International ME/CFS and FM Awareness Day Is On May 12, 2018
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What makes CFS such a hard-edged illness?

Discussion in 'General ME/CFS News' started by guest, Aug 1, 2010.

  1. Mya Symons

    Mya Symons Mya Symons

    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"
  2. Angela Kennedy

    Angela Kennedy

    Essex, UK
    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?
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    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.
  4. Wonko

    Wonko Senior Member

    The other side.
    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
  5. Megan

    Megan Senior Member

    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.
  6. Cloud

    Cloud Guest

    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.
  7. OneWaySurvival

    OneWaySurvival Senior Member

  8. ixchelkali

    ixchelkali Senior Member

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

    I like it when you get philosophical. :sofa:
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    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.
  10. Cloud

    Cloud Guest

    Yep, it's about changing focus with how we do the fight. It meant the surrender of many of my old ways of 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.
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    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.

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