arrow49 Comments
  1. Pam Barnett
    Aug 03 - 2:36 pm

    This is me. :-(

  2. Pam Barnett
    Aug 03 - 2:37 pm

    This is my life….I’ve had CFS since 1991….21 years!

  3. Issie
    Aug 03 - 2:57 pm

    Oh, how we can all relate. We do push ourselves when we’re having a good day and then we’re down for the count. How many days it may take us to recover —no one really knows. It takes however long it takes. But, we WILL do it again. When we feel better and our body and mind is cooperating with us –we try to do all the things we’ve let go. It’s a wonderful day. We just have to be happy for those good days — appreciate and cherish them. And then when we do ourselves in again —keep reminding ourselves of those cherished days and know they will come again. I enjoy your writing. I love the visual description. I can see it and feel it. Hang In There —-we’re all holding the rope.

    Issie

    • Cort Johnson
      Aug 04 - 4:18 pm

      I think the drive to do things even if gets us in some trouble and is so, so hard to contain – is a good sign! So long as that drive is there there’s hope, I think.

      Having ME/CFS is almost like being faced with an existential crisis every day :)

    • Carol
      Aug 05 - 8:09 am

      Thanks, Issie. Love the rope image and the reminder to wait for the wonderful days. They still come along.

  4. Christian Godbout
    Aug 03 - 3:27 pm

    Dear carol

    It really feels good to read such a resolute meditation on the experience of crashes. I absolutely share your puzzlement and disarray before them, as well as your desire to make sense of what in the world is going on inside us when they are occurring, as they are occurring. Right there and then.

    Indeed if you think of the several theories of ME in general (defective natural killer cells? dysfunctional mitochondria? ), – do they help in understanding what happened when, at 3 pm yesterday, you suddenly started crashing…? Probably I suppose.
    But, they do have this frustrating tendency to remain in the realm of the general, while crashes, like you mention, are so particular and punctual. I too would love to have all the doctors, blood tests, brain scans and all, done right there and then as I am collapsing. Or some magical X-Ray of the crash experience.

    Suffering from ME is one thing; crashing is another.
    This statement seems nonsensical, but in theory, I could be an ME sufferer who never crashes; I probably could go on for 6 months without a single crash. All I would have to do is remain inactive even as I see my health improving. In theory.
    In practice: virtually impossible, and we all know how the story goes. You resume life up to the point where you provoke your next crash. To quote Issie we WILL do it again!
    Not being able to make sense of it becomes in the end an existential crisis as you say.
    An absurd and hopelessly Sisyphesque experience.

    Thanks Carol for sharing these moving pages of your journal here. While you may not provide the explanations you seek, you do provide vivid words, and that has lots of value.

    Now if anyone here can help in making sense of the damn thing and give a “crash course” so to speak, the anatomy of the crash itself, not CFS entire, by all means go ahead!

    • Cort Johnson
      Aug 04 - 4:21 pm

      From Christian – “I too would love to have all the doctors, blood tests, brain scans and all, done right there and then as I am collapsing. Or some magical X-Ray of the crash experience.”

      That’s what I say…stress us out; push us over the edge and measure, measure, measure….

    • Carol
      Aug 05 - 8:22 am

      In the midst of a bad crash, I’ll sometimes resolve to stay inactive — under the covers (if I’m undercover, maybe the crash demon won’t recognize me?). But as soon as a bit of stamina and clarity return, I’m unloading the dishwasher or doing a load of laundry. It’s sad but validating to know that others are pushing rocks up their own hills.

  5. Mary Jane
    Aug 03 - 4:28 pm

    I try my hardest to practice gratitude everyday, sometimes it works. Today I am grateful that you, Cort and many others still have the gift of putting thoughts on paper that inspire and give me that ‘uhhhh’ feeling.

    • Cort Johnson
      Aug 04 - 4:23 pm

      Gratitude sometimes really does work doesn’t it? Other times it doesn’t but who cares – sometimes is does…I’m grateful to you for reminding me…:) Thanks..

      I’m so grateful to Carol for putting these blogs on Health Rising…They are a treasure to me…

  6. Suella
    Aug 03 - 10:55 pm

    Crashing? I think my crashes are almost always self-caused.

    I was asked recently what is it with my unmet needs that makes me act unhealthily?

    When I squeeze one more thing into my already planned schedule, I am actively participating in self-abuse. I know this and yet I continue to do so. Am I really accepting that I am ill and need to continue to take care?

    And I know my crashes take longer and longer to recover from as I get older. To get back to a level I was months ago and then have to go on again to try to improve. One overdoing can lead to a month or more of feeling well below my then current CFS level. Snakes and Ladders springs to mind.

    I’ve had ME/CFS for 11+ years. The only thing that has really helped me understand how I can manage and improve my personal illness is doing Bruce Campbell’s course. http://www.cfidsselfhelp.org For me, continuing to revisit important topics in managing aspects of my illness with his discussion groups helps to keep me reminded of what works for me. I know I would more regularly crash otherwise.

    I know can fight off flu and colds if I am operating within my personal rules and supporting my limited energy envelopes. My cognitive, social and emotional envelopes are my weakest areas. If I’ve done too much there the negative pay-off is the greatest

    In theory, I have logged, I know the time of day that is best for me, I know how to take pre-emptive rests and flat rests that work for me. I have a diary, rules for how many out of the house activities per week, rules for how many high level activities themselves per week.

    But I can still be side tracked for my greed for experiences. I can’t always say no if something I really, really want to do is offered. I had a book mark in my planner asking “What’s the Tradeoff?” I need to reinstate that.

    I have a phrase that comes up daily on my online schedule: Feeling Good is VERY Dangerous. I have to be more careful then in not taking on anymore than I know I can safely handle. I have personal rules that I know work. Why do I think I can suddenly do more?

    Carol’s week would certainly have put me into the jet-lagged, flu ridden, hung-over, hit by a truck feeling too. It is a great example of long term scheduling upset by unexpected insertions such as hospital appointments and funerals. And all this after a garage sale at the weekend previously that she was just getting over. OMG. I suspect she won’t do this again.

    My husband is my seconded partner in my illness. He now reminds me to go lie down after some exertion, and supports me have rest days before and after an outing. He also will have taken over my animal care duties on a day I attend a full day class/activity where I will come home exhausted, but tired and wired and prepared to spend an hour outside in the cold and wet. I am eternally grateful to him for helping me have some semblance of a new life.

    I recently have been trying to stop myself from my occasional going outside my rules with thinking about how much more trouble I am making for him when I do. I am inspired to involve him more in looking my weekly scheduled activities, as he can help me see pitfalls or where I am still doing too much. We go to breakfast on a Sunday, read the papers and talk. That might be the best time to look at my week’s plan.

    I also need to see how that fits into my plan for the month and for the year. Otherwise it is far too easy to book too much, especially during the holidays.

    I love attending a half day class in textile arts at a local college. But should I have this weekly commitment, albeit for 10 week terms? If I’m still struggling with symptoms, then maybe not for the autumn term?

    Some thinking aloud about my self-caused crashes and how to minimize them. I love to read what others have to say on this topic.

    Suella
    Progress not Perfection

    • Cort Johnson
      Aug 04 - 4:29 pm

      Thanks the wonderful and heartfelt post Suella and thanks for reminding us about CFIDS Self-Help..

      Boy, this really got to me –

      “But I can still be side tracked for my greed for experiences.”

      We want experiences, we want to get out and enjoy, to walk the frigging dog (or dogs in my case (lol)).

      This is why I wrote that having ME/CFS is liked being faced with an existential crisis (maybe problem is a better word) every day…

      Do I ignore my health and go for the experience or can I find peace and contentment where I am…

      It’s one of the hardest parts of ME/CFS for sure.

    • Carol
      Aug 05 - 9:24 am

      Thank you for so effectively expressing the importance of gaining some control over our lives through, first, understanding our limitations through past experience, and second, through planning activities in advance based on that understanding. Unfortunately for me, I don’t seem to be able to rely on that past experience. What I can do safely during one ‘good’ span will cause a disaster during another.

      I love your phrase “my greed for experiences.” I’ve asked myself the same questions about attending courses.

      We are lucky to have loving, supportive husbands, such a big factor in coping.

      All the best,
      Carol

  7. Tanya marlow
    Aug 04 - 11:20 am

    Love this. I have written a post called ‘relapses and mountain climbing’ which focuses on that fear and helplessness. I LOVE the Elmer/tweety bird mental picture. Thanks!

    • Cort Johnson
      Aug 04 - 4:30 pm

      Can we have a link to that post? I love the title :)

    • Carol
      Aug 05 - 9:25 am

      Me too. I’d like the link to your post.

  8. Katherine
    Aug 04 - 11:57 am

    Crashing is always surprises me; I keep doing the same thing expecting different results, is this insanity? Well, I don’t believe I’m insane, but when I’m feeling good I want to experience every last bit of the joy of motion. There is a price to pay, but that’s tomorrow.

    ” The fog comes on little cat feet…” then BAM! is right. But it feels so good when it’s good.

    I’ve thought about the jealousy of others who are active and I know I feel grief when confronted with the vital lives of friends and family. But that’s so all about ME! ME! ME!. I have been attempting to change my perspective and be happy for my sisters triathlon time or the vitality I see in others. Am I jealous? Maybe, because I tend to avoid FB pics of people doing what I am no longer able to do.

    A therapist used to ask me: are you happy, sad, angry or scared? All of the above!

    So great to know I am not alone and love reading your blog and the comments.

    Katherine

    Katherine

    • Carol
      Aug 05 - 9:28 am

      I just wish we would get to the last line of Sandburg’s poem: “and then moves on.”

    • Dawn
      Sep 22 - 10:26 am

      Katherine said “Am I jealous? Maybe, because I tend to avoid FB pics of people doing what I am no longer able to do.”

      Facebook. Yeah, I tend to “hide” all of the feeds of my “old” friends – the ones with horses. I was a riding instructor and horse trainer – in my old life. Too hard to watch them moving on when I don’t even have a horse…. I used to try to rise above that – but i have decided that I am a “doer” and not a helper or watcher. If I can’t do it, I would rather just avoid the whole thing….lol.

      This illness is no place for wimps…….one foot in front of the other – each day.

      Dawn

      • Cort Johnson
        Sep 22 - 1:54 pm

        One of the more difficult things about an illness that hampers activity levels so much. Not many illnesses do that!

  9. Laura Vitale
    Aug 04 - 12:59 pm

    Hi Carol–That is quite a dream you posted. Wow! I’ve been studying dreams since I was 15, and eventually earned an MA in psychology back in 1986, during a time when I was healthy enough to work and go to school. My focus was on the work of CG Jung, ML Von Franz, James Hillman, Joseph Campbell and others who were symbolically oriented and creatively inclined. Over the years, I’ve facilitated dream groups and done individual dream consultations whenever I’ve been able to pull that off. I’m telling you all this in advance so you will know why I can’t help but comment on your dream. It really grabbed my attention, and I have some ideas about it that I would like to share with you.

    I’ve been ill with CFS since 1977 and have kept a dream journal through most of the years of my illness. I’ve had many diagnostic dreams, warning dreams, as well as healing dreams. I’ve seen, repeatedly and over the long haul of three and a half decades, how my dreams give me input abut my life, my health, my relationships, and how I engage with both my inner and outer reality. I also learn a lot from the dreams of others who are dealing with illness and pain in their own lives. Your dream was especially edifying for me in regard to some of the powerful metaphors it presented. My reflections about it will be based on my own similar experiences in the dream world.

    If I had a dream that started and ended with the metaphor of “bleeding,” I would seriously investigate how I am using my energy and what I am “pouring” my vital force into. Because the bleeding in the dream is happening from your female organs, it makes me wonder how much of your very limited energy goes into nurturing and pleasing others, these being habits that women especially tend to fall into. It’s interesting, too, that there is a “line of students banging on the door of the stall…” Could these be the real life demands of others bleeding you dry? And how do you “stop the bleeding?” In the dream, you don’t stop it. You “run,” you “bolt,” you “speed through the halls.” It’s kind of exhausting to read about it. But in all honesty, it seems a lot like the first part of your story, which happened in the real world and sounded a bit like an ongoing marathon, beginning with a yard sale, colonoscopy, moving through the yearly dinner for “Steve’s former law clerks,” then a Rutger’s football game, and then finally a crash. I couldn’t help but notice your comment interspersed in the mix: “I felt the continual pressures for hostessing.” Which begs the question why? If it was me, I would want to know where that pressure was and is coming from. I would not want it to take me barreling down into yet another bloody dreaded crash.

    Living with ME/CFS is like living with a limited number of spoons… didn’t at least one person use that image to explain the limits of energy we have to contend with being pwME? But now that I have read your dream metaphor about bleeding, I much prefer the image of BLOOD. When I am faced with someone or some thing that requires my energy, I am going to ask myself, “Is this worth my life’s blood?” And I hope that you do the same.

    Thank you for sharing your dream.

    • Carol
      Aug 05 - 9:29 am

      Wow. You’ve given me so much to think about!

      • Laura Vitale
        Aug 05 - 9:50 am

        Thank you Carol. So glad to hear that.

  10. Jeanie Pochatko
    Aug 04 - 2:42 pm

    Everytime I am feeling better, Carol, I push myself to….live! That is the thing. I guess there are some with CFS ( I know a couple) that have given up and just sleep, watch TV., and that is all. I will push myself to be a viable human being as long as I can, to contribute to my family, to help lift their loads even though I know the next day, or that afternoon, I will have hell to pay.

    I will just deal with the crash that comes up even sometimes when I do little, but for sure, and I know its coming, when I am fully engaged. The problem is, my family thinks that when they see me doing life that I am not as bad off as I really am, and then are unable to wrap their brains around why I can’t keep going, or do the same thing the next day, or walk up that flight of stairs during the afternoon, or watch my grandson for another hour.

    If they, and others, could only realize that when I give all I’ve got, then that will probably be it for the day and maybe a while to come. But it remains a puzzle to them, still, what happens to make me fall apart. (although, Cort points out, we are just now discovering the whys ourselves and the so-called medical experts still are puzzled and oftentimes totally in the dark themselves, so how can we expect family and friends to understand.)

    I guess we just have to have the guts to say a big..”NO”, even when it kills us to do so.

    I appreciate Cort’s technical, medical research articles, though hard to wade through sometimes, and so your journals are so appreciated because they are us! We all are living what you write about. thank you.

    Jeanie

    • Carol
      Aug 05 - 9:32 am

      I’ve experienced the same reaction from my family and friends. What a difficult, teasing disease this is. And I love your phrase “doing life” — all the little things that well people take for granted.

  11. Holly
    Aug 04 - 7:01 pm

    I do not have CFS; my 24 year old daughter does. Although I do not remember reading comments from others who do not have this illness, I am compelled to let you know how highly I value your open and honest communication. I am brought to tears as I read your thoughts, but at the same time this gives me the opportunity to let down my guard and confront my feelings of loss associated with my daughter’s illness. As the primary caregiver I try to be a good listener and communicate that I have some sense that I understand how this illness affects her daily life. As you all know, it’s not possible for anyone without CFS/ME to completely understand what you live with from day to day. I have come to believe that the best I can do for my daughter is listen, believe and respond in a supportive way to whatever her needs are at the time. Perhaps even more importantly, I try to give her permission to pace herself guilt free. I see that she struggles with what she wants to do, or what she thinks I or others want her to do, and this often leads to a crash.
    I find it helpful, and perhaps a little empowering, to read all I can about this illness. I use to send my daughter articles I found particularly interesting, however; she asked that I stop because it was just too depressing. I realize everyone finds their own way of coping, so I honor her request. I am hopeful that her current treatment of valcyte will reap some benefit, but it’s too early to tell. My thoughts are with you and I will continue to read and enjoy your supportive sharing of ideas, thoughts and knowledge.

    • Carol
      Aug 05 - 9:35 am

      How lucky your daughter is to have such an empathetic, wise, understanding parent. I hope that she is young enough to benefit from the current research and possible treatments.

  12. Gerry
    Aug 05 - 5:46 am

    Wonderful,Informative,Postings…………

  13. Kym
    Aug 05 - 10:51 am

    I’m in the third day of a crash that is building up steam, pulling me down.

    Life doesn’t stop or even slow up for us. Or, care.

    My mother called about 12 days ago from the hospital saying she was being admitted for emergency colon surgery. A tumor, malignant, was obstructing her intestines. I rarely say “no” to her but earlier in the week I had said “no, I can’t take care of you for your colonoscopy.” Of course, disaster struck.

    Even though I have two brothers, I’ve always been her child, bound in a slavish-sort-of-love, to see her through these sorts of horrors. Last year, in September, she was hospitalized for spinal meningitis and nursing homes for recovery. She’s had more surgery and hospitalizations than I can keep count of.

    Getting a call like that, my adrenaline surges and even knowing what a cost I’ll pay…I go into action. I’m there for the prep and operation, there for her dementia and rage brought on by who knows what, there to beg my brothers to help “BECAUSE I CAN’T DO IT,” there to explain to doctors, to relatives, to her friends the unfolding drama and acknowledge the miracles that she survived surgery, that she survived at all.

    I’m grateful. Thankful. I’m spun with opposing emotions: relieved, angry and guilt-ridden. No one knows the pain I’m suffering today because I chose to love/serve this person, this elderly miracle, who a couple of days ago was in her hospital bed yanking at her IV lines and hissing to her grand-daughter, “someday she’ll treat you like this” as I tried to talk to her doctor about her discharge. I know, from personal experience, pain will make you mean as a snake. I try not to get my feelings hurt, but I do.

    With my own ambiguous diagnosis, I struggle. And inevitably, fail. Normal people can’t understand the effort, energy and dumb-can’t-think-anymore drive it takes in these times. Or, anytime. How running errands is no long an option…but a marathon.

    Now, I’m collapsing with a crash down a long, painful tunnel, trying to breathe, remember all I’ve learned but still panic is at the edge of all things. There is no one to here to see me through it except my computer and forums like this that I can read when my brain allows it.

    Maybe that is why I have to write today, make a connection.

    While there is some sick comfort in knowing that I’m not the only one: I wish none of us had this A-to-Z set of symptoms and illnesses to navigate every day. Or, the crashes that try to kill us off.

    I’m facing financial ruin, yet, today I’m too numb to speak to an attorney or try to save myself. I did read my report from the last fibro expert I saw…the picture is the same as yours. Pace, supplements, some pain meds. I pray and pray and pray. Not begging. Just praying for a way, the path toward life, not hell while I’m in my body.

    Thank you Carol for processing your experience and communicating about it in a way so people can understand. Thank you Cort for translating the medical-speak for us. Thank you to this community for somehow holding on to hope. I want us all to feel better.

    • Carol
      Aug 06 - 8:56 am

      Dear Kym,

      I too have been the primary caretaker for invalid family. My father developed Alzheimers and my brother has been developmentally disabled from birth. I agree that others can’t get close to understanding the extra physical and emotional burdens faced by someone responsible for the needs of others when he/she is chronically ill.

      And then the person you take care of doesn’t or can’t appreciate or even recognize your efforts. I can only hope that in the long run, we’ll benefit from knowing how much we were able to do in the midst of such profound struggle.

      Thanks for sharing your thoughts and experience.

      Carol

  14. Sarah L
    Aug 05 - 12:10 pm

    That is an excellent description of the daily decisions, and their consequences. Thank you for sharing it. I cannot express my limits and consequences in such clear terms, nor negotiate with anyone when I am in a crash, as you do. It is wonderful how you and your husband do that.

    Well past twenty years of this disease, I am declining every so many years in what constitutes my normal state. Any time I reach out for a normal experience, I am not really there fully, having problems with my cognition from the start. But I never can explain it or know when not to mention it, to gave a bit of real life in my life.

    Thanks,
    Sarah

  15. Caryn
    Aug 05 - 6:48 pm

    I am in awe and, even after several years of fighting CFIDS and fibro, I have yet to master pacing myself. I’ve done it on business trips, after vacations and just middle of nowhere, I crash into bed and I’m done for days. Thank you for inspiring me to keep trying, keep pacing and not stressing over the crash-and-burns.

  16. Cecil
    Aug 05 - 7:17 pm

    I cried as I read this. I could relate to it so much.

    I live in the Philippines. I’ve had the symptoms for years. My husband is a doctor and he says CFS is a wastebasket diagnosis. So I’m still undiagnosed. I’ve had so many tests done. I’ve been to several doctors who start by recommending tests but after getting the results that doesn’t jive with their initial diagnosis, just look at me in a patronizing way and say, “Come on, don’t think about it too much. It must be psychosomatic.”

    I hate it. But I go through it again after a year or so because I can’t bear to feel this way and yet not have any diagnosis at all. So I try to find new doctors, from cardiologists, rheumatologists, gastroenterologists, endocrinologists, immunologists, and whatever-ists, and the most honest among them eventually admit they are unable to help me.

    The symptoms get worse over the years. I used to be able to hold a job. I was quite good at masking the symptoms. I just pretend to work on my laptop and stay away from people on bad days (too tired to even talk) and only file a leave when I cannot get out of bed. Now I can’t even hold a job. Some days my brain can’t even hold a thought or understand what I’m trying to read.

    On good days, I hate that I’m letting my talents and skills go to waste. On bad days, I try not to feel too sorry for what I have become. I’m still in the process of trying to find a balance. I’ve just come to terms with the realization that with my current condition, I have to give up my dream of having another child. It was a struggle for me to accept that because I’ve already given up so many things because of this illness.

    Thank you for sharing your experience. It helps that someone somewhere can understand what it’s like. It can get lonely here by myself, especially with a husband who starts blaming me when he feels powerless to help. I understand where he’s coming from but it would be much better if he could understand my side, too. Maybe if I let him read this article it can help shed some light.

    Cecil

    • Carol
      Aug 07 - 6:48 pm

      About ME/CFS as a “wastebasket disease,” Adrienne Dellwo says on About.com: “We’ve got well-documented dysfunction in our central and autonomic nervous systems, immune response, hormones, blood flow, cellular reproduction and more. These doctors need to update their thinking and stay on top of things, because by sticking with dark-ages thinking they’re violating their oath to do no harm.”

      Like Cort’s Health Rising, many websites publish the reports from doctors researching various aspects of the disease. I hope your husband will take advantage of all this information. The metaphor of the wastebasket reinforces the notion of the sufferer as worthless trash.

      It’s so hard for others to grasp our daily experience of loss after loss.

      Carol

      • Cecil
        Aug 07 - 9:57 pm

        Thanks Carol! :)

        Okay, I’m done feeling sorry for myself, at least for now, haha!

        In some strange way, I am also thankful for this disease. Because I have limited energy, I need to prioritize what is important to me. While it is true that I had to give up a promising career in IT, I feel that I have chosen the best part – investing in my relationships. I may not have invented some newfangled gadget but my son thinks I’m the best mom in the world. That is more than enough for me.

        I also found that serving others makes me feel better. Always watching out for myself can get a bit selfish at times. To get out of the “me first” glut, I go out of my way to do something for somebody else. So what if it taps into my reserved energy? It’s worth it because it validates that I still have a purpose in this world.

        Knowing the disease is not life threatening is a big factor. I just need to find what gives meaning to my life. While most people measure success by how much they are earning or how influential they are, I find that happiness is in the small things that I do. I give myself time to grieve for the things that I’ve lost or given up. But life goes on. And it’s still a good life despite this illness. I have to believe that.

        Cecil

  17. Linda
    Aug 05 - 10:23 pm

    I know exactly what I am doing when I do it. I know that when I don’t stop that I will crash. I know that the longer I put off the rest time the longer and harder the crash will be. I know that sometimes it takes 2 days or more before the crash hits me for over exertion, and that I shouldn’t push until I feel it. I know it and I do it anyway. One of these days maybe I’ll stop. I always plan to. But, somehow I just keep on doing this, running and resting in vicious cycles. I am working towards putting my health first. I am making progress.

  18. Shirley
    Aug 05 - 10:43 pm

    So beautifully and perfectly said Carol. And the posts, are amazing. All so me, as I also try to live as much experience as I possibly can. I’m not sure how destructive that is. What is dismaying for me, if I have a longer good period, I begin to fool myself into believing that this is the start of getting better, this time, this is it! For 15 years I have been doing this! But I have gotten better through a long series of treatments, so I convince myself that it will be ok to do just a little more, one more task, one more errand, one more class or one more dog walk. Wrong! At the end, I think, I hope, of a month long crash, I am working on watching out for that “delusion”, rest or maybe rest longer when I feel that desire to do one more thing. So great to read all this. Such an incredible group, I don’t know what else to say. Thank you all.

  19. Fiona Goffe
    Aug 06 - 12:14 am

    An amazing blog and so many comments I relate to. It really is a kind of torture. I’ve been ill since the late 80s, diagnosed 1990 and now nearly 60 have accumulated all the conditions that and 80 year old would have on top, most of which can be attributed to/or associated with ME one way or another.

    Maybe one day they will really understand and be able to treat/help/cure this condition but it seems a long way off to me….

    It’s good to know you’re not alone and the internet has made such a difference to me. Thank you for this blog.

    Fiona

  20. Shannon Hutcheson
    Aug 06 - 1:33 am

    I was diagnosed with Fibromyalgia in 2011. So while I ended up with an epiphany of symptoms that had been bothering me for decades, I didn’t really *know* what was going on. Everything added up over the years, you know?

    So here I am (as I think most of us with this condition/disorder/disease are) a busy minded person stuck in a body that has betrayed me. I want to do the things I used to be able to do SO badly that when I’m feeling good, I inevitably do too much and crash.

    I have been flirting with this push-crash ever since. I know better, I really do.. but I think my mind just wants to ignore that I’m not my “normal” self anymore. That I really CAN do everything I want to get done now! Nope, doesn’t work that way anymore does it?

    So I think we do earn these crashes. We bring them upon ourselves willingly lol, if not intentionally. We want so badly to be able to do the things normal people can do, what we used to be able to do whenever we wanted. Our guilt for being sick makes us strive to please others, especially when they don’t (or won’t) understand.

    I think it’s far too easy for women to forget to look after themselves. After all, we tend to be the nurturers, not the ones needing nurtured. The fixers, the menders of fences, the mediators. You know how it goes.

    So who will nurture us then? Well, we do have each other. Thank goodness for the internet! If not for being able to meet other people who truly understand what this is like, I’d have been in a much darker place indeed.

    #spooniehugs to all of you <3

  21. Valerie Free
    Aug 06 - 9:24 am

    The most interesting part for me with this blog, Carol, is the fact that you do become functional for periods of time…repeatedly. Almost like small remissions? I do not have that and never really have complete good days. It is like my body found a 30-40% place to land 20 years ago and stayed…never to have those bigger breaks. I think becoming pretty well and then crashing would be very difficult to manage because of the drastic changes. It also leaves people more vulnerable than a steady state of lower functioning. But then at lower functioning, we never get to enjoy the highs of a better day.
    There doesn’t seem to be a better or worse way to be. It is just darn tough no matter how ill with ME/CFS one is. It also would be very hard on a spouse to have you functioning one day and then not. What a ride. Are there any other illnesses that have this problem?

    • Rin
      Aug 06 - 10:47 am

      I am similar actually, at first when i got the first ‘crash’ that got me sick, it took a year, then suddenly i got ‘better'(functioning at about 70%) for almost a year and a half! then suddenly, BAM, so sick i thought i was going to die, now I don’t get those periods of ‘better’, anymore, just less cruddy than before, but I stay at a 20-50% operating range pretty much permanently now. The winter is actually when I operate the best, heat is notttt my friend.

  22. Rin
    Aug 06 - 10:44 am

    I’m 23 and have had me/cfs since i was 17..its been an immensely struggle to see my friends and brothers graduating from college, when i’m unable to physically attend. It took four years to get diagnosed, and I’m definitely having to learn that ‘pacing myself’ part.. I’m not good at it..at all. When i feel well I have to do /everything/. Cook, clean, go out, anything to try and catch up on normal experiences. I’m sure others know how that goes..but it leads to that inevitable crash.
    that ‘Just relax, dammit’ part really got me, haha. Because after having literally everyone say that, I’m wondering how on earth I’m supposed to! Haha. My family gets a B- in effort for at least trying to understand it..but like in the article, you get that constant ‘dissapointed’ face thats just killer when you can’t go out to eat, or go to a function, and so on.
    What’s really got me through is my dog. He helps me decompress, and have the will not to just vegetate in bed in my woes and aches and pains, haha. Everyone’s just got to find that little nugget of joy they can always depend on to get them through those crappy times, and to strive to get yourself over that hump. I refuse to let this get the best of me! I’m much to head strong for some unknown assailant in my body to staple me to my bed, haha. Keep fighting!

    • Cort Johnson
      Aug 06 - 3:49 pm

      Keep fighting Rin! :)

  23. Darlene
    Aug 07 - 1:05 pm

    CFS took over my life over 17 years ago, but I’m sort of new to the online CFS support crowd. It’s been so amazing to read posts like this that so clearly echo my own experiences and feelings. Thank you Carol for the effort this must have taken. Just this little post will take it’s toll on me. I just wanted to say that it amazes me how incredibly brave we all are to keep reaching for the little bits and dribbles of “normal” that come our way. Also, one of the hardest things for me during a crash is just how humiliating it is. I always want to crawl deeper into the pit, close the door and stay there all by myself until I can join the world of the living and at least fake normal for a few minutes. I hate that CFS took away my ability to be the kind of sick person I wanted to be, a cheerful invalid who suffered pain without ever complaining and brightened the day of anyone who came to visit by offering wise insights about life. I despise being fagile, but it chases me everywhere. So does beauty though, eventually.

    • Carol
      Aug 07 - 1:57 pm

      You mean like “Tuesdays with Morrie”?! I’ve had the same fantasy, and sometimes feel the same humiliation. I wonder how many invalids can truly evolve into such a guru. Yikes!

      • Darlene
        Aug 07 - 5:06 pm

        Yes, maybe guru status is setting my sights a bit high, :) but I’m pretty sure that if my only limitations were physical it would be much easier achieve. After all this time you would think that each crash wouldn’t be able to re-suprise me with how disabling this is not only physically or cognitively but socially, emotionally and even spiritually. It’s like you just got run by a truck and while you are lying there bleeding a dementor shows up to feed on your soul. It takes my breath away every time.

  24. Lisa Myers
    Aug 14 - 9:27 am

    Carol,

    I’m a little late to the party seeing and discussing this article, but I had to tell you how much this struck me. You have so poignantly described what so many of us experience, and the complex emotional layers that result. What a writer you are! Your insight and inspiration is a comfort to all of us. I’m posting this on my FB page. Thank you for writing it.

  25. […] time I travelled interstate I “crashed” (nice little personal story on what that means here) for a week because it sapped my energy. I crashed again when I arrived back home. Australia needs […]

  26. Dee
    Feb 11 - 5:09 pm

    who has to PUSH when all i have to do is SNEEZE and i’m down and out and feel Deathly ill from hours to days!!!

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