First up in my CFS Symptoms Series is the incapacitating fatigue PWCs (people with CFS) experience. Although this is only one of many symptoms we experience, this one has to be the worst.
The causes of Chronic Fatigue Syndrome are still unknown, but studies have shown that multiple nutrient deficiencies, food intolerance, or extreme physical or mental stress may trigger CFS. Studies have also indicated that Chronic Fatigue Syndrome may be activated by the immune system, various abnormalities of the hypothalamic-pituitary axes, or by the reactivation of certain infectious agents in the body.
To try and explain the type of fatigue PWCs experience is very difficult. It is not your normal tired. “Incapacitating fatigue is experienced as profound exhaustion and extremely poor stamina. I had written an online article one time where I tried to explain the fatigue experienced with CFS. I used what I call my “Balloon Analogy”:
Imagine a balloon full of helium floating in the air. Now take the balloon, untie the knot and leave all of the air out. What happens? It will fall to the floor. Pick up the balloon and try throwing it back up into the air to float. What happens? It falls to the ground. No matter how many times you throw the balloon up, it’s going to fall back down. You can’t force something that is not there. It’s the same with Chronic Fatigue Syndrome. CFS is more than just the normal tired. There are days when I am just like the balloon analogy I used. There is absolutely no energy available to do anything, even get out of bed.
People severely ill with chronic fatigue syndrome have a functional level that is significantly lower than that of someone with cancer undergoing chemotherapy, someone with heart disease or multiple sclerosis. So obviously we are a lot sicker than the name “Chronic Fatigue Syndrome” implies.
It is normal to be tired when you work, are raising a family, and just in today’s stressful world in general. When I was still able to work, I worked many hours a week (more than full-time), but I always felt good at the end of the day even though I was tired. I had accomplished a lot during the day and it was a purposeful tired. After a long hard day, most people go to bed, sleep, get up and start all over again refreshed and ready to go. Ever since I developed CFS, I have always had this feeling of defeat because I wake up in the morning feeling the same as when I went to bed – and I hadn’t done anything yet. It is as though there is this never-ending exhaustion that refuses to leave – day after day, week after week, and year after year.
The fatigue with CFS is truly disabling. We often hear people say, “I am so tired/fatigued, I can’t move another step”. For someone with CFS, this is not an exaggeration. This is our life. Physically, when a CFS flare hits, there is no energy reserve. Taking a shower may be all it takes to put a PWC in bed for the day – or even the week. I have had times where I have had to physically crawl to the bathroom because I could not walk. There is no “forcing” it with CFS.
Another very frustrating aspect with the disabling fatigue is that a PWC desperately wants and needs to sleep. The body is so weak that it begs for sleep, yet because of the completely sick and miserable grip CFS has over the PWC’s body, sleep will not come, or it will only come in short waves.
Chronic Fatigue Syndrome disrupts work and family life for hundreds of thousands of people. Because of the sheer devastation of this disabling fatigue, many of us have been forced to give up our jobs and go on disability because we are no longer reliable, no matter how hard we try to be. There are many more PWCs fighting to receive disability either through the government or work due to the stigma that surrounds CFS.
The emotional affects of CFS are almost as devastating as the physical ones. Most PWCs (myself included) I have talked to were high achievers, “type A” personalities who loved life, loved working and who wrapped their identity around what they achieved. Once CFS took over their lives, they no longer felt good about themselves or knew who they were. Everything they did in life revolved around physical and mental stimulation. Now that they can’t do anything at all, or very little, it is as though life no longer had any meaning. I know I often said to family members and friends, “Who am I if I can’t work?” Even though I was a wife and a mother, I still had that intense need to work – I still do. For those with CFS who were the sole supporters of their family, the loss was even greater. Depression is common among CFS patients, but is not the cause of the illness. The depression with CFS is because we are sick, we are not sick because we are depressed.
Socially CFS has left many PWCs isolated from their family and friends. It’s sad to say, but you do find out who your real friends are when you become ill with this disease. It is very hard for people to understand how someone can feel sick day after day, week after week. Most people when they become ill get better. We don’t.
Because the fatigue is so unpredictable with CFS, it is hard to make advance plans. Many times when we do, we have to cancel so many PWCs avoid any type of social events completely. We can get up feeling okay but by lunch or dinner time a PWC can be bedridden. After canceling so many times, friends and family members take it personally and invitations usually cease. Many times people will look at us as “flakes” because they think we are just trying to get out of doing what we promised when in reality, we just physically can’t. I rarely volunteer for anything anymore for this reason. I don’t want to promise something I physically might not be able to deliver.
Isolation among PWCs also occurs because other people close to us just don’t get how traumatic the fatigue is for us. Loved ones will say things like:
– Suck it up
– You need to get out of the house
– Get a hobby
– You’re just depressed
– I’m tired, too but you don’t see me lying around the house
– and many more rude comments
We are often accused of being attention seekers, lazy, and bored and people tire quickly of being around someone who is sick all of the time.
So after reading this article, I hope I have shed some light on how severe the fatigue is in CFS. If you had doubts before about the validity of this illness, I hoped I took those away.
I would like to hear how others with CFS describe their incapacitating fatigue. Please comment!
Tomorrow I will discuss the next major symptom of CFS – unrefreshing sleep.