When your body lets you down

 

 

 If your body no longer functions as it should and you are no longer able to live a normal life - i.e. work and household, not to mention a social life - then you go to the doctor at the latest.

For me, it was like that. When I finally looked for serious help, I was so exhausted that I collapsed. Why was I so late to see a doctor? I was with a doctor before, but I got no help. I was told that I looked healthy, that my blood count was normal and that the virus (papilloma virus) that I had been carrying around with me since I was 23 didn't cause any complaints. At least not the one I pretended to suffer from. I was simply not believed and they assumed that I only wanted to avoid working. I was annoyed about the usual ignorance of the doctors, went home and continued as before: work, household, but I reduced the social contacts more and more, because I simply had no strength. The symptoms became more frequent and more severe.

Then I changed jobs for the third time because I was gradually no longer able to cope with the working conditions. Since doctors did not help me, I looked for new jobs that I could still do despite increasing physical problems. I was looking for jobs in which things were calmer and the pace of work was slower. Since I liked to work, am competent and I always did my job well, I never had any problems finding new work. At some point, however, my body and nerves stopped doing their job.

 

After I had the following symptoms every day for the hole day for more than a year and these symptoms did not disappear once during this time, but got worse and worse. I finally collapsed. I could'nt do this anylonger, I was at the end of my strength.

And before I really got help and was able to help myself, almost 10 years passed. 10 years just trying to survive. 10 years spent almost exclusively in bed or in a closed room because all the noises and impressions were too much for me and I didn't even have the energy to take care of myself. 10 very long years...

 

And even after that it took a few more years until I was where I am today, as you see me in my videos. Years in which I often had to take two steps forward and three back, before it got to be two steps forward and one back. After every little effort a new "crash" until I learned where exactly my limits are. From then on it went up, very slowly, hardly noticeable, but I suffered fewer and fewer "crashes" because I now knew my limits and what to look out for. Little by little, I was reclaiming a large part of my life.

It was a long way to where I am today. I have to be very careful. Every overstrain, no matter how small (according to my current level) sends me into a new flare. But I live again. Finally I can live again, albeit extremely restricted.

 

 

Symptoms list:

 

Nausea, headache, pain in the muscles and nerves and joints, trigeminal nerve pain, stumbling, chronic cough, extreme tiredness and weakness, insomnia, dizziness, difficulty concentrating, hypersensitivity to light and noise, no stress tolerance, restlessness (as if I had drunk 3 cans of coffee), Muscle twitches, extremely dry skin and eyes (even eye drops did not help), back pain, itching, impaired vision

 

 

I went to the doctor and this time they believed me. I looked sick enough and the diagnostic odyssey began.

 

I gradually explained all the symptoms, I said several times that I felt like I was poisoned. Even told them that half a beer sends me straight to a hangover, but nobody came up with the idea that I was actually poisoned ...

 

That was in 2007. They gradually diagnosed the following: chronic HPV (I already knew that), myalgia, fatigue syndrome, Horton's cluster headache, multiple allergies, abdominal problems with PMS, anxiety (disappeared immediately after the HIT diet!), Extreme stress , Sensitivity to light and noise, recurrent yeast infections.

 

A possible cause was only searched initially. When the usual "suspects" were excluded, it was simply said that I had a burn out.

 

I was given various medications for the pain, which I did not tolerate, but made things worse. I was accused of imagining it, they said it was psychological.

 

I knew that it was not true - neither the of the burn out, nor that I imagined anything - I asked for further investigations, which I was only able to enforce in part through threats to report doctors for failure to provide help. But nothing was found there either. I was considered difficult and I was met condescending or aggressive, but they claimed I was aggressive because I sometimes got loud to enforce my demands. It was a fruitless undertaking, and doctors are usually unable to think outside the box. They rule out the usual suspicious illnesses and afterwards you are labeled as mentally ill.

 

The health insurance company cut my money, I sued and lost in 2016 after two years of complaint. Justification: I could not prove that all my problems aggravate me in such a way that I could not go to work. So they did not dispute the diagnoses, but that it could make me so ill that I could not work. Although the doctors described how my life is limited, it was not enough. I asked how someone who is suffering from depression, for example, proves this, I even invited them to move in with me to see how it restricts me. No reaction. After the explained reason for the dismissed lawsuit, I wonder how it can be that anyone is given any long-term support. Social system? If you are sick and unable to work, should you be looked after? The reality is different. I get no money, no support from the state, neither sickness money, unemployment benefit, nor social assistance. According to the court order, I'm not sick or restricted, so I should go to work.

 

I had already taken everything into my own hands, I searched and never gave up. In 2012 my husband found a page about histamine intolerance - a lot fits and I asked for a test that I had to blackmail again.

 

The first success: I am histamine intolerant and I started the appropriate diet. I suddenly felt better!

 

In addition to omitting certain foods, the diet also means that you should avoid all additives in your food and eat everything fresh. Furthermore, you have to avoid all stress. This includes everything that can stress the body, including cold, heat and overexertion.

 

The result: The headache almost completely disappeared.

 

What is histamine intolerance (HIT)? If you want to make yourself smart, you can read a short version here. HIT There is no better and more detailed page about HIT.

 

 

Unfortunately, I didn't feel better in all areas. The pain in the muscles and nerves remained, just as before. And I was still very often sick, I was extremely tired and became weaker and weaker. I suffered from shortness of breath at times and my heart started to trip. It was clear that it wasn't just the HIT that was to blame, because I followed the diet and the HIT tips without exception.

 

And then the next thing hit me. In early 2013 I developed Graves' disease, an autoimmune disease in which my own body attacks the thyroid gland. I also got the typical symptoms of Graves' disease. Autoimmune diseases are often triggered by stress, and my body had been more than stressed for many years. My blood samples on Graves' desease were so high that they were no longer measurable. Radio iodine therapy killed my thyroid before it could kill me. Now I have to take thyroid hormones for the rest of my life.

 

Despite the stopped thyroid problems, the symptoms mentioned above did not go away.

At the beginning of 2015, I went to Germany for a medical marathon, paid for everything myself, and started looking for anything that could possibly be considered. A very competent doctor who did not give up, even when nothing was found again (apart from a VIT D deficiency and a selenium deficiency and the diagnosis of fibromyalgia. Fibromyalgia is made as an exclusion diagnosis. If the usual suspects are excluded regarding certain symptoms, then fibromyalgia is diagnosed.), finally had the idea to call a colleague who works as an environmental doctor. This man listened to my case and I was introduced.

 

Well, many words in a nutshell: after a few tests and examinations, he did another genetic test.

 

 

He found the following:

 

My body does not detoxify in time, which means that various environmental toxins are not metabolized and discharged quickly enough. My symptoms are poisoning symptoms, which fits perfectly.

 

I genetically lack two detoxification enzymes and others no longer do their job as they should. Many people lack such an enzyme, but then other mechanisms take over. But if more is missing, it will be difficult. At a young age, the body can compensate for the damage by other enzymes and mechanisms, but with increasing age and corresponding physical restrictions, the typical symptoms of poisoning appear and increase steadily. In addition to VIT D and selenium deficiency, the doctor also found a zinc deficiency. Selenium and zinc are needed in the detoxification process. My body had increasingly resorted to it, lacking alternatives, and depleted the reserves.

 

People who have such limitations can develop ME / CFS.

The medic wrote the following in my diagnosis:

"... these patients very often complain about a chronic fatigue syndrome or an MCS (Multiple Chemical Sensitivity) or a chronic fatigue syndrome."

So basically this is my further diagnosis: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome ME / CFS, because if you look at all the symptoms for ME / CFS, then I basically had ALL the symptoms there. But ME / CFS, like fibromyalgia, is a diagnosis of exclusion. So you can't prove it. The diagnosis is not made until all other possible diseases have been excluded and a certain number of symptoms are present in the symptom list. For me that was more than true. And even today I would get the diagnosis ME / CFS with this procedure (according to the categories here in Sweden, I don't know exactly what they look like in Germany or USA, but I assume that it is not extremely different), because although if a large number of symptoms have disappeared or have weakened to the point that I no longer lie in bed for half the day, they are still there and immediately reappear as soon as I don't stick to my strict plan for “health”. As soon as I do just a little too much, I suffer a so-called "chrash", a worsening of the symptoms after physical and mental activity.

ME / CFS is considered incurable. Basically, they don't even know exactly what is causing the disease. Virus infections can cause them, but some develop insidiously. I know what is causing my ME/CFS - a multiple enzyme deficiency problem. I went the opposite way to diagnose: first the cause, then a name. If you have been diagnosed with ME / CFS and do not know the cause, I advise you to have your enzymes examined. But what exactly causes so many enzymes to “weaken” so early at the same time (because not everyone with genetically missing enzymes develops the clinical picture as extreme as I do), I don't know either. A diagnosis is still missing. And when science is ready to explain that too, that is probably written in the stars. This may also be inherited.

 

The therapy:

Selenium, zinc and VIT D substitution.

Avoidance of all environmental toxins.

 

The doctor was delighted to hear that I already lived in the country, in a house that had been empty for 50 years before us, and that we had happened to be completely non-toxic during our renovations.

 

And there I am now: HIT diet + healthy living and I'm much better! The nausea and pain in the nerves and muscles improved significantly. The tiredness decreased, the energy increased a little. At least as long as I stay on our farm in as poison-free an environment as possible. As soon as I even go shopping and be exposed to exhaust fumes, a thousand fragrances and the like, I feel worse immediately. I am particularly troubled by volatile substances because one of the missing enzymes is responsible for this.

 

I've changed a lot. Eating organic, i.e. pesticide free, is just a piece of the puzzle to support my health as much as possible. I haven't finished learning yet, I keep thinking of new things that can be changed. A lonely island or a farm in norway would be best to escape poisons in the air, but we can't afford that. But our small farm in Småland, in southern Sweden, is not bad either.

 

To give my body enough time to regenerate, I have to rest for about 12 hours, otherwise I don't have enough strength for the day. I go to bed between 8 p.m. and 9 p.m. Later always means too little energy the following day. And I rest several times during the day for 10-30 minutes.

 

I have to pay for everything myself, even for the most part of my tests regarding vitamins and minerals, because the doctors here (despite today's evidence from Germany) don't think I'm poisoned. And that, although I'm really better for the first time. How ignorant can they be just because I have shown myself to be a grown upp, made yourself smart on the Internet (a red cloth for doctors!), didn't dance according to their pipe and found out what they would never have thought of?

 

 

 

Life is not going according to plan. You can try to plan, you can do things and pull yourself through with enough self-motivation, you can organize and create opportunities and you can start experiments - over and over again. You can choose to never give up. But you can't expect anything to go as planned. It doesn't work without flexibility and certainly not without a good dose of will. Do not expect any great help from outside, you are the only one who can really change and make a difference. You are entirely responsible for yourself!

 

But: Doctors, authorities and the like should do their job and not stand in our way, as was the case with me and still is! We have every right to request certain help, tests and treatment attempts. It is my and your responsibility to see that we get this right. And of course we are responsible for doing what is good for us and doing it consistently. (If you want to lose weight, you cannot eat cake again and again!) I have taken responsibility for myself from the start and do what I can to be as healthy as possible. Sometimes it takes years to get the right diagnosis, like mine. But giving up is never an option. You have to look for something that will keep you afloat during the hardest times, give you a task no matter how small it may seem.

 

My plan for my life was really different. I wanted children, and I never got them either. Instead, I worked with children for many years. I was an extremely athletic person, still had so much to do (climbing mountains, hiking through countries), instead I spent ten years not going under, not losing my last muscles, and already after a short climb up the stairs, I puff. I have rescheduled, over and over again. And I don't expect so much to change. Of course I have plans, but I don't expect them to be implemented as I thought.

 

 

And another sentence that many may not like:

 

Who knows that certain things are good for him, that other things harm him and who then does not change anything - consistently - is not feeling bad enough!