What makes CFS such a hard-edged illness?

[Mya Symons]

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

Sorry, I am going to compare illnesses because I think it is the best way to make the point I want to make. I have two different illnesses that cause pain. Actually, I have three, but CFS and FMS are lumped together. I also have an agressive form of supposedly heriditary early osteoarthritis. It is not that CFS is more unbearable physically, but it may be more unbearable psychologically because of the prejudice that comes with CFS. For example, before I was diagnosed with the osteoarthritis I was speaking to my father who told me, "At least you don't have rheumatoid arthritis like your Aunt Mary. She had to quit being a teacher because the pain was unbearable." I did not bother to explain to him how insensitive that statement was. When he found out I was diagnosed with the osteoarthritis all of the sudden he is calling me to ask how I am doing. It is a horrible thing to have a disabling disease. It is even more horrible when the majority of the world thinks it is your fault or they don't believe you or they think your lazy or they think you are "crazy", etc. etc. with the hurtful things people think about people with CFS.

These are the things that I think make CFS a hard eddged illness:
1-First, and foremost, prejudice (what I mentioned above);
2-I used to be a smart person and a straight A student, but now I can't remember how to spell my middle name;
3-The Fatigue and the Pain of course;
4-The belief that people, including scientists and doctors, will continue to not believe we are really sick; and, thus, better treatments will never be found or used;
5-Dreams and goals being taken away, and;
6-The loss of a "social life"

 

[Angela Kennedy]

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.

And then, you get blamed for it. None of it's real, you are a malingerer/hypochondriac/wimp who can't handle stress/disordered personality... You become shunned, criticised, neglected by doctors, family, community because of the way your illness and your character as a sufferer is portrayed.

But hey, mustn't grumble, eh?

 

[heapsreal]

If i was going to fake an illness it would be cfs, because most people dont believe in it anyway and its a 'big' struggle to get any sort of sickness benefits. Theres better illnesses to 'fake' if u were to gain something from it. Also dont like it when people say they work hard and they dont get chronic fatigue, they just dont get it, u dont have to work hard to get cancer either. I think the name of this illness minimise the severity of this illness.
But we just have to battle on.

 

[Wonko]

ME is at least in my case, and from what I've read of a lot of others experiences, far from the most disabling illness around

my father had serious heart disease for 30 years, several bypasses etc - he couldnt work, he couldnt walk more than a few hundred yards, he lost the ability to drive due to passing out at random intervals etc - am I more disabled than him - yes - by a long way

my mother had progressive MS, was in a chair for several years, was for several years in unremitting severe pain (neuralgia that idiot doctors tried to treat with morphine), couldnt even sit up or feed herself etc. she couldnt even talk most of the time - for the last couple of years she looked like a concentration camp victim - and to make matters worse - she was fully aware of her condition - am I more disabled than her - not even in the same ballpark

I've had neuraglia for several months - still get it occasionally - but I'm functional enough to treat it now I know how to - I'm functional enough to communicate that it's a problem - I have significant amounts of both general and specific pain most of the time - but, and this is the important distiction, my memory is impaired so I'm not concious of it as being unremitting, as I cant always remember it there is no sense of hopeless suffering - not a good description but I'm sure the odd one of you will understand what I'm saying

I can at least most of the time look after my basic needs - granted the non essentials that most people call "life" arent possible most of the time - but this isnt even close to what my mother went through - frustration at not being able to do things because the price is too high isnt the same as not being able to look after basic needs AND being in constant severe unremmitting pain

now obviously this doesnt apply to ALL pwME - but it does apply to a lot of us - for most of us there ARE people out there who are worse off who dont have ME

 

[Megan]

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.

I can't compare it to other serious illnesses, because I haven't had them, but I have a moderate case of this illness and can compare it to being healthy and it is extremely debilitating. I like what ixchelkali said on this, the worst symptom is PEM. This stops me doing things even when I 'feel well', which is only ever transient. PEM keeps me in jail. Of course once the symptoms play up then they stop me doing things. But PEM means I constantly live in fear of a relapse from doing even the most ordinary activities. I think it should be called 'post activity malaise', not 'post exertional malaise' as most ordinary people wouldn't even recognise the activity that can cause a relapse as being 'exertion'.

Aside from 'exertion' in the normal sense of the word, anything that get me stressed, too excited (even good things!) or too much of anything will result in overwhelming exhaustion or to flu like symptoms that take days to pass. These 'activities' include the following which have to be almost completely eliminated or severley curtailed:
- work
- relationships
- exercise
- trouble doing shopping, cooking, housework
- social activity
- travel (particularly with healthy people)
- alcohol consumption
- even have to limit my coffee/tea intake
- hard to do/enjoy evening activities(parties, concerts, shows etc)
- can no longer go to the sauna, which I used to love!
- hard to enjoy music the way I used to
- the list goes on..

But people tell me to focus on what I can do. I really think this is good advice, but given the above list it is pretty bloody hard to take. But I know I am not as bad as some others with CFS who are, for example bedridden. I am thankful for one thing and that is that I have never lost my ability to read, and I enjoy reading so that is a blessing. Though in the worst relapses even reading too hard. Then I lie with my eyes closed and listed to radio podcasts (thank god for the internet on this one).

In short I live my life under a constant 'limbo bar', and if I dare stick my head above it I will be struck down. My doctor, a former sufferer, has told me, "you can't fight this illness, you must go with it". But as ixchelkali says, this is contrary to everything we have been taught. I feel I have had to be "beaten into submission" by my own illness to understand this point and gain a better life....and then I'm not sure I've really submitted.

 

[Cloud]

In my work as a Nurse, I had never seen a patient survive the level illness like what I had gone through in a period of severe bed bound ME/CFS. I spent 3 years in that abyss and, I'm still amazed to have lived through that. I just don't know of any illness that gets that severe, for years and even decades, affects almost every body system, and they survive. I can't think of one. I think the ME/CFS suicide rate says a lot about severity of this disease.

 

[OneWaySurvival]

But understanding the unique issues surrounding ME/CFS might help new folks learn how to cope with it.

No doubt about it, Ahimsa. This thread has been awesome for a new PWC like myself, hearing "coping" wisdom from many of you and reading some of the best observations about the challenges of ME/CFS that I've ever heard articulated. I've tried many times in my own brain to formulate some sort of explanation to others why feeling like crap all the time makes regular activities difficult to impossible, but it usually comes out sounding like an excuse or it sounds overdramatic to those that simply have not experienced it. Thank you Diesel for starting this thread. And to Ixchelkali, Ahimsa, and others here for your insightful descriptions that have opened wider my understanding of my own illness.

I'm now 33, and was in perfect health until age 29, then started experiencing a lot of joint pain and had unusually poor recovery from regular activity, until the limiting effects of CFS got so severe that I finally became disabled at age 31 and can no longer work, play sports, or do virtually anything that requires mental or physical stamina, and for the past 2 years have been sick every day with different degrees of PEM (and it's evil twin brain fog). Sometimes I can pinpoint the malaise and flu-like weakness to an exact activity, sometimes it's cumulative, and sometimes it's there for no good reason at all. It definitely gets more severe with more activity to where I can say with confidence, "the more I try to do, the sicker I become." I describe PEM (which for me intensifies and ebbs at different points during each day and night) as "flu-like fatigue", "flu-ish tremors", or "daily immune episodes." It's taken me a long time to realize the push/crash phenomenon and to stop trying to rebel against it (although I do rebel every once in a while just to try to feel normal again or to be a fun dad for my two sons instead of laying in bed; which of course comes at a big price either immediately or later). So, now after a few years of trial and error, I'm starting to understand that I actually have the power to make my condition worse (by pushing myself), but sadly I do not personally have the power to make my illness go away, or even get myself past a certain fragile plateau that is achieved (only temporarily) with 100% restful, therapeutic activity. In short, I can do many things that make me feel worse, but very little that helps me feel even temporarily better.

Ixchelkali, I think your wisdom about re-programming your instincts to not fight past the illness, but to go with it, is so helpful. I believe there are many PWCs that have not learned that yet (or know it, but still guilt themselves into doing damaging amounts of activity). We need to give ourselves grace. Your advice could save some degree of suffering for a lot of people.

Getting back to this thread's main question, I think some of the hardest things about this illness besides the illness itself are:
1) Little to no medical interventions (yet!)
2) Loss of productivity (affects one's sense of worth as well as devastating to one's finances)
3) Little understanding from the general public
4) Very tough on family members caring for PWC's (although my wife insists my value remains as high as ever to her and our kids)

Finally, I'd like to mention a few silver linings to my illness (sadly, I understand not all and probably not even many PWC's can claim these):
1) More time at home with my family (since I've qualified for insurance benefits)
2) Even though I'm too sick to run, I can walk (between recovery times) and that allows me to occasionally hike on a wooded trail and appreciate the therapeutic beauty of nature (which I honestly appreciate much more now)
3) Has made my viewpoint of God richer and stronger as I see Him working in the midst of suffering, and can find ultimate hope in Him
4) CFS has given me more compassion toward others who suffer
5) Get to experience life at a slower pace, with fewer external schedules to keep, pressures to face, commutes to drive (almost forget what road rage is like), and can invest what little energy I have into things most important to me
6) Friendship with PWCs that would not have happened otherwise

I better stop now or I might give the wrong impression I enjoy ME/CFS!

 

[ixchelkali]

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.

Exactly! I'm going to remember that quicksand analogy. Actually, sometimes a flare feels rather like trying to move in quicksand!

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

I like it when you get philosophical. :sofa:

 

[Sallysblooms]

I love the quicksand analogy. It is also like a rip tide for those of us near the beach. I have learned to "fight" hard, but not physicallly. I fight by researching, reading, and having good doctors and using the best supplements. Also, resting and doing what my body says I need to do. Before POTS, I was doing really great with CFS. POTS is a whole other ballgame.

 

[Cloud]

Yep, it's about changing focus with how we do the fight. It meant the surrender of many of my old ways of coping......you know, the old "just work harder if it hurts" mentality. But as most of us know, it also meant having to surrender things that gave our lives security, such as work, home, social life, etc. I too feel empowered by continuing those things that I can still do such as research, being part of a support community, and daily looking for ways to maximize my health.

Another analogy of having to surrender that instinct to fight for survival: Walking out into the horse pasture at a friends house, I saw a horse caught in the barbed wire fence. The horse was panicked and fighting ferociously to free itself, but the more it fought, the more entangled it became. It fought until it was on the ground unable to move wrapped tight in barbed wire. But when the horse surrendered, the barbed wire sprung loose. Yes, it took a little of my help to remove the wire....but that would not have been possible without the horses surrender.

I think that horse had more sense (horse sense?) than me knowing when it had to change focus to survive.

 

[Sallysblooms]

Aw, I am glad the horse is OK. Yes, he had to just surrender to get out. Panic isn't helpful. You can't think clearly. When I was much more ill with POTS, it was hard to stay calm when I had very bad times. I didn't always, but we have to try at least.