I am a survivor of extremely severe ritualistic childhood abuse and sadistic systematic torture. Without God's intervention in my life I wouldn't be here - NOW is the time for me to tell MY story by speaking the TRUTH about MY life. I will be silenced no more! On this blog I share MY life, MY healing journey; helpful quotes/stuff I come across and MY thoughts along the way. The more I speak out the more liberated I am from the shame and trauma of the abuse. My broken wings are gradually being restored. This blog has helped me begin to get my voice back and documents the journey God is taking me on to heal me from the trauma and damage caused by that most appalling abuse.

Tuesday, 19 July 2011

INFO ABOUT LIVING WITH CFS/ME


We all get tired. It's part of life, and especially part of modern life. Think for a moment about the last time you were really tired at work. It's harder to focus, harder to function, but you can push through it. 

Now think back to the last time you were really sick with something like strep or the flu, too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you're sick like that, it's like your body just shuts down and demands that you rest. 

There's a big difference between the two types of tired, right? That second kind of tired is what people with CFS/ME deal with every day. They're not just sleepy, and they can't just push through it. They're so wiped out that their bodies demand rest and sleep constantly. 

Most people who are regularly tired can trace it to some aspect of their lives, they don't get enough sleep, they're too busy, they're under too much pressure, etc. People with CFS/ME, however, don't have an obvious cause of fatigue. Usually, they were perfectly healthy people one day and no longer healthy the next. 

What many experts believe is going on in the body of someone with CFS/ME is constant immune system activation, as if the body is trying to fend off illness. Working that hard all the time is a big drain on the body, which is part of the reason we all get so tired when we're sick.

Common CFS/ME symptoms include:
  • Sleep that isn't refreshing
  • Muscle and joint aches
  • Headaches
  • Sore throat
  • Swollen lymph glands
  • Cognitive problems
The cognitive problems associated with CFS/ME are sometimes severe. Regardless of how intelligent the person is, he or she may become forgetful, be unable to recall common words, frequently lose a train of thought, or sometimes become confused. Simple tasks such as reading a newspaper, cooking a simple meal, or finding your car in a parking lot become daunting and overwhelming. 

Well-meaning people frequently tell those with CFS/ME that they'd feel better if they'd get more exercise. Most people do get an energy boost from exertion, but people with CFS/ME don't. They have a symptoms called post-exertional malaise, which means that even small amounts of exertion can make all of their symptoms worse for a couple of days.

People with CFS/ME are more than "just tired." They're suffering from an intense fatigue that doesn't go away. No matter how long they sleep, they don't wake up feeling refreshed. 

Many people with CFS/ME also have a lot of muscle pain and other flu-like symptoms, so, essentially, they feel as if they have the flu all of the time. Their immune systems also show signs that they're actively fighting an infection. 

CFS/ME is not a psychological condition. Research shows multiple physiological abnormalities in the nervous systems, immune systems and hormones of people with CFS/ME that are not shared by people who are depressed. 

Also, it should be noted that depression actually is a physical illness. The overlap in symptoms between depression and CFS/ME is likely due to common mechanisms involving brain chemistry, including abnormal levels of the neurotransmitters serotonin and dopamine. 

Many people with CFS/ME become depressed, but that's generally believed to be the result of living with a debilitating illness.

Imagine suddenly feeling sick and exhausted all the time and having someone tell you that you're not really sick. People with CFS/ME face that all the time. Some doctors say they're depressed or that it's all in their heads - they're just whiners or hypochondriacs. It's also common for them to tell someone, "I have CFS/ME," and hear something like, "I think I have that, too. It seems like I'm always tired." 

Because we don't yet have a good diagnostic test for CFS/ME, sometimes it's hard for people with the condition to convince the people around them they're really sick. It can strain marriages, drive friends apart, and make work conditions especially stressful. People with CFS/ME often end up feeling isolated, which compounds the depression that frequently goes along with any debilitating illness. 

Some people with CFS/ME find medications, supplements and life-style changes that help them feel better, but it's a long, difficult process of experimentation and not everyone finds things that make a big difference. So far, no drug is FDA approved for treating CFS/ME, and no treatment works for everyone. 

Chronic fatigue syndrome can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
  • It's NOT psychological "burn out" or depression.
  • It's NOT laziness.
  • It's NOT whining or malingering.
It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure. 

CFS/ME is a serious, life-altering, frustrating, often misunderstood illness. What people with CFS/ME need most of all from those around them is emotional support and understanding. 


What "We" Don't Want to Hear
Certain phrases really annoy a lot of us with chronic illnesses such as Fibromyalgia (FM) and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). While they're usually said with the best of intentions, we hear them so often and they reflect such a lack of true understanding that they're like fingernails on a chalk board. 

Here are some things to avoid saying to someone with FM, CFS/ME, or any other invisible illness: 

"You look great - you must be feeling better."
We're likely getting better about concealing how we feel, not feeling better. Or it might be a single good day after a month of horrible days. 

"Let's get you out of the house. It'll give you a boost!"
If we're staying home all the time, it's probably because we're not feeling well enough to get out. 

"Are you sure you're not just depressed?"
If only it were that simple! Yes, many of us are depressed, and even if we're not the symptoms can appear similar. However, depression alone can't explain the broad range of symptoms we experience (often several dozen of them at a time.) Plus, depression is a very real physical illness, so the phrase "just depressed" is inappropriate either way. 

"I've been really tired lately, too. I know how you feel."
If you're so tired that you feel on the verge of total physical, mental and emotional collapse, you might. Otherwise, statements like that make it seem like you're trivializing an illness that's much more than being tired. 

"If you'd (exercise more, lose weight, eat a better diet, get back to work) you'd feel better."
While exercise or dietary changes do help some people with these conditions, they also can make us much worse. We know our bodies best and need to research those changes for ourselves. Weight has never been shown to exacerbate symptoms of FM or CFS/ME, and the physical and mental stress of "getting back to work" is far more likely to make us crash than recover. 

"You should try this new supplement, vitamin, medication. You'll be cured!"
For many people with FM and/or CFS/ME it has taken them years to fine-tune their regimen of supplements and foods. Yes, I am sure many of them would benefit from massage, blood tests, medical care, organic food, acupuncture, and Chinese herbs, but most people can't afford them. As for "cures", there are no such thing. Anyone who tells you they have a cure is either trying to get your money, lying to you, or both! Beware of these people. 

"You just haven't found the right doctor."
Pain, trouble walking and working accompany this person every single day of their lives, and there is no end in sight. The probability of a cure is not an issue - the necessity of living with illness is the only acceptable option. Your acceptance of their reality impinges on the disabled person's acceptance of life with illness/disability.

"Oh I forgot my perfume, fabric softener, smoking makes you sick"

Many people with FM and CFS/ME are allergic to, or are sensitive to: fabric softeners, essential oils, perfumes, bleach, any and all pesticides. When you keep "forgetting," they get one of two messages:
1.       You don't believe they're really sick.
2.       You don't care. 

"At least you can still (hear, see, etc.)." Or, the classic: "You should count your blessings."
If you have not experienced the loss, don't assume it's easy to discount. When your whole life has been turned upside down and nothing will ever be the same, it's hard to think you're "blessed".


What "We" Do Want to Hear
Sometimes it's hard to know what to say to someone with an invisible illness, such as Fibromyalgia (FM) and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME/). 

Here are some things that someone with FM and CFS/ME would welcome hearing: 

"If you're not up to going out, we can just get together and (talk, play cards, watch a movie)."
This shows that you understand the limitations of our illness and it gives the person an alternative to cancelling plans. 

"Let's do our grocery (or Christmas) shopping together. I'll pick you up."
Shopping can be extremely tiring for us, and it can really help to have someone else there to help with things like loading and unloading the car, or trekking back across the store for a forgotten item on the other side. 

"How much are you up for today?"
This shows that you understand that our energy levels can vary from day to day and can help your companion feel comfortable expressing his/her limitations. 

"How are things going?"
This is better than asking "how do you feel." It opens the door to all aspects of life, instead of just physical well being. Most days, I don't feel that great, but my life might be going really well. 

Can I (pick you up, help with that, etc.)?"
This works better than something like, "Do you need me to..." because it shows a willingness on your part to help without implying the person is incapable or is a burden.




2 comments:

Eve said...

This is very informative. Thank you for posting it. I am praying for you.

Princess Fi said...

Yes I thought it was really well written, the entire website has loads of mega helpful info about CFS/ME