FatigueFree - My way out of Chronic Fatigue

The illness

On this page I write about the effects the illness had on me, from different aspects. Just a friendly warning: If you are ill with any of these conditions now, I recommend you not to read too much on this page. I know how stressed and discouraged I used to get when reading or hearing about other people's stories of illness, and that is definitely not of help in that situation.

Health
From the late summer of 2010 until the summer of 2013, I was practically house bound due to the fatigue and the associated worry and anxiety. It was very rarely that I managed to leave home: not even once a month, and just a few times per six-month period. I had to wait for an exceptionally good day to be able to, and be very careful to get enough rest both the days before and the days after to not risk crashing. Just going to my doctor's appointments was extremely tough, and the strain of it often made me lie flat out in the sofa for days afterwards.

I had a constant extreme fatigue, that wasn't relieved by either exercise or resting. I was tired when I woke up, tired all day, tired in the evening. I went to bed at 8:00 PM every night, I just didn't have the energy to be up any longer, but I still was very tired when I woke in the morning, often more tired than when I went to bed. I slept very poorly, woke up a number of times every night, and often had trouble going back to sleep.

I had a very hard time concentrating, it was difficult to take in new information, and I forgot lots of things. For example, it was hard paying the bills, I had to strain myself to focus on typing the correct digits on the computer, and sometimes I still got it wrong. I used to love baking, but now I had enormous difficulties reading a simple recipe for muffins. "Did I put the sugar in? And the baking powder?" I couldn't sit at the computer for more than 15-30 minutes at a time. And my husband often had to remind me of the small things in every day life.

I was so sensitive to stress that I could only watch the children's shows on tv, watching an action film made me stressed out for several hours afterwards. I was very sensitive to loud noises, every time the phone rang it startled me. If a phone salesman called that I had to reject, my stress response skyrocketed and I was shaking with adrenaline for a good while afterwards.

I had to be extremely careful with my level of activity, it was so easy to do a bit too much when I had a reasonably good day, and then I crashed with extreme fatigue for several days, sometimes up to a week afterwards. And I never knew that I had crossed the line before it was too late. When I had overdrawn my "energy account", I often got fever, migraine, flu-like symptoms or symtoms of a stomach virus, even though nobody else in my family got sick. It was like a very delicate tighrope walk, and I had to economize my energy level all the time.

I was very sensitive to infections, and I caught every virus that the kids brought home from school, which made me more or less knocked out every time. I had almost constant colds during the winter season, I only felt reasonably virus-free a week here and there. After a flu I was extremely fatigued for weeks afterwards. The infections seemed to hit me harder than the rest of my family, and they stayed with me longer. I also had heart palpitations and discomforts from my heart, which really terrified me. A number of times during these last years, I have been certain that I was done for, that this was my last moment on this earth.

My physical condition and strength deteriorated quickly of course when I couldn't leave my home. Several times I tried to carefully build up some stamina with short, slow walks and similar, but after a few days I always crashed and I was knocked out in the sofa for days. It was like my body simply couldn't handle any physical exercise, just a tiny amount was too much and made me crash. I couldn't walk much in the stairs of my house, one or two times a day was my maximum. I had to ask my husband or the kids to get me the things I wanted when I didn't have the energy to walk myself.

The last six months I didn't even dare to go out in the yard, or getting the mail by the mailbox about 30 metres from the house. The only thing I could do outside was to sit on the porch, watching the kids play in the yard. I even considered getting a wheelchair, to at least be able to leave home once in a while, with the help of my husband.

Relationships
I could rarely tag along for visits to relatives and friends, my husband had to go there with the children while I stayed at home. I dreaded the children's birthdays, having to look for presents (thank God for the internet), and inviting the relatives for a birthday party. I avoided any contact with people outside of my family as much as I could, since it was so energy draining. When the kids played wildly I got stressed out and very tired, not to mention how I felt when they were fighting.

My husband had to do all of the household work, cleaning, cooking, the laundry etc. And he had to take all of the responsibility of getting the children to school, going to PTA-meetings and so on. I rarely had the energy to help the kids with their homework, or even read books to them. I remember getting so short of breath reading to my youngest child that I hardly dared to try again. I was feeling constantly guilty for not being able to do anything, my husband had to do practically everything with the home and the kids.

I could never plan anything, never promise anything - not even fun things, since I never knew how I would feel on that day and time. It was a bit like russian roulette. And if there was something that I just had to do, like a doctor's appointment, I almost always felt really bad that day, because of all the stress it involved.

Economy/work
I had to discontinue my business completely, and all the work I had done with getting clients and building my reputation was lost. My economy had a setback of course, with the illness. My health care center also had problems with keeping their doctors, so I had a new doctor at almost every appointment. And every new doctor had his own theory of what was wrong with me, and what should be done about it.

After a while I was kicked out of the Swedish health insurance (you only get a limited number of "illness-payment" days), and I had to go the Unemployment office for a "Work-life introduction". But firstly I had a very hard time going to the appointments, and when I finally got there I was just sitting there crying most of the time. After the mandatory three months outside of the health insurance I applied for re-entry, which was also recommended by the Unemployment officer.

But even though the previous officer at the health insurance had promised me that I would be welcome back after the mandatory three months outside it, I was left hanging without any payments at all for 8 or 9 months. This was due to a new officer at the health insurance who refused to accept my medical, but failed to tell me what was going on. Eventually the situation got resolved with a new medical from a new doctor, and I got the money in the end. But all of that mess certainly didn't make my condition any better.

Well-being (or rather lack of well-being)
I had an almost constant anxiety and worry, my thoughts were racing back and forth all the time. Even though I would sit completely still in my sofa and might have looked relaxed, my brain was like a racing horse on steroids, running around at rocket speed. Lots of worried thoughts about myself, my health, the kids, my husband, the economy, the future etc, etc. It was impossible to stop all the thinking.

I constantly looked for answers, both in books and on the internet: What was wrong with me? And what could I do about it? Eventually I understood that I had CFS, but that didn't make me feel any better. Reading that it was chronic, and that there was no cure made me terrified. Would I be like this for the rest of my life? And maybe even get worse with time? I could live with not being able to work, but the kids! What kind of mother could I be for them? I had enormous guilt from being so useless, both as a mother, a wife, a daughter and a sister. I felt like everybody had to tip-toe around me, especially my husband, since I wasn't able to do anything.