Image from a Victorian annual of a sick girl wishing she had the internet instead of a stupid, only marginally interactive bunch of lavender.
Note: This entry is pretty much one big whine. When you’ve been sick for ten years, you get a coupon in the mail that entitles you to one 1800-word whine. I usually try to be at least somewhat upbeat and hopeful on the blog; I’ve made no attempt at that here.
The Sunday before Memorial Day in 2004, approximately 18 hours into my first crash, I was struggling up the sidewalk to the emergency room of St. Agnes Hospital in Fresno, when a man coming from the building stopped in his tracks.
“You look really sick,” he volunteered.
And that lay diagnosis, ten years ago, was, more or less, the beginning of my life with ME/CFS.
Ten years. There’s something so final about having finally rounded out a decade with this thing dogging me. I knew a long time ago, long before the five year mark, that if people were to get better, they generally did so by then, and despite my early convictions that I would get well – that I, of course, was the kind of person who would get well – it wasn’t long before I knew I was going to be one of the ones who didn’t. (It turns out that chronic illness’s position is that your self-concept doesn’t mean squat.)
So I’m no less likely to recover than I was before rolling over this anniversary, but there’s a greater sense of my well self being gone for good now that I’ve arrived at it.
And on this occasion, I have a confession to make: I’ve been struggling to write for the blog of late.
Part of it is an effort toward keeping myself sane. Writing about being sick requires focusing on being sick, and most of the time I would rather be plugged in to all the things I do to help myself avoid remembering that I’m sick, despite that I lie in the same place all day and am really, really sick.
Another part of it is that I sometimes think I’ve run out of things to say about it. A decade in, it’s hard to come up with new content when life remains so much the same from day to day.
I have two choices on this front: I can write about the life that I have, or I can write about the life I lost. And in terms of the life that I have, because it’s so much the same from day to day, there are few noteworthy events to put into words.
And what more can I productively add about the life that I lost? It’s been receding in the mirror for long enough that I no longer feel it’s relevant or that I’m relevant. If I were someone who’d left the job market voluntarily and wanted to go back into it now, I would be significantly out of date. That comes through when I try to write – I’m so disconnected from the well world that I struggle to know how to relate. I know that I’m to the point that I don’t know what I don’t know about what’s changed out there.
It seems, more and more, like I’m turning into the kind of pathetic person who clings on to past accomplishments for the lack of any current ones. “Glory Days” is not an anthem to aspire to, after all.
My last paycheck, the last time I cooked a meal, the last time I went shopping, the last time I went out in public on a semi-regular basis – because of too much pushing for too long, all that was six years ago.
I didn’t do a good job of envisioning what my life might be like if I didn’t get better. For a long time, I attempted to keep things as much the same as I could and have ME/CFS disrupt my life as little as possible, thinking healing would happen nonetheless. That meant I wasn’t truly anticipating where I could be in five or eight or ten years. I just presumed that I would be able to keep on the way I was, with minimal adaptations. And that was the wrong call. The illness did not stay the same for me, and eventually it landed me solidly in this ditch.
It’s like living in a permanent Throwback Thursday. When friends post pictures and say “So long ago!” it doesn’t seem so to me. My well identity ends ten years ago; I feel like it must be still 2004 and any minute now my body will kick into gear and time will start moving forward again for me.
My well friends’ lives are going on. They’re past the point in life where most people are in entry-level positions. More and more of them are management, in executive positions, in business for themselves. They’re not rank beginners anymore, not just in a place of promise. To paraphrase Dave Barry: Once we were The Hope for the Future; now they’re The Hope for Right Now. I’m immensely proud of them. But it’s not a place I’m entitled to relate to; they’re not my accomplishments, I haven’t put the work in, I haven’t gotten to that level. And I’ve lost the promise I had. It didn’t pay out. I got sick, I lost my nerve, I crawled into a shell to protect myself. Eventually I had to retreat from the world entirely, and that’s where I remain.
Instead of realizing my potential, I’ve been busy continually failing to improve. I know it’s “not my fault,” but if you’re sick for any length of time, you will find out it is your fault. Because you will be told dozens of things people have heard worked for someone’s aunt’s friend’s sister, and you’ll have a constant nagging feeling that one of those dozens of things must be the thing that will work for you, and you’ll be racked with guilt since you haven’t tried all of them because if you don’t, how will you ever know, even though you’re at 100% of your energy allocation just getting through the day and trying to deal with the inevitable unforeseeable frequent crises the disease throws at you, and you’ll get one more email saying your aunt’s friend’s sister did whatever for your current crisis and then the useless and overwhelmed and utterly defeated sensation will descend on you all over again.
Well, maybe you won’t find yourself there. But I have. And honestly, there is only so much you can try while taking care of yourself and staying sane and well (to the limited degree that “well” applies). When the decision for what you use a week’s energy on is between “see a loved one briefly” or “have a short phone call” or “try a new thing,” what do you do? When everything you might do takes at least a week’s energy, and every year you lose at minimum a couple weeks to each doctor appointment, then a bunch of unforeseeable periods of unpredictable length to random downturns, and some additional weeks to carefully changing to new bottles or brands of things you already take (because the only way to identify problems is to change one thing at a time), how do you ever get ahead with those maybe two dozen weeks a year?
The truth is, you don’t. I don’t, I’m not, at least. I’m just trying to stay in place. I’ve fallen below the invisible line where I believe significant improvement is possible (and your aunt’s sister’s friend will tell you you’ll never get well if you don’t put the right energy out into the universe, so it’s a self-fulfilling prophecy). For years I’ve kept thinking that in another year I might be just housebound instead of bedridden, but with my loss of the garden walks I managed the previous two summers, I am forcefully reminded that even some of the best care available anywhere and an enormous, supportive network of family and friends is not always enough to even stay in place.
***
Over the last ten years, I’ve lost touch with what made me a good writer in the past. Some of this is the cognitive dysfunction of the illness; I can remember it eating away at my insight and ability to make connections as far back as the first couple years I was sick. I used to think of myself as bright and perceptive, and those make interesting writing possible, but I feel very far away from bright and perceptive now. All the stuff I take to keep me alive – the half-dozen soporifics I swallow for sleep every night – half of those are psych drugs, and one of them has an especially bad rep for leaving you feeling lobotomized. But it’s what’s keeping me alive, so I stay on it and deal with my brain being made of Play-Doh. I know those parts are in there, but when I try to reach them, I have no access. It’s like running with a kite on a still day; you can try and try, but if there’s no wind to catch, you’re not flying anything.
The effect of the sleep cocktail is more severe (in terms of how much it cuts me off from higher functions) but less emotionally alienating than the Prozac I took in high school. On Prozac I could still get to some of the creative parts of my brain, but I felt like I was rolling around in one of those balls you put hamsters in to give them exercise. I could experience the world, but none of it affected me emotionally. With the current cocktail, I can feel the world a little bit more, but the creative part of my brain is not there as it was in the past.
The bit of emotional numbness that comes along with the current cocktail is somewhat helpful, in truth. I work to keep the world from affecting me, because I don’t have the energy to deal with the emotions that it might engender.
***
I wish I could say that there were a set of Great Truths I’ve learned over the past decade. After all, that’s what our culture thinks we get out of dramatic, life-changing illnesses – turned into a minor-league Dalai Lama. I could tell you all the ways I’ve adapted, or the things I appreciate more than I did – I have in the past, and maybe I will on some other occasion. But those are just things I’ve been forced to do. If you’ve gone through a personal trial – and all of us will, sooner or later, probably more than once – you’ve done some of them too. It doesn’t make me any more noble or wise than the rest of humanity. In truth, my fragility has made me more selfish and fatalism has made me more cynical.
The Great Truth, in the end, is that this sucks and it’s unfair, it’s eaten ten years of my life, the brief span of existence I’ve been granted is largely going to waste, there are no miracles on the horizon, it’s likely to suck to a greater degree for me again in the future, it’s making a lot of other people’s lives suck too – more of them, each and every day – and we need to do a lot more about it.
No Poster Girl 
I hope you might find this interesting and moving …
I am so sorry. I love you.
Thanks for the love, Amy, and likewise – it’s much appreciated.
Joc, I am so sorry about all of this. You and Michael deserve better. I hope you know how much joy you add to the world, even if our contact is mostly through F’bk, etc. Love to you both, Mgt.
Thank you, Margaret. I do wish things were better, but I suppose I don’t think the world owes us it – it would be nice if it were of your opinion!
Love this post. I find it so refreshing to read real perspectives and experiences of what it is like to have CFS/ME. I too, like you and everyone else I know with CFS were sooo sure they would get well because, well, we worked so hard at everything. We are sold false stories and ideas about health and our control over it, but the reality is, we are just biological creatures subject to random illness and death just like every other life form on this planet. Most is out of our control.
One thing I would tell you though, is that you should be immensely proud of yourself. I promise you, you have done much more and showed much more strength, tenacity, creativity and perseverance than any of your healthy peers have. You have accomplished much more than they ever will in their life time, unless they go through something utterly horrific and long lasting like you have. I’ve been sick and I’ve been healthy, being healthy was a cake walk. Nothing I did or accomplished even touches how hard I work on just surviving now. We must remind ourselves of this all the time i think. And it’s normal to mourn our lives and to have sad feelings about our situation at times. Well, my brain isn’t great today. I just loved your post and wanted to say “Hi” and I relate. The first ten years were the hardest. Once I accepted the idea that I might never get better (which probably took close to 15 years to take in) my life actually got alot better. There is a peace in accepting reality and seeing all those false silly stories people relate to you are usually just a reflection of their own fears about illness and mortality. Keep on writing. It’s great. It’s wonderful to help keep a very marginalized part of society connected and helps give us a feeling we are not alone and that we matter. I got sick just before I turned 25. I’m now 45. I’m still here, I am still smiling and I still feel losses too. Thank you for your post.
Very wise, Bunny. My acceptance comes and goes – some days I’m okay (I wouldn’t say “fine with it”) and some days it is a big unhealed wound.
I hear you. I shake my fist at Heaven on your behalf. I grieve for what you could have done. I stand and marvel at what it takes from you to persist in the face of ME.
Thank you, Mom. One thing it has given me…I no longer have any worry about all those “needs improvement” ratings I got on early report cards. Improvement is not mostly up to me these days!
Your post says it all…thank you for writing an accurate description of what my life too is mostly like but have lost the ability to articulate. I long for change for the better for us all. xx
Thank you, Anne. I’m sorry to hear you’re suffering too, and with communication difficulties on top.
It sucks. It really really does..•*♥*•.
It does! Thank you for concurring, Willo.
It sucks. It really really does. ༺♥༻
…worse things happen at sea…I tell myself when all I can do is purse my lips and whistle:)
ps Sorry for the double entry. Blowed if I know what I am doing with this googleplus/wordpress business.
Ha ha! Yep, this one comes in handy, doesn’t it?
I beg your pardon
….https://www.youtube.com/watch?v=RZjkR14ppBI&list=UUE3E-d8dUieqIbKYIO5-pFg&feature=share. This is the link I wanted to send you ….
Thanks for the link, Ingrid. Unfortunately, video is really tough for me – I can’t manage an hour. 😦
That’s ok Jocelyn. Really wishing you well.
Warmest regards, Ingrid
I really really recommend a book by Ingrid Bacchi,
Living Life Effortlessly …
Couldn’t see how to delete previous link, sorry!
Here is what I won’t say:
“But you do still write so well! And with great insight.”
(It is true, but I still won’t say it.)
And I sure won’t say:
“Namaste. Breathe. Be in the now. Pray, etc., etc.”
And if I ever said something like the following, please banish me to a cold dark planet:
“Can you turn it to a positive?”
(I made a post recently in a small FB support group about how scared I was that my cognitive function had degraded past my coping with it at all. And someone actually told me to try to look at positive aspects. I swear she did. Good thing I did not have a shotgun that worked in cyber-space or I would be writing this from death row.)
So there are lots of things I might say, but only one I will, and that is because someone left this thought with me shortly before she died last November. This was a friend I had lost touch with when all of a sudden her beautiful face showed up on FB, wearing an oxygen canula.
I wrote to her to say hello, and she told me what had become of her. She had been brutally assaulted 15 years previously and, remarkably, she survived it. Sort of. She was host to a series of strokes, etc. Fairly immobilized, except she could write. She was fully dependent on full time care for every bodily function.
I told her what had become of me and she went straight to work learning about the illness. She was so kind to me and so angry that such a severe illness had taken me down. She and I became close. I grew to depend on writing to her, hearing from her, sharing things on FB that I knew she liked, and she was always so grateful and happy to hear from me. One day she said to me: “Just promise me that you will do all you can to remember that the world is a better place because you are in it.”
A few months after we had renewed our friendship from this vantage point, she had another stroke and was gone. In a flash. Just like that.
I still am not over it. Actually, I don’t think I ever “get over” any of my losses, and there have been plenty. I don’t think anyone really does, but then again, I am not “anyone.” I am just me. And I don’t take my losses lightly.
Lately, it has been very hard, as my mind is slipping in new ways…and the other day I was frantically thinking: “What would this friend say if she were still around to help me cope with this very unbearable sensation. She had been through so much more than this — what would she say!”
And finally I remembered again what she must have told herself countless times since her life was cut down by “the animals” who assaulted her: “The world is a better place because I am in it.”
So I won’t say all those other things to you. But I will say to you this one sure thing that I know, and that I WILL say — from the rooftops: “Jocelyn, the world is a better place because you are in it.”
That doesn’t take your suffering away, nor does it take mine away. Nor does it snatch meaning out of tragedy like a magician snatches a bunny from his top hat. But it is true. So that is what I will say.
Wonderful comment, thank you. helped me today. I will try to remember that statement and repeat to myself also: “The world is a better place because you and I are in it.” Wonderful. And I really feel for you with the people who are obsessed with being positive. Now, I am all for making the most of our lives and being grateful and celebrating life, but to be falsely positive actually makes people much more depressed and isolated.
Thank you from the bottom of my heart, Libby. That was wonderful.
I wish you well.
I am primary carer to my wife. She has been bed-bound with CFS/ME for 5 years now. When we met, I knew I was smart. She was even smarter. It has pained me to see some of her intellect be taken by the disease. To see what even the smallest thing takes out of her.
Well meaning people have also said stupid things to her too. We’ve learnt to ignore them, mostly. We get through life one day at a time.
Yet she still has a smile that can light up a room, and we love each other very much. While I might wish some things were different, there’s nowhere else in the world I’d rather be.
Sorry if I’ve hijacked this thread to say “I” alot.
I wish you well.
That was absolutely fine, Steve. I write these hoping they’ll connect with the human experience. I’m sorry to hear your wife is suffering too – thank you for caring for her. I know even if you adore the person, it’s not easy.
Thank you for this beautiful, candid post. And thank Libby Boone, too. I can’t say it any better. X
And thank you, Elizabeth, for coming by to read and say hello.
I agree with Bunny, you have accomplished far more than your healthy peers have.
Whether your health lets you continue you blog or not, you have done something meaningful and worthwhile. I started a window basket plant because of you. I have grown 1 basil plant and am now on 1 beetroot.
I decided to go to see an expert on low blood pressure tomorrow. I am only going in order to get the diagnosis of NMH because I am sick of doctors telling me that I have nothing and just should exercise…
I think you are a very brave person. I wish more healthy ppl could see our suffering.
Thank you for that, Rachel. Sounds like you are doing a great job of starting where you are – I hope the doctor’s visit was productive for you. I’ve been thinking about some indoor plants myself, since I haven’t been able to tend the garden. Just have to keep them away from the cats!
Thank you for telling the truth Jocelyn. It concerns me deeply the pressure placed on people with invisible illness to pretend that what is so, is not. We have enough to deal with without having to accomodate other peoples need not to be troubled by our illnesses. Your blog posts have often moved and inspired me. Thank you. The world is indeed a better place because you are in it.
And thank you so very much, Tracy. I tend to just withdraw when things are bad…it’s hard to come out with it.
Your writing is always interesting and insightful. I wish I could say something profound or helpful or both but it’d just come out as trite. But perhaps just as we need to learn not to fight, to rail against the Illness so we must also with the feelings that come with it. Hugs. 🙂
Being at peace is a constant battle. I suppose that’s funny, isn’t it? Thanks, as always, IE; I know you understand.
This post was so brilliant. I can barely express how deeply and personally it touched me. I can relate to so much of this, and I truly appreciate the fact you shared.
You ARE a very insightful writer. You have eloquently expressed things that I think all the time, But can’t seem to articulate, Even though I am still out in the working world (Seven hours a week- Not enough to pay the bills of course) And wondering how long I will be able to keep it up. I got sick at around age 40, And even though it seems older, I was just beginning to get focused on my life’s work.
There are many days that I do feel hopeful, But almost just as many that I don’t. Thank you for keeping it real!
Beautifully written post. I’ve had ME for 20 years now – became sick in my mid twenties and now in my mid forties. I can relate to everything you’ve said, particularly about the world moving on and being left behind. I don’t do the “positive thinking” thing either and want to stab people who go on about all the blessings their illness has brought them – usually they’re poeple who are only mildly ill or have only been ill for a short time, we’ll see how they feel about not having a life in 20 years!
You absolutely do get blammed for not getting better, which makes you retreat from people. I was bedridden for 10 years and luckily *did* manage to make a degree of improvement (still sick as a dog but no longer bedridden or housebound) but not from some magic therapy or pill or not eating gluten! People mean well when telling you about someone who’ve recovered using x, y or z but it drives me crazy.
I find I don’t talk to people much these days because my life is so limited I feel I have nothing worthy to say. Don’t work or have kids so feel I have no conversation. There is nothing remotely positive about being this sick for this long.
Just wanted to say I hear you. Jak x
Bertie, thank you for weighing in on this! I feel much better knowing another person out there thinks similarly to me. It’s very comforting!
This is like having a bunch of my favourite ladies in one room, talking. 🙂
To Christine & Elizabeth: 🙂
Like the others have said, right there with ya too! For 20 years people have found ways to put me down due to being ill even some people in “support” groups. I often find that others who are mildly sick, have a less limiting disease or have sort of cult like attitudes about alternative medicine will just attack others who are sicker or not getting well. It’s really terrible. I’m such a social person but when you have people put you down or attack you for just being sick, it gets to be too much.
Much appreciated, Bunny. Yes, tribalism gets even to us sometimes, people who really shouldn’t be wasting energy on it. I think because there are so few thoroughly studied, objectively effective treatments, people can get very invested in whatever is their “thing” – treatment or level of illness – and defensive. I fight against it myself, not always successfully.
Thanks, Bertie! I hear you. Thanks for the voice from a veteran. Glad to hear you’ve had some improvement.
I am so glad you feel safe in this space to say these things, the way you feel, the way you aren’t coping. I needed to read this today, to remind me that I am not alone (though I know I’m very slowly improving so not sure I can lump myself in with your current situation). Having a chronic illness sucks, and the need to be positive and show how much we’ve learned from our suffering every single day, also sucks.
Really, all I’m trying to say is thank you for being our voice, and for believing in yourself enough to write the truth.
And thank you for doing the same, Tamara. You’re a phenomenal voice for us as well, and it’s certainly not a “who’s sickest” competition. It sucks at whatever level one is affected. I’m glad to hear you’re slowly improving.
yay! thanks for keeping it REAL!
Thanks, Malka! Welcome to the blog.
I could relate to so much of this. Thinking of you, Jocelyn. xo
Sorry of course that you could, but thank you, Laurel.
I love you, Joc. It sucks, it sucks so hard, and all of us who think we know what you (and others) are experiencing can honestly understand only a fraction of your pain, frustration, and heartbreak, so thank you for writing about it. For as much as you think your writing has suffered, you still convey what you are going through brilliantly. I love you. I know I said it already, but I really, really do.
And I love you, Hortense. Having you around to play WWF with and exchange a line or two here and there really brightens my days.
Hi Jocelyn. I have tears in my eyes after reading this. Despite your illness and all the obstacles you have overcome you have continually found the time to help others in your writings. I have not had CSF for very long and your advice for the newly diagnosed has helped me in so many ways. You have a way with words that I can really connect with. I want to thank you for that and I send big hugz and positive energy in the hope that you recover to some degree which you really deserve.
I am so, so grateful that the blog has helped some, Philip. That is why I began it in the first place. Thanks for the hugs – right back at you.
Your writing is beautiful and helps others of us suffering with this darn disease. It puts together very cohesively how it feels to go through dealing with this illness every day. You articulate
the frustration and disappointment we go through very well, and we relate to your writing.
As far as anyone’s aunt’s sister, just do not listen to her or anyone else. You know how
you feel and you know that you are doing what you think you should do and what you can do.
I’m very sorry to read that you can’t walk in your garden. I hope for your sake that
you will be able to do so. I hope you can sit on your deck and look at its beautiful
flowers and plants.
I try to do what I can, but my life is nearly all at home, me, my computer, my TV, my
books, a few calls here and there. And there are wonderful neighbors and their
children and pets who perk things up around here.
I haven’t been reading fiction lately and hope it’s not my illness. It’s really a
strain to read and makes my eyes tired quickly. But I don’t want to lose that.
I started to make improvements in my apartment in March, did a few things,
but have lost the zeal for that, and the energy.
And as far as the “illness as a life lesson,” or any of the other so-called
positive spins on illness, a relative of mine who is a two-time survivor of
cancer disdains all of this, and could have lived very well without it.
I think you make a wonderful contribution to this planet with your blog and
Facebook, your excellent writing and articulation of living with this disease.
Thank you, Kathy. Very kind of you. Sorry to hear you’re having a tough time reading – hope it proves to be just one of those spells that comes and goes and not a permanent change.
You are my hero! You articulate so beautiful. You have know idea how helpful it was to read this today. I and many relate to each and every word! Thank you and to all above commenting, truly only we know how we are doing. I miss my health to a point of extreme frustration but sincerely appreciate you more than I can say.
Thank you, Gina B! I’m glad it was helpful.
Hey,thanks for this. I’ve been dealing with chronic Lyme disease for 3-4 years undiagnosed and now 3 years in treatment. It does suck. And that is the Great Truth. At first, I was glad to have this diagnosis. Then I realized that there isn’t a set treatment protocol and chronic Lyme is politicized. The reality is that there is no cure, not enough research happening, tons of misinformation out there, and more and more people are contracting it every day. Here’s to wishing the Great Truth can maybe suck a little less.
Hear, hear. Thank *you* for the kind words.
I’ve toyed with a blog for so long. I’m 25 years in… 47, it’s hard to recognize that. I’ve been at every level from in bed unable to speak…. To working and labeling myself ‘basically in remission’. I was doing well, then tried some ‘this is IT hugely expensive, potentially miraculous things. I wish I’d never gone there. Mainly, it’s my family that doesn’t understand and I don’t want to let them in.mplus, truth from me would mean some unsavory splatters. Or, I could avoid that. Somehow, writing is so intensely personal, I’ve found a way, one day at a time, to avoid it. Thank you… I, too, am due then for a (I can’t even write the word.mlets just say loooong whine!)
I have the best husband ever, I get to be the best support I can b, he’s struggling w a alcoholic relapse) have a business I run from bed as needed… And today, I’m ok. My greatest wish: the movers and shakers for medical research, funding and assistance… Spend a 24 day on my couch.
Thank you, again, for your generous share…
Christa
Thanks for a bit of an outlet,
Oh, Christa; my heart goes out to you. It’s so tough. Just keep doing the best you can when you can, and when you can’t, be kind to yourself. Sending you a big hug.
Thanks for this bllog post