This blog entry is an aberration from my normal blog entries. Most of the time I write about what I am doing to try and recover however this blog is an attempt to describe what I am trying to recover from. I am also trying to convey how serious CFS can be as there is a misconception in the community about what Chronic Fatigue Syndrome actually is.
The term ‘Chronic Fatigue Syndrome’ is a misnomer. Although post exertional malaise is normally considered a necessary condition to have CFS, it is not a sufficient condition. Also fatigue is normally considered a necessary condition however is not a sufficient condition. From my point of view based on my extensive list of symptoms, my illness is essentially ‘chronic a+b+c+d…..+y+z syndrome’ (with each letter indicating a symptom.) Fatigue for me is just another arbitrary symptom.
Recently on the Dr Oz show in the USA, Dr Oz polled the audience, asking who was exhausted. Keep in mind, the audience were just normal, healthy people. 100% of the audience stated that they were exhausted. In the next poll, Dr Oz polled the same audience and asked who was ‘chronically exhausted.’ 30% of the audience put up their hands. I believe this is indicative of society’s perception of what Chronic Fatigue Syndrome is. This blog will attempt to show that run-of-the-mill ‘chronic exhaustion’ is NOT chronic fatigue syndrome. CFS is a serious debilitating disease and the general public don’t understand at all how serious it is.
These are some quotes indicating how serious CFS is.
“The people with Chronic Fatigue Syndrome are in fact profoundly ill. They are as disabled as anyone with AIDS, with breast cancer, with coronary artery disease.”
William Reeves from the CDC
“I split my clinical time between the two illnesses (CFS and HIV), and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
“ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)”
Canadian ME/CFS Consensus
“I have treated more than 2500 AIDS and CFS patients over
the past 12 years and my CFS patients are MORE sick and
MORE disabled, every single day, than my AIDS patients are,
except in the last two weeks of life!”
Dr. Marc Loveless
“Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.”
Hooper and Marshall
“CAN you imagine not sleeping for 48 hours, then running a marathon with a hangover and a dose of flu? That’s how it can feel to have ME.”
“My son has said that he would rather have a disease like cancer or diabetes that is not only treatable, but that people can understand….. I felt like a horrible mother for “wishing” that they would find “a nice simple brain tumor” when they did his MRI of the brain.”
“I have had CFS for 25 years and am an 18-year survivor of bilateral breast cancer. To date, the CFS has been far more devastating and disabling than the cancer. Recently, our 32 year-old daughter was diagnosed with early stage breast cancer. Certainly, it was a blow to her and our family to discover she had a cancer in her body which could kill her. But I kept thinking. It could have been worse. She could have been diagnosed with a full-blown case of life-altering CFS, which could have affected her for the rest of her life. That would have been a fate worse than death for our high-energy, adventuresome, life-loving, and hard-working daughter. I mention the above because CFS is considered a “lesser” illness than breast cancer. Breast cancer certainly can kill you and CFS does not normally lead to death. But based on my experience with the two illnesses, I would choose for my daughter to take her chances with breast cancer rather than have to endure CFS.”
Anonymous presentation to the CFSAC
”You talk to CFS patients and they say, ‘Thank God I have a deadly retrovirus’, thank you.”
Judy Mikovits referring to XMRV being a possible cause of CFS.
“Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication. In some cases Myalgic Encephalomyelitis is fatal.”
What does CFS feel like for me?
I have decided to describe what it feels like for me to have CFS. It is sometimes difficult to precisely articulate what certain pains feel like however I will attempt to outline what living with CFS feels like for me at the moment. Keep in mind that I have been diagnosed with severe CFS. Also that different CFS patients experience a varying range and degree of symptoms.
Cognitive impairment: It may seem difficult to imagine not being able to think however this is what I live with everyday. I estimate that my cognitive abilities fluctuate between 30% and 60% of what they should be. If someone asks me a question that requires me to think I may begin to process the question in my brain however the headache feeling of my brain being in a clamp and tightening occurs. Not only this feeling but also the feeling that my brain is compressing and being strangled all over occurs. It is therefore difficult for me to think. When I was well I would have found it difficult to understand the concept of cognitive impairment however I understand it all too well now.
Mornings: Every morning from waking up until around 1pm my cognitive abilities are even more severely affected. I am not able to watch television, use a computer, read anything at all or listen to anything. It is very hard to be in the same house as anybody else as my head feels really fuzzy and sensitive to all stimuli. If I do any of the above things listed, my head will experience the quasi-headache that feels like someone is squeezing my brain. The longer I continue the activity, the more tightly squeezed my brain feels.
Energy: It is very hard to convey what a lack of energy feels like. Prior to having CFS, the lowest energy that I had every experienced in my life would have been what I would consider now to be about 90 out of 100 on an energy scale (with 100 being full of energy.) The energy that I have every day in my life now is about 5 out of 100. The best analogy I can give is that it is like trying to drive your car without any petrol. It is like someone has strapped 100kgs to your arms, 100kgs to your legs and 100kgs to your body and paralysed you. Doing things that most people take for granted like standing up or walking to another room are to me like running a marathon.
Limits: The concept of having limits is something that is foreign to most well people. For me my limits include:
- Not being able to be out of my bed for more than an hour a day.
- Not being able to talk too much. It takes a lot of energy for me to talk and I can only say about 200 words in an entire day. This is equivalent to you reading about 2 paragraphs out loud and then not being able to speak for the rest of the day
- Not being able to walk very far. My limit is 100metres (or about 1 minute.) Some days my limit is less as I may go to my letterbox and back and then ‘crash.’
- I cannot tolerate much stimulus.
- My ability to cope with stress is impaired, so I purposely try as hard as possible to avoid conflict around the house.
- I am not able to think too much. For instance if I played a game of chess I would definitely ‘crash.’
- I’m unable to leave my house for long. If I have been driven away from my house and spend 30 minutes in the car before returning to my house, I will ‘crash.’
Crashing: This concept of crashing is difficult to convey to someone who hasn’t experienced it. As my CFS has progressed from mild to moderate to severe, the severity of my crashing has also increased proportionally. If I go outside just one of the limits mentioned above I will crash. For me at the moment crashing involves lying in bed for up to 2 weeks. I feel like I am a vegetable and am unable to role onto my back. I lie on my side and every few minutes spit mucus into a bin. I am unable to talk at all as my body has been draining of the little energy I had. The pain of crashing is like no pain I have ever experienced before. Prior to CFS I had only moaned in pain on 2 or 3 separate occasions when I was ill. When I crash I moan in pain for days on end and my body just feels like it’s begging for mercy. My cognitive abilities are also severely affected when I crash and if I was asked what 2+2 equals, I wouldn’t be able to tell you as my mind shuts down. This crashing lasts from several days to several weeks if I go outside just one of the limits mentioned above in the above ‘limits’ paragraph.
General pain: There is a degree of general all-over body pain that I am in on a daily basis. This feels like many of my muscles are being squeezed.
I also always feel like one does when they have tonsillitis. Not necessarily as much pain in the throat region however the general feeling that accompanies the tonsil pain. Unfortunately for me, the difference between me and a normal person having this feeling is that theirs lasts a matter of days however mine has lasted for years.
In bed: I spend 23 hours a day lying in bed and the other hour normally sitting having breakfast and slouched in a chair next to my bed.
Social life: It is impossible for me to maintain a social life with CFS as I am unable to talk, interact or be in the same room as people for extended periods of time. All attempts to even have an extremely modified social life have led to me crashing.
Headache: I have a headache that hasn’t left me for 4 years. Its severity fluctuates however it is always present. The headache is of a severity that I had never experienced prior to the CFS. The best way I can describe it is imagine if someone has fastened a clamp to your brain and was tightening it.
Sore throat: I always have a sore throat. The sore throat makes it hard for me to talk and I always have to strain my voice to talk.
Blood flow: I had a SPECT scan of my brain and the blood flow to my brain is severely impaired. Also the blood flow to my peripheral points (hands and feet) is severely impaired. If I were to touch one of your arms with my hand and the other arm with an ice cube, you would be unable to tell which is which based on temperature. Living with this significantly impaired blood flow to my brain impairs my cognitive abilities. Also it isn’t very pleasant to have hands and feet the temperature of ice. If I touch someone’s arm, they complain that it doesn’t feel very nice to feel something that cold. That cold thing is me, so imagine how it feels for me!
Urine and mucus: These are some of the little annoyances that I experience on a daily basis. I must urinate so often that I now have a urine bucket in my room to save me from walking to the toilet. I also cough up mucus so often that it equates to about once a minute for every waking hour.
Trapped: Essentially I am so severely disabled that I am trapped in my room at home which feels just like being in jail. Not only in jail but in a high degree of pain all of the time.
This is just a snapshot of what it feels like for me to have CFS. There are many more symptoms that I experience on a daily basis and these can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/08/25/a-list-of-my-current-cfs-symptoms/
I have tried to portray what it feels like to ‘be in my shoes’ however it is one thing to describe and another to actually experience all of this pain. I hope this blog has shown how debilitating and serious CFS can be/is.