What makes CFS such a hard-edged illness?

[guest]

Please add your thoughts.

 

[Elliot]

I can't agree that CFS is much more unbearable than other illnesses. It is a horrible illness to have, but there are plenty of other illnesses that wreak havoc and destroy lives. It seems rather petty (not calling you petty- using it as a generalisation) to 'compare' illnesses. Each illness is horrible in their own way. Just my thoughts though

 

[eric_s]

After the first year of CFS people still have a lot of hope remaining. There probably are lots of treatment options left and many physicians who one could visit. After 5 years of CFS some hope fades away. After 10 years hope becomes very small. I see XMRV and I see the chance that this could be it but I truly suffer when reading that those on antivirals improve in the beginning but then seem to stop with no improvement at all. Time will tell us if this is just a phase but one thing is sure, it will take a long time till we receive specific and efficient treatment.

That's why i feel that if XMRV is not it (and i guess we should know by the end of this year the very, very latest) we need to really do something. Like i said in a post yesterday, now that i have smelled some fresh air, i am never willing to go back to as it was before.

We are so many and this is serious. As soon as people really realize this, things will have to move. And just imagine what sort of muscle we have if we were really organized and everyone contributes in the quantity that is possible to that person. We will have the budget of some small countries probably :tear:

We don't demand anything unusual, actually the situation as it has been up to now is unusual. When i was younger, i was convinced that nowadays the situation that you are ill and doctors can't help you doesn't exist anymore. I thought it's just something your parents tell you about. We are citizens of our countries, the most developped and rich countries in the world, and all we demand is that they make us well again, which at least in Europe is one of the missions a government has. They can't have such a percentage of the population live like this, suffer like dogs.
We will have to raise hell but in a good way, we are not looking for trouble, not at all. They should not see us like that.

 

[eric_s]

I can't agree that CFS is much more unbearable than other illnesses. It is a horrible illness to have, but there are plenty of other illnesses that wreak havoc and destroy lives. It seems rather petty (not calling you petty- using it as a generalisation) to 'compare' illnesses. Each illness is horrible in their own way. Just my thoughts though

Yes, but this affects a lot of people. And people of all ages. And even if this might sound cynical, we don't die. So we have to be cared for for a long time. That's why it's really in everyone's interest (at least in the interest of the majority of the population) to end this.

 

[Esther12]

Tricky subject to write about.

It can seem like petty wallowing in our own self-pity - but I also think it is interesting to examine the peculiarities of CFS which make it especially difficult to deal with.

The uncertainty is a big one, along with the quackery it leads to.

People presuming you're mentally disturbed, when there seems to be little evidence to support this view.

The possibility that you are mentally disturbed, and blinding yourself to the reams of evidence in order to protect your ego(!).

The claim that GET will let you fully recover if only you did it right, combined with numerous personal experiences showing that this is not the case (what if I should just give it one more try?)

I don't know. Currently, I'm quite enjoying my days - and the primary hardship is the knowledge that this is it, and I won't have another chance to live my life and contribute more fully or take advantage of all the opportunities that are open to us.

Compare yourself to a serf from the middle ages - it's the key to happiness!

 

[tymewarp#9]

I'm sure there are other illnesses which elicit responses of disgust, disbelief, etc. from ones family/friends & doctors, but I'll bet ME/CFS tops the list. Even mental illness -also 'invisible' in many cases- now gets more respect (after hard battles fought by activists).

Couple that abuse with the fact that the disease(s) by it's very nature makes it difficult for us to help ourselves, and the result is one singularly devastating situation. I've little doubt that many suicides are a result of undiagnosed ME/CFS, due simply to the sheer humiliation (especially by victims who have no idea what's wrong with them, and blame themselves for their weakness, as they are told to).

It's a triple-whammy: physical pain / weakness, cognitive troubles, and no legitimization nor empathy from friends, family, or physicians. What other illness has all those fun features?:worried: (and my Doc tries to cheer me up by saying, '..well hey, at least it won't kill you!'; he has NO CLUE).

 

[paddygirl]

Role reversal

Many of you will appreciate this.

My younger brother, who is a big strapping carpenter aged 47, developed a hereditary heart condition.

On meds for ages but very exhausted all the time. Went to ER with chest pain, told it was indigestion. After three docs saw him one decided to investigate. Three blocked arteries and had had a recent heart attack. While waiting for a triple bypass, his heart stopped and he was revived. He survived the three hour drive in an ambulance to the hospital for the bypass surgery and was prepared for the operation.

The surgeon in his wisdom decided to tell him that he had a 50/50 chance of survival. Many tears and frantic will writing. He survived and is now out of intensive care just today. We are not the only ones neglected.

I decided to gather stories and letters from other survivors of the op, to show him there was life after.

A neighbour who had the operation done years previously told me the oddest story. She too had been going to the doctor with chronic fatigue for a couple of years. The doctor said to her 'count yourself lucky you don't have that awful ME thing, those people can't even get out of bed!'

I'm speechless. (Although maybe I should find that doctor if he really really thinks that)

Paddy

 

[ixchelkali]

I think one thing that makes ME/CFS particularly hard to handle is the post-exertional malaise. When you try to overcome this disease by fighting against it, soldiering on, it rises up to bite you in the butt, big time. That means that to learn to live with ME/CFS you must go counter to many of our western values. So at the same time we're coping with demolished lives, illness, and cognitive difficulties, we have to reframe our belief systems about self-worth.

There are all those books, movies, magazine articles about people who bravely battle to overcome disease. The common theme is that the patient/victim/hero carries on in spite of the handicapping illness and overcomes obstacles to get on with life. Other people admire them; "He's such an inspiration to us all," etc. Of course, that's how I want to be, and how I want to be seen. But living with ME/CFS requires just the opposite behavior. We have to learn NOT to fight against the disease, but to work with it, NOT to ignore the limitations, but to live within the boundries of the disease.

So we either have to see ourselves as not being heroic and brave in our struggles, or we have to redefine what it means to be heroic and brave. And instead of getting support and admiration from others for our efforts, we get reviled (accused of being lazy, malingering, or at best, neurotic).

We have the fatigue of undergoing chemotherapy, the constant pain of an autoimmune disease, the kaleidescope of symtoms of AIDS, and the cognitive difficulties of early Alzheimers. We have to deal with it without respect, social support, and sympathy from society. And according to the values systems that most of us were raised with, we don't even get to see ourselves as heroic in our struggles, because in order to survive we have to "go with it" rather than push past it.

There are many more devastating diseases, some truly hideous. I sometimes watch those medical programs like Mystery Diagnosis, just to remember that there are people coping with worse illnesses than this. However, few illnesses hit both the body and the brain so hard without evoking sympathy and support. And few require you to master a whole new paradigm of living in order to cope with them. I think that added burden makes ME/CFS especially had to live with.

 

[guest]

I think one thing that makes ME/CFS particularly hard to handle is the post-exertional malaise. When you try to overcome this disease by fighting against it, soldiering on, it rises up to bite you in the butt, big time. That means that to learn to live with ME/CFS you must go counter to many of our western values. So at the same time we're coping with demolished lives, illness, and cognitive difficulties, we have to reframe our belief systems about self-worth.

There are all those books, movies, magazine articles about people who bravely battle to overcome disease. The common theme is that the patient/victim/hero carries on in spite of the handicapping illness and overcomes obstacles to get on with life. Other people admire them; "He's such an inspiration to us all," etc. Of course, that's how I want to be, and how I want to be seen. But living with ME/CFS requires just the opposite behavior. We have to learn NOT to fight against the disease, but to work with it, NOT to ignore the limitations, but to live within the boundries of the disease.

So we either have to see ourselves as not being heroic and brave in our struggles, or we have to redefine what it means to be heroic and brave. And instead of getting support and admiration from others for our efforts, we get reviled (accused of being lazy, malingering, or at best, neurotic).

We have the fatigue of undergoing chemotherapy, the constant pain of an autoimmune disease, the kaleidescope of symtoms of AIDS, and the cognitive difficulties of early Alzheimers. We have to deal with it without respect, social support, and sympathy from society. And according to the values systems that most of us were raised with, we don't even get to see ourselves as heroic in our struggles, because in order to survive we have to "go with it" rather than push past it.

There are many more devastating diseases, some truly hideous. I sometimes watch those medical programs like Mystery Diagnosis, just to remember that there are people coping with worse illnesses than this. However, few illnesses hit both the body and the brain so hard without evoking sympathy and support. And few require you to master a whole new paradigm of living in order to cope with them. I think that added burden makes ME/CFS especially had to live with.

This is the best abstract I ever read about this topic, thank you so much, ixchelkali. It is true in every word!
I want to fight, but I can't because everytime I do I get kicked into my butt. So I try to live with this illness but I can't either. It just wears you down.

 

[lucy]

I agree with ixchelkali completely, the hardest thing is that you cannot fight it - nor physically, nor mentally. It is like having to love a person who has hurt you so you would never be able to forgive.

 

[taniaaust1]

I think one of the reasons why this is far worst then other illnesses (other than what everyone else has already said.. good posts, the most major things have been already said) ... is the amount of things we have going wrong with us with it. We are like having all the illnesses 10-15 different patients may have, rolled into the one body, leaving no part of us unaffected. Not many illnesses attack every part of the body and leave one not knowing day by day what is going to be affected tomorrow. The harder we try.. the more we are kicked backwards in a battle no one else can see.

I once heard a cancer survivor (i think it was a leukemia survivor) say that having cancer was far less of a struggle then the one she has with CFS/ME, with cancer, the world tries to support you, with CFS/ME the world is against you.

 

[*GG*]

This is the best abstract I ever read about this topic, thank you so much, ixchelkali. It is true in every word!
I want to fight, but I can't because everytime I do I get kicked into my butt. So I try to live with this illness but I can't either. It just wears you down.

Ditto!:sofa:

 

[Tammie]

my Doc tries to cheer me up by saying, '..well hey, at least it won't kill you!'; he has NO CLUE).

no, in most cases, it won't kill you; it just takes your life

 

[Victoria]

For me this whole issue of chronic illness (which other members have described so well), is that it's like the film Groundhog Day.

Now matter how much I improve (& there are many improvemnts since I stopped work 6 months ago), every single morning I wake up stiff, in pain & dread the routine of getting out of bed. I can walk (slowly) for hours most afternoons & feel fantastic when I get home, but the next day I wake up stiff & in pain again.

(I AM very thankful for the good afternoons & evenings I have though).

 

[Sallysblooms]

CFS is hard and now with POTS, it is magnified. I do think I would much rather have these things that what I had before.

There are so many illnesses that are horrble. I pray for all sick people every night.

 

[heapsreal]

lol victoria, i use that ground hog day saying alot. It is kind of scary watching that movie when u apply it to your own life. We're sort of going no where.
I also use a saying that, i have the stamina of a thousand dead gazels. I think it gets the point accross, lol

cheers!!!!

 

[ahimsa]

It is true that playing "oppression olympics" (e.g., which is the worse illness?) will get us nowhere. But understanding the unique issues surrounding ME/CFS might help new folks learn how to cope with it.

There is no denying that there is still a stigma associated with ME/CFS. Many folks still think it's just getting a bit tired now and then, don't know all the symptoms, and don't realize that although it is not usually fatal it is a serious illness with no easy answers. So, if someone new to ME/CFS is reading this thread, and gets something from it, learns to reject the message that they should just tough it out and try harder, stops feeling guilty for having to rest, stops feeling like they are crazy for having all these weird symptoms, etc., then this message will have served its purpose.

I completely agree with the comment that it is hard to live with an illness where most of the traditional ways of "fighting" against it only makes it worse.

I was so used to pushing myself, mentally and physically, for the first 29 years of my life. Want to learn something? Study hard. Want to build muscles? Lift heavier weights. Want to improve cardio ability? Run or hike farther, faster. Want to climb Mt. Hood? Push yourself until you have built up the endurance. (I climbed Mt. Hood twice, south side, the easy way up from a technical climbing point of view, but it still requires some serious stamina)

Then suddenly, after this illness hit me, pushing myself made me worse. It took me YEARS to figure this out. I also had to figure out that certain types of activity (standing, getting overheated) were 10 times worse than others due to my problems with orthostatic intolerance.

So, I learned all kinds of mind games to trick myself into resting. Yes, it makes me feel lazy and guilty when I'm sitting in a chair with my feet up, resting. But if I tell myself that I'm charging my batteries (e.g., see my signature below) then I can force myself to rest. If I remind myself that I can actually do more in the long run if I pace myself with resting, and avoid a crash, then I can do it without feeling guilty. And I'm very lucky to have a supportive husband who helps me cope with this illness and never makes me feel guilty or lazy. I'm so fortunate that we had been married 5 years, and had been together a couple years before that, before I got ill. He saw me as a healthy person. He knows that the enthusiasm and desire to do stuff is still there, just trapped inside a body that is broken.

Okay, enough rambling - I hope that was helpful to someone out there!

 

[Cloud]

It took many years to realize that my old ways of overcoming this kind of challenge were only making me worse....kinda like trying to stay afloat in quicksand...the harder I fought, the faster I sank. My instinct to fight for survival was destroying me. Many hundreds of times I was knocked down, only to get right back up thinking I would make it work this time...just to be knocked back down again and again (we must be the strongest willed people on the planet). Even after learning that I was my own worst enemy when it came to fighting this disease, I still couldn't just change my nature of fighting harder to overcome the problem. After many years, and progressing into severe illness, I finally learned that if I were to survive, I needed to go against my instincts for survival and re-write the script. That has been extremely difficult, because I had to change my nature....my personality, to survive. But I have made progress, and who I really am at my core remains intact. Beat up a bit maybe....but intact.

Even though I'm not comfortable with the idea, I do understand the logic of comparing levels of disability between different diseases in order to clarify what makes ME/CFS so disabling. For example, the paraplegic who can enter wheel chair races, or the quad who still has the ability to choose their perspective on life, or even become a physicist. Severe ME/CFS preludes both of those possibilities. ME/CFS is indeed devastating in many ways physically and mentally that limits most definitions of having a life. I personally feel it should be high in the running of the most debilitating diseases because it affects body, mind, and soul and leaves one like a living dead person. Kinda like being in hell 24/7 for eternity.

There is a reason for the high rate of suicide with ME/CFS....the disease is horribly debilitating and leaves one stripped of familiar coping skills. I think the ultimate loss is of ones Chi.....the Life-force....that core place where hope resides. A loss of Chi leaves one unable to cope with any other disabilities or to find meaning utilizing whatever faculties may be left intact. We have to above all else hang onto hope. I have had lots of joy in my life, but also some very extreme challenges that had left me temporarily devastated both physically, mentally, and stripped of having any power to change the circumstances...but nothing compares to the challenge of ME/CFS. I knew a man who had survived the Bataan death march by helping others hang onto hope. Victor Frankl had much to say in this regard as well. I like what ahemsa said about new people not understanding many things about this disease and how right information can be helpful for them. I was stuck in the push-crash cycle for 10 years because no one told me about the damage I was doing to myself. There is much we can share with new people that may very well spare them some of what we have been through. And being helpful in that way gives my life meaning and hope, even in the midst of a nightmare.

Sorry for getting so philosophical on ya guys...but hey, that's me.

Hugsss everyone

 

[BEG]

I think Cloud says it very well: "ME/CFS is indeed devastating in many ways physically and mentally that limits most definitions of having a life." That is the hard-edge to ME/CFS.

This disease takes the life out of you and life away from you. "German philosopher Friedrich Nietzsche wrote, "He who has a why to live can bear with almost any how. I try to stay focused on the why.

 

[Carrigon]

For me, being in my almost twentieth year of having this disease, I have yet to find another illness as disabling and devastating as severe CFIDS/ME. I've met many people over the years with all kinds of disabilities, not one of them is as bad as having severe CFIDS/ME. I've met people in wheelchairs who lead full lives. I've met mentally ill people with full lives. I've met blind and deaf people with full lives. They all travel, get married, have a life. I am the most disabled person in the disabled/elderly apartment building I live in. Everyone else goes out every day. They do a million things, go to classes, social functions. Everything I can't do. Some of them work part time, too. Alot of them like to go on long walks. Basically, not much stops them from having a life. But CFIDS/ME has stopped me for just about twenty years.

Every day with this disease is a new hell. I never know what organ system will be hit on what day or for how long. Will it be cognitive symptoms hitting my brain today? Stomach problems? Allergies? Autoimmune, attacking my spleen or thyroid again? POTS flare? Maybe I won't be able to stand up today? Central nervous system attack with inflamed nerves? Another yeast infection? The fevers, the chills? Oh, the list goes on and on.

The level of fatigue is beyond devastating. It's something you have to experience to believe. Every little task of the day is huge and monumental. Small things that people take for granted every day are so incredibly hard for me to do. I have to rest up between doing anything and then rest again.

This disease is like no other. This isn't something where you can just ignore the symptoms and push on. Try it and it beats you so badly, you might be down for months. This isn't like a broken bone where you can just take a pain pill and still sit at your desk at work. This isn't like being deaf, where you are just missing one sense, but can still compensate and have a life. There is no life with severe CFIDS/ME. It won't let you have one.

I can never make plans because I never know how I'll be. And anytime I do anything normal, I pay for it in spades. And the pain and suffering is never worth it.

Yeah, there are other things people have in life, but this disease destroys your whole world. It takes everything away from you, friends, family, work, school, social activities, religious activities, money since you end up poor cause you can't work anymore, you might lose your home, too. Basically, anything that makes life worth living, this disease takes away. The freedom to choose what you want to do with your life or even what you want to eat or do in a day. Everything is taken away.

So really, in my mind, I haven't found another disease that does all this and still forces you to live while you watch your entire life pass you by and everyone you ever knew goes on with their lives while yours is at a stand still for decades.