Me current improvement 2: Who am I?


Well-Known Member
For now my name is of no importance. My health and disease history is.

Exposing my personal information:
  • By writing about my experiences I give away a lot of personal information. Please do NOT try and use this information to guess my true identity. If you know it by chance please keep it secret.
  • I do value my privacy so much because I live in a place where ME isn’t accepted to even exist let alone to be such serious disease.
  • There are plenty of critics around here that put ME patients down. If they’re bedridden they’re mentally ill or faking it. If they manage to shop once a week and buy five items, it’s proof they really aren’t sick at all.
  • Me being able to fight back at this disease in a fairly methodical way for now would be nothing but extra ammunition for these critics targeting me and fellow local patients.
  • I still have to pull all my energy and resources together to learn and try and push this disease further at bay. I still need help to get basic things done, allowing me to focus on my goal. I cannot afford and have no desire to waste precious energy on arguing with and fighting off these critics.
  • For those who believe I should step up in the open for the community: My strongest and most rare asset is my ability to get better in a systematic way for now and learn more about why I might get better by doing the things I do. I need peace and support to do so. Don’t destroy this opportunity for many of us! It is up to me to decide when revealing my true identity is appropriate.
My youth:
  • I was born pretty premature by standards of that time. It wasn’t extreme however. I had a low but not very low birth weight. People born quite early often have some health problems but I could not complain during my youth. Health was not perfect but acceptable.
  • I always had a strong vulnerability to the common cold. I had plenty long lasting bad colds.
  • I had natural quick muscles with surprising good strength given I did not had big muscles. I never had good endurance. Even when training regularly running longer distances during my teens I only got to average at best. Breathing and cramping muscles were the bottlenecks to better performance.
  • I had strong reflexes. I had average memory but my mind was excelling in understanding how things worked and making connections between things.
  • During my rapid growth period in my teens I often had fierce pain and cramps. Calcium supplements did help to some extend. Iron was also quite low and had to be supplemented.
  • I was a very emotional little kid and was clearly anxious. I learned from those experiences and by my late teen ages I barely had any stress.
  • During my late teens the strength of my emotions and intuition grew a lot and remained so for most of my life. Stress of having strong emotions remained moderate thanks to having learned to deal with stress during my younger years.
  • I was skinny and could eat whatever I wanted without gaining weight. Getting sick when eating too much however kept excessive eating at bay.
EBV and mono:
  • Close to hitting 20 I got down with mono. As I did lack two of the most distinctive signs of mono, swollen glands and fever, it was detected quite late after a few courses of antibiotics failed to improve my health. I actually was very cold and had very little energy. That was only surpassed and by great margin once I came down with ME.
  • Mono hit me at an inconvenient time: during my studies at university. Once I had the diagnosis I knew it is often a long lasting disease and it could cost me my year. I decided to take the time to pause my studies and get better first. Best decision ever.
  • When getting better however I saw the opportunity to save at least part of my year. I started gradually but soon felt I could up the effort. I did learn from a friend that drinking strong coffee when being depleted late in the evening could get me studying hard for another hour and fall in a deep sleep afterward.
  • That same year I learned that when I was really tired and kept pushing trough my limits I gained a sudden strong boost of mental focus and energy. I learned to use this effect with great results. Worst decision ever. It got me saving my year in full and learned me to live to the fullest in the coming years. I did however not realize I was living on borrowed energy as I was living on a natural high.
  • There was only one interruption. About a year after I believed I was healed from mono I got into a deep depression. I managed to get out without the help of medications or counseling. To those denying the seriousness of ME: getting out of this deep depression without help, while being very hard to do so, is still a walk in the park compared to the worst what ME has to offer. In hindsight I believe it was the toll mono did put on my body combined with my very strong push to perform very well too soon after getting better that fired back at me.
The turn of events:
  • By age 26 that long wave of energy came to a halt. I started to have very intense pain I had rarely felt before. Considering the chronic nature I had never felt such strong pain before. It was chronic but with a varying nature. Once I had very deep pain in my lungs, then it shifted to my abdomen, then it shifted in my abdomen... Later the pain even started to shift fast enough to feel it shifting. It was like a big caterpillar digging tunnels throughout my body giving me very intense pain where its dents currently were. That sensation of extreme and moving pain was near maddening.
  • At the same age I shifted from hardly experiencing any stress at all towards being one piece of stress on steroids. Note that I now strongly believe that this did not cause my disease but rather was an early symptom of my gradual onset ME case. There was no obvious reason I would have had so much more stress at that time.
  • Energy decreased but not as obviously and abruptly. I had learned in the previous years to squeeze the most energy out of my body and probably did with even more skill now. However gradually my efforts yielded less and less result.
  • Some time later I got a second but milder depression. This time I decided to take medications and get counseling. Again there were some reasons to get depressed yet I had managed greater adversity in my life without getting near depression. As I learned later deep exhaustion makes one so much more prone to depression. In hindsight getting depressed by these events was a sign of the increasing grip ME began to have on my body.
  • Within a year most of the depression was gone, but pain was not gone and tiredness became an ever stronger cloud hanging around me. I also began putting on weight easily unlike ever before.
  • By my early-mid thirties I was still working full time. But when I got home increasingly the first thing I did was to go to bed and rest even when hungry. When I had collected enough energy I went down to have some food.
  • When going to the bathroom to wash myself I couldn’t help me but to get into my empty bath tub and rest in it for an hour or so. I had to lay down and somehow the cold of the metal did me some good.
  • By my mid thirties as soon as I got back from work I very often lay me down on the hard cold floor just behind the front door to have that so much needed rest. I couldn’t get myself to walk up the stairs and get in bed.
  • I still managed to do my job fairly well, but only by learning to squeeze every bit of energy out off my body during my working hours and the increasingly rare social events I attended to. Minutes after I stopped pushing me so hard through the day I crashed almost like clockwork.
“It’s stress”:
  • For nearly a decade I had plenty of inexplicable symptoms that never showed up in medical tests. More then once I was told I imagined it. Some doctors acted less then friendly.
  • Most signs pointed to stress at that time. As every medical test showed up negative I began to believe that stress indeed had to be the cause of this all. Much of the changes began around the time I turned into a person consumed by stress anyway so it made sense to me.
  • I took on the challenge and tried to identify and reduce sources of stress. That included making lifestyle changes, learning to deal better with my strong emotions, digging up and resolving past events...
  • As a very sharp increase in pain often went hand in hand with an increase in other symptoms I started to make a strong connection between being in strong pain and having stress.
  • More and more I ended up questioning myself what was the particular source of stress that time when I had such sharp pain. A busy job can cause stress but in my younger age I had much more challenging periods with near no stress.
  • Now I know this idea was wrong. It did however gained me plenty of experience with dealing with stress and a relatively low amount of emotional baggage to deal with once I got really ill. That served me well later.


Well-Known Member
Welcome to the boards! I am glad to meet you, just like anyone else. I keep my identity private. I don't mind that you do. The point is that we learn and grow and encourage each other, if I understand it rightly. I don't need to know who you are. I just need to care about what you care about, if I am able.

IF you decide ON YOUR OWN someday to become an advocate by opening up your PRIVATE LIFE to the public about your disease, YOU will decide that and no one else should push you into it. I am sure they will ask, though, cuz if they are like me, we are all desperate for the hope. With statistics being as they are about this disease, we are just a drop in the bucket of the many suffering out there.

It is hard enough having this disease, then add to it the public eye and it increases the stress, which you do not need. I have been in the public eye myself, maybe not like you, but I have. Feel like a fish in a fish bowl. Hope you get some encouragement and hope on these boards no matter what you decide! FG

Get Our Free ME/CFS and FM Blog!

Forum Tips

Support Our Work



Shopping on For HR

Latest Resources