it not as a compliment because it didn't felt like it. Emotionally you get a crack, even your confidence gets a big dent. Because you know you're not healthy. An outsider sees only a perfect healthy woman standing in front of him. You will also receive comments in the sense of "Well, you would not say you have CVS, you're going still heavily in the back." I also do not want them looking at me as if sick, but the disease brings so much inconveniences that can sometimes the comments are hard. Socially, I'm I can come to visit you for a tea because I'm tired. Then the answer is: now I sometimes get tired, come down then you have some relaxation. They did not understand that to take the car and drive up to it all took too much energy to do it.
There is a whole list of comments you face every day. The time that I felt responsible for my illness is over. I have learned to deal with the fact that I have CFS. For those who do not like that my house is not always neat, well they are not welcome anymore!! With the rehabilitation program I was doing well for a time, I had support, more energy. I could still work out 8 hours a day or do my housework but I was 3 hours active. After the rehabilitation program fell away, I fell into a dark hole. Suddenly no more buddies to talk about it, no psychologist could give more tips and tricks if you had a hard time. The Belgian health insurance ( RIZIV) decided to discontinue the program due to expensive !!!!! What meant, The goverment said that your house doctor shoul treat you. That's impossible. The house doctor has no education, no scientific research into CFS.
Let me tell you something, the doctors don't know nothing about CVS !! They open the umbrella screen and tell you it is between your ears, it's a depression ...Now it's worse now every day. More pain in muscles, joints, neck and shoulders. Long sitting hurts, long lying in bed hurts. This constant pain sucks all the energy out.
Recently I moved to Hungary because the warm climate it did me good in the summer. So I went to recharge my batteries three times a year. The thermal baths did reduce the pain. Now I go every week 2 times to the thermals and massage. When I went to the rheumatologist to obtain that treatment she asked me if they had tested me in Belgium for Lyme dissease. I said no, why? She told me that Lyme is also a possibility as the cause of CFS. A week later I was told the results. I tested positive. Now she sended me to Budapest for a more comprehensive test for Lyme. There was the test positive to.
After that test I bursted out in tears and asked myself what now, what' next, Because I knew the road would be very bumpy to convince the Belgian doctors that I was really sick. That's a story for later to tell. You won't believ your ears what i'm gonna tell you the next time. So keep posted.
Bibi make up queen
PS
Since my courtcase in Belgium I started a facebook group for chronical ill patients who has court cases with the health insurance. I give them advise how to win their case. I'm a Fighter and with that facebook group it is a indictment to the Belgian gouvernment of health to enforce for recognizing diseasses such as Crohn's, Lupus, Lyme, CFS, ALS...
