A Thousand Things

Starting the assembly of breakfast, my quotidian victory.

If you’re a healthy person, how many things do you think you do per day?

Your to-do list at work might have a half-dozen things on it, but I’m talking about more than that. Maybe you run a few errands after work and do some housework when you get home, and you think that brings it up to an even dozen?

What if I told you you do a thousand things per day?

I say that to demonstrate my perspective as someone with ME/CFS. The difference between what you can manage and what I can manage is enormous, and it’s likely that you and I see our possible energy expenditures in an entirely different way. Those thousand things include actions you never think of, things you’re hardly aware of – things that you would never think of as taking energy, because to you they take such a negligible amount. But they would would be enormous against my tiny supply.

And in comparison, how many things would you guess I do? Well, I’d say I’m up to a hundred now, maybe more depending on the day, but at my sickest, I’ve gotten down to as few as a dozen.

A dozen things a day is totally bedridden, unable to get out of bed and walk across the room. To get a bath, I had to be wheeled the twelve or fifteen feet from my bed to the bathtub. My computer sat on a table next to the bed, but my ability to use it was limited to reading about one email a day. No typing. No facebook. Most of my energy went into eating my meals, which were brought to me in bed by my mom on a tray, and to picking up my water glass and sipping from a straw when I was thirsty. Turning over from one side to the other counted as one of my dozen actions. I could only manage to change my clothes once every four days. I couldn’t stretch my muscles – the sort of thing you usually do a few times a day – because it ate too much energy, preventing me from having enough for other things I needed to do. My sense of humor disappeared, at least to my caretakers – I could barely speak, and I couldn’t afford to waste the few precious words I could manage per day on making jokes. I also had to consistently suppress the urge to laugh, because it too took too much out of me.

I spent more than a year like this, from Christmas of 2007 to the spring of 2009, and there are many, many ME/CFS patients in that state. These days, I do more things before breakfast than I was able to do in a week back then, and basically each of them are things I was completely unable to do then at all.

By illustration, a typical morning of late: On waking, I change into the clothes I set next to my pillow the night before, pull up my covers, making my bed lying in it, fold up my extra blanket, go across the room to pick up the decorative pillows and back to put them on the bed. I walk to the bathroom, wash my face, get out a towel and face cream, dry off, put the cream on, and put the towel and cream away. I fold my bath towels, which were drying overnight. From there, I go to the kitchen, get out a bowl, a spoon, measuring spoons, cutting board, the canister of muesli, my pills, a pear, a hot pad, the carton of soymilk, and a pre-measured syringe of B12. I put muesli and water in the bowl, sit at the table to cut up the pear, then place the bowl in the microwave and start it. I put the pear core the in trash, the utensils in the dishwasher, and sit down to wait for my breakfast to cook. I take the muesli out of the microwave, pour soymilk into it, put the soymilk away, and carry the muesli and my pills to my dayroom.

That, in case you weren’t counting, was 34 things. And that’s about a third of my energy expenditure for the day right there.

I can do a lot more now than I could a few years ago, but I still have to watch myself very carefully. But this, honestly, is a large part of why I manage to be happy, as sick as I am. When I was limited to a dozen things a day, my dream was simply to be able to read on the computer all day in order to fill my time, so I didn’t have to lie in bed doing nothing but staring at the same walls every day. Anything that I can do beyond that reading feels like gravy. Being able to walk to the bathroom, to heat up a meal, to have a little conversation, just to be able to get up and leave the room if I want to – all of this is a dream that I never thought would come true.

But while I’m doing better now, figuring what I can manage, and staying what is called “inside the envelope” is still a constant struggle. I mentioned above that there are things that a healthy person doesn’t even think of as taking energy that in my case would count toward my number of things. In terms of staying inside the envelope, it’s not just obvious physical activity I have to beware of.

Avoiding these other, less-obvious energy-drainers is key, and we’ve adapted my environment so as much as possible, I’m not burning what I don’t have to spare. But those adaptations are largely not available and even more, not understood in the outside world – even in, say, doctors’ offices – and that, on top of my energy level, keeps me inside the four walls of my house.

Some of the things that I have to beware of are:

“Minor” physical exertion – Staying upright, for most people, is just a normal part of their day. My heart won’t pump enough blood to allow me to, so I lie down about 98% of the time. If you have a conversation with me, you might notice a preternatural stillness, because to fidget, or to talk with my hands, takes energy. I read almost entirely online, because to hold a book and do the repetitive motion of turning pages is too much effort. For the same reason, I have to carefully watch how long I pet my cats. When I go to bed at night lying on my side, I prop myself with pillows fore and aft, so my body doesn’t have to use muscle power – and energy – to keep me in position.

Sound – There are several components to this. Normal sounds now seem about three times as loud as they actually are, so when someone new steps into our house and starts out at a normal conversational tone, before Chimp gets a chance to tell them to speak quietly, it sounds like they’re basically yelling at the top of their lungs. My brain does a poor job of blocking out extraneous noise, so a normal conversation in the next room, or the sound of kids playing outside, make my brain continually jump to attention and can wear me out very fast.

I also have an enormous music collection gathering dust, because the stimulation of music wears me out even faster than does conversation. I can listen to a song or two a day, on good days. For the same reason, audiobooks and podcasts, which are a life-saver for some ME/CFS patients, are so challenging as to be impossible for me, because with no visual cues, they require an enormous amount of processing power to understand – cognitive abilities that I just don’t have anymore. My tolerance for sound also depends somewhat on how I’m doing – if I’m having a good day, I can deal with more, and if I’m having a bad day much less. Some days the dishwasher going behind the kitchen door is no problem, and some days I have to put my earplugs in, or ask Chimp to run it after I go to bed.

Light – My photosensitivity has a couple dimensions too. Too much light flooding into my environment, like having the blinds of my dayroom more than halfway up, causes my eyes to sting and is tiring. Likewise, I have a terrible time with overhead lights – they feel very physically oppressive and sap my strength. I generally have to keep light sources behind me for the same reason, and fluorescents that obviously flicker are very bad news – I don’t get a headache; I just get tired.

Smells – I debate whether light or smells are the everyday thing that’s most problematic after sound. My sensitivity to both is amplified, so smells are much stronger to me than they seem to be to others. Light, generally, is at least adjustable – you can turn it off. There’s no turning smells off, so the only way for me to deal with them is to avoid them or get away from them. When I encounter any sort of scented product that I’m unaccustomed to, like body care products or household cleaners, it feels like the smell is repeatedly interrupting in my brain like noise does, and I can’t think straight as long as it’s present.

Physical pressure – I have closets full of treasured clothes, vintage and otherwise, that I never get to wear because I can no longer deal with the pressure of normal garments – they too are draining, because my body constantly uses energy sensing them, and because my body has to struggle against them to breathe. This, for those of you who’ve seen photos of me in the last five years, is why I’m always in pajama bottoms and a loose-fitting men’s v-neck t-shirt. The pajamas have to be knit, and soft, though, because woven is too binding, scratchy fabric causes the same sensing, and the elastic can’t be too close-fitting either. Thank goodness I don’t need a bra, because I can’t manage to wear one. I no longer wear contacts – only glasses – as having the lenses sitting on my eyes is a pressure problem. Wearing jewelry also falls under this heading – every month or two I get my wedding rings out, put them on and look at them a bit sadly.

Visual motion – The first time I noticed this really being an issue was relatively early on, when we were at a favorite restaurant in California that had high ceilings, with lights above the ceiling fans instead of below. The fans cast crazy whirling shadows all over the place, and I felt increasingly sick and then more and more worn out the longer I sat under them. Ceiling fans alone are now a problem for me, even on video. And video in general is a huge energy-eater, too. I can deal better with some things than others – something like a placid, quiet BBC program is more tolerable than anything with a lot of jump cuts, and I really have to beware anything flashy or blinky. I’ve never actually had a seizure, but things that flash make my brain feel very bad, very fast, and can be one of those hit-the-power-button-instead-of-trying-to-close-the-browser triggers.

Emotional stress – This is tough to even write about, because just thinking about the topics  that cause me emotional stress causes emotional stress! The main trouble is that, seemingly because I don’t have enough energy to evaluate and handle stressful situations normally, my system tends to react to it the only way it thinks it has left – by juicing me into fight-or-flight mode with a surge of adrenaline. (Good luck on both the “fight” and “flight” aspects, body.) I know it thinks it’s helping me to survive, but the minuscule items it reacts to in this way are pretty ridiculous. Reading an article containing a political opinion contrary to mine? Adrenaline! New comment on something I wrote, and who knows, we haven’t read all of it yet and it might turn out to be negative? Adrenaline! Remembering a past stressful event? Adrenaline! It’s a non-optimal response, to say the least – and those surges of adrenaline are difficult for my body to clear. I can easily end up hot and weak with my arms shaking, ruined for a couple hours, or more. For this reason, I try to avoid stress and conflict as much as I can, for example by hiding friends with contrary political opinions on facebook.

These difficulties didn’t become part of my life all at once. I got sick, and then a little more sick, and then a little less, and then more and more. Because they’re all normal for me at this point – just how my life is – they’re sort of invisible to me. I wanted to write them out like this because I suspect that many of my well readers, those who don’t know me personally or haven’t spent time with someone like me, might not have a good sense of just what that middle F in our much-hated three-letter acronym really means.

All that above? That’s what “fatigue” consists of. Those are the constraints I live with that I have to both remember to stay within for my physical health and try to forget about for my mental health. It really makes the f-word sound like an insult when you see it all laid out like that, doesn’t it? It’s not fatigue. I and people like me are dealing with constant, debilitating exhaustion that affects every bodily sense, every decision, every moment of our day.

Fellow ME/CFS patients, I really want to hear from you here. Would you please take a few of your number of things, if you have them to spare, and tell me about some of your personal constraints?

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71 Responses to A Thousand Things

  1. Lee Davis says:

    Hey Jocelyn,
    Exciting music is definitely one of those constraints that I don’t hear much about. I was such a fan of soaring glam-rock, and I could never get enough of Englishmen with synthesizers. It took me a while to realize that every time I listened to it, my adrenaline would go wild and then crash. Rhythmic music makes me want to dance and have sex, things that aren’t going to happen anytime soon, which makes me feel SAD and ANGRY. My solution: Brian Eno. Not glam-Eno, Ambient-Eno. Ambient 1, 2, 3, and 4. It’s the strangest, most soothing, least rhythmic music I’ve ever heard, and it makes me think about Brian Eno, composing music with aleatoric tarot cards, which makes me feel HAPPY and FORGIVING. Maybe you would like it, too.
    Take care,

    • Yocheved says:

      That’s awesome! I have a Brian Eno ringtone on my phone, because I realized that the sound of my cell phone was freaking me out. It was so insistent and demanding, and changing the tone has made a world of difference in my attitude about callers.

      • Jocelyn says:

        That’s excellent insight, Yocheved. I can hardly ever use the phone at all, and it definitely makes me jump when it goes off. Maybe I should look for another ringtone.

    • Jocelyn says:

      Lee, I’ve had trouble handling caffeine from about age 18 or so, so loud music used to be my coffee on the way to work. 🙂 I would crank up the music and sing along – singing being just one more of those things that I’ve lost along the way. There is some of that Eno in our collection, as a pair who grew up U2 fans and because Chimp likes nothing better than the weird in music. So I know whereof you speak. I can see how it would be easier to manage than glam rock. For me, when I have the energy to listen to music, I usually pick out something that’s already a familiar favorite, because that seems to be easier on my brain, probably because it requires less processing.

  2. CBlondie says:

    I have only just discovered your blog, and I just wanted to tell you how wonderful I think it is. This post in particular I really liked to read, as I am currently laying down after being silly and deciding that the shower floor needed a scrub while I was sitting there having a wash this morning… and now the rest of my few plans for the day are looking to be very very difficult. It is very frustrating to try and get things done when you then can’t do anything else! You are very lucky to have such a wonderful caring husband to help care for you.

    As for little things which I tend to struggle with the most they would be brushing my hair (I used to have lovely long hair, but now I have to keep it much shorter so I can manage, and even them some days it’s not worth the energy) and some housework jobs, like making the bed (I am very grateful for my mother in that case). I should also point out that I am still currently doing my best to manage working part time as well, which I am doing my best to limit so that I don’t have to stop completely, but it does leave me very flat on my days off. I am really hoping to get my mortgage paid off in the next couple of years, so that I can drop working almost completely.

    Anyway, thankyou again for such a wonderful post, and I hope that you have a good energy day today 🙂

    • Jocelyn says:

      Welcome, CBlondie, and thank you for taking the time to say hello! It’s so interesting that you cut your hair off – I always wore mine short, shoulder-length and above, sometimes almost pixie-length, even, but I eventually didn’t have enough energy to go get it cut or style it, and so it’s become easier to let it grow, because I can just wrap it up in a bun and forget about it. While Chimp isn’t happy I’m ill, of course, he likes it long, though he never pressured me to wear it so…now mine is finally farther down my back than his is!

      • cblondie says:

        It is always interesting what different things help different people! It definitely shows that we are all different despite our diagnosis (I am not a fan of being stuck in a box by people who think otherwise!). In my case cutting was the better option as on top of the fatigue making it difficult to manage, painful shoulders also limited how far I could brush down my back to get it neat. Thankfully we have a no appointment necessary hair dresser at the mall I use, so I don’t have to worry about going out of my way, or missing appointments, I just stop in occasionally when I have the time and energy on my way to get the groceries 🙂

      • Ash says:

        I cut my hair, too, Jocelyn. It was down to my butt, or at least lower back, for most of my adult years. But showering is *so* hard, even with the assistance of a shower stool… it will wipe me out for the whole day, and intensifies my back pain. One day, shortly after I started the Valcyte, which led to some almost manic episodes in the first 1 or 2 months (my LLMD said from viral die-off), I just took the scissors to it, and it’s been just past the tops of my shoulders since. I figured if I was no longer able to keep it reasonably clean, there wasn’t any point in it being very long, so I’ve kept it that way. I just cut it myself periodically, with help from my daughter, a very simple cut. It’s just easier for me to deal with.

      • Yocheved says:

        My hair was down past my butt, too. I finally got up the nerve to have a friend’s daughter come over and chop it to above my shoulders. While I missed the vanity of my “amazing hair”, it reduced my migraines by almost 80%! I also had no idea how much I was stressing out my shoulders just by trying to keep it halfway decent looking. Now, three swipes with a hairbrush and I’m done for the day.

  3. SOUND is my big no-no. I became hard of hearing over the years (and I have many of them, giggle giggle), and I had to get hearing aids! Think I wear them much?

    Your clarity is astonishing. I know this must have taken many spoons to write, so I wish you knives to cut through it.

    • Jocelyn says:

      Kathryn, I don’t envy you the need for them, but there are times it would be really handy to turn the sound down! And the only reason this, or anything I write, is clear is because I write, write, write over time and then spend a week trying to edit down to stitch my train of thought together in a way that vaguely makes sense. I used to be able to just bang clear writing out on the first go-round…not so nowadays.

  4. Sharon says:

    I remember how your look lead me to understand the absurdity of my statement, “I’m too tired to make dinner so we’ll go out to eat.” My tired was very different than planning how long to wait for a drink of water or when to expend the energy to move in bed.

    • Jocelyn says:

      I remember that when you said that I was remembering the last time Chimp and I had managed to go out to eat…we went to that Indian place across the street from River Park in Fresno for our anniversary, in 2007, I guess. We both ate pretty quickly because we needed to get me home, and our server was worried we hadn’t liked the food because of how fast we finished. I didn’t explain.

  5. Yours truly says:

    I relate to most of what you described, although I am much better than I was a couple years ago. But I still have to be careful. When I’m having a bad day, just petting a cat can be very tiring. I also find bright lights, sounds and smells to be overwhelming. And it doesn’t help that I live above a VERY noisy family whose food smells constantly fill my apt. Needless to say, I wear earplugs for most of my waking hours when they are home… but I can’t plug my nose! ha! And any type of stress trigger can make me start to shake. Then I have to lie down to recover from the exhaustion that follows.
    I wish the illness had a different name, because people really don’t understand when they hear Chronic Fatigue. It’s such a misnomer!!! I’m glad you mentioned the cognitive aspect, and you said it so well when you described your brain’s lack of processing power. I have major language problems often… can’t find my words, can’t spell, can’t understand what I’m reading. It’s awful. You write and express yourself very well though… I was very happy to read in this post that you are doing better. I hope you continue to improve.
    Good luck!

    • Jocelyn says:

      My sympathies on the neighbors, Yours Truly. We lived in an apartment complex in California, and with the way I am now, I can’t imagine being able to deal with that. It is just stressful to be worried that others will cause you stress!

      I have real language issues too…used to have a great vocabulary, used to be an excellent editor for whom errors would just pop out, and now I can’t see obvious spelling mistakes and have a terrible time with aphasia. In fact, I just tried to remember the word aphasia and couldn’t. Perfect example right there! The blog looks better than my day-to-day abilities are in this regard because I do *a lot* of polishing.

      • Yours truly says:

        Thank you, it’s nice to be understood. I appreciate the energy it took you to respond. You know, it’s funny that you responded just now, because I had thought of you, wishing that I had mentioned something about goitrogenics. I was going to come back and leave another comment. I hope you don’t mind… perhaps it could benefit other sufferers as well. In my experience, even though my TSH (thyroid hormones) test normal, I find that I feel worse when I eat foods known to be goitrogenic, such as some of the things you mentioned in your post including soy and pears. The list also includes spinach, peanuts, broccoli, cauliflower, peaches, and more. I find they exacerbate symptoms such as intolerance of noises, bright lights, brain fog and the list goes on… It might be interesting to experiment. If you do, I’d love to hear about whether or not it helps… Take care.

  6. ixchelkali says:

    This is such a good description of the way we count energy, and the ways our senses over-react to stimulation. Thank you. I’ve been fortunate that mine are not as severe as yours. The issues are the same, but to a lesser degree.

    Other things that sap my energy are: trying to remember something, like an appointment. Using my brain to make a decision, write a check, add two numbers. Grocery stores are difficult because there’s so much visual noise, so many colors. Changes in the weather: hot weather, cold weather, barometer rising or falling. Carrying on a conversation: it goes too fast, e-mail is easier. Pain. Pain takes energy. Bending over. Raising my arms over my shoulders.

    • Jocelyn says:

      I can identify with all of that, ixchelkali. Anything that uses processing power makes the front of my brain heat up. It’s quite a peculiar sensation, like the wires are red-hot in there. Email is definitely easier, I agree…no need to think on one’s feet. And yes, pain takes so much energy.

  7. priya says:

    thanks for the great piece! i’m sure it will go a long way to help others understand how we function along with all the comments attached… at my worst, i could do 4 things: breathe, have liquid food poured down my throat, swallow and have my paralyzed body thrown onto the commode. opening my eyes to look at the blank wall over-stimulated me and caused crashes. hearing a few words caused seizures. carers could wash me once a week and change my top (i only wore tops; bottoms were impossible) once a month. bed sheets were changed about 3-4 times in 8 months. i couldn’t count my heart-rate or put two words together in my mind… now after 8 years i can read again, use the computer, wash my own hair sometimes (in bed), feed myself, chew some normal-ish food and i’m no longer paralyzed. i can talk (sometimes) and my brain is doing much better. my biggest constraint-complaint now is if i exert even the slightest amount of extra pressure with my finger to turn on the mac, or move my tongue too far inside my mouth, or say a word a little too loudly i lose the functioning of the muscle group involved, which spreads bilaterally and then to my brain and the rest of my body.

    • Jocelyn says:

      Priya, thank *you* so much for your comment. That must have taken some doing to write. It’s amazing that you’ve made as much progress as you have. Not a lot of people come back from those depths.

  8. janna hill says:

    I am excited for your accomplishments. Best wishes and hopes for you and bless you for giving many a voice.

  9. Danni says:

    I probably shouldn’t waste spoons replying to this but I’m awake and want to.

    I’m currently in a relapse. For me, that means I can’t roll over without help, can’t speak, can’t get out of bed at all (I have to use a bedpan and it’s really not easy, especially since I can’t be propped up with pillows). I’m completely unable to speak, but some of that is probably autism and the interaction. I’m unable to have my husband in the room for more than a few minutes, and understanding what he says verbally is a massive challenge. I can’t chew and swallowing liquids is a struggle, though I have a drink bottle with a tube that makes it a lot easier. I did have hypersomnia and couldn’t stay conscious for more than 2 hours at a time, but now my pain levels are so high they’re stopping me from sleeping. I’m so sensitive to noise that my husband dropping something in the other room caused my body to jerk uncontrollably.

    I’m lucky though. I can use my tablet with sunglasses on to read, and slowly type. I mostly use it for twitter and talking to my husband. I spend a lot of time just looking at pictures or my wallpaper on it. I have been worse than this before, and discovered that hospital, though it has painkillers that work and drips for when I can’t drink, the brightness means I’m unable to open my eyes with my sunglasses on which means I’m unable to communicate, and with the lights, noise, smells and activity going on it makes me more ill.

    My normal is better than this. I can normally go into the living room in my tilt in space wheelchair and go on my computer. Some days I can have a wash and get dressed if someone helps me. I still can’t stand for more than a couple of seconds or sit upright for more than a couple of minutes, or go outside, but it feels completely different to how I am now.

    I’m not really sure why I can use my tablet or computer while still not managing other, more basic things. Maybe it’s because I’m autistic and think in the written word. Or it could be because my muscles are so weak and spasm so much, but using gadgets doesn’t affect them as much. I tried not using my tablet and didn’t improve any so I’ll keep going as it’s a great distraction. (When I’ve been at my very worst I was completely unable to move or communicate, and even breathing was a struggle. I should have been in hospital then as I wasn’t drinking but my husband didn’t contact anyone and luckily the paralysis went after a couple of days.)

    One of my problems is I can’t write short things, so sorry for the essay. I hope you keep improving and stay as well as possible:-)

    • Jocelyn says:

      Danni, I’m astonished you managed to say as much as you did there. That was a lot. Thank you – and all so true. I know what you mean about the jerks when something is dropped – the reflexes are a real problem in that regard. When I’ve been more ill, just something being dropped in another room would be enough to freak my system out with adrenaline…very unwelcome.

      I wonder so much about why some of us have hypersomnia, like you, and some of us have crippling insomnia, like me. I would think it has something to do with which part of our brain the disease is eating, but who knows what the specifics are.

      I’m glad you have the tablet as a distraction, with so many things being so difficult. Looking at pictures is great for when it’s too hard to read. I have done that too.

      And I learned from hard experience that the ER is not a good place for an ME emergency. There really is no good place for an ME emergency. Before I got ill I thought the ER was for fixing bad problems, but now I understand it’s not at all like that. It’s for admitting you for certain well-understood acute issues, and if you don’t have those, you will mostly get a shrug and sent home.

  10. HomeleaLass says:

    Thank you. This post really struck a chord with me. How you describe what you can do in a day compared to a “normal” person is perfect. My big energy drainers are stress, having to think critically, bending down and reaching up. But I’m gradually seeing small improvements. And I’m grateful – I can manage this, I have a lovely quiet home in a rural setting and my husband is caring and supportive.

    • Jocelyn says:

      Huh, the bending and reaching was mentioned by ixchelkali too, HomeleaLass. I can see why that might be – it takes you right out of your normal zone of operation. I’m glad you’re improving and glad you have the support to help you do so.

  11. Yocheved says:

    I am always blown away by your posts, but this one really got to me. THANK YOU for taking your precious energy to write all of this out. I am truly amazed, and I will be sharing this with my incredibly healthy, strong as an ox husband, who really doesn’t get it at all.

    On my bad days, I wake up long enough to make sure my daughter is dressed and ready to get on the bus, and as soon as the bus leaves I go right back to sleep. I often don’t even get up with her, but just lie there and force myself to stay awake long enough to yell “Have a great day” as she bounces out the door.

    I set my alarm so that I will wake up when she gets home, so I can help with homework and make dinner. I’ll force myself to stay up long enough to hang in until her bedtime, and then I’ll crash too. Every shred of energy I have, I save for her needs first. My husband and I get any energy that’s left over, and leftovers are rare.

    I hate food, it takes too much energy to fix, never mind to eat and digest. I have to force myself to get some protein when my blood sugar drops, and that’s the only time I eat really. I have NO appetite at all.

    On good days, I’m almost normal, except that I have the millions of things that wear me down, like you said. I have to constantly watch my energy levels, they way a dieter counts calories. Good days are hard, because my husband thinks “I’m getting better” or “cured” or something. I keep telling him it’s a relapsing and remitting kind of illness, but I think he just refuses to believe it. I’m actually afraid to have a good day sometimes, because I know that everyone will expect me to be like that all the time, and I can’t handle the pressure to “be well”.

    On great days (maybe once or twice a year) I’ll feel so good that I’ll tackle a project like pulling weeds for a half an hour, and then end up in bed for a week. I don’t care, I treasure those days like nothing else. Just to feel the sun on my back, and the “pop!” of a weed pulling free is such an amazing thing to me these days. When the weeds get tall, I feel like they are mocking me.

    People often tell me “Oh, you could get an office job.” I have to explain to them that yes, I could get a job, work for one day, and in about 4 hours I’d be completely exhausted. In 6 hours I’d be nearly in tears, and by the end of that first day I’d need someone to carry me home. The second day, I’d sleep through the alarm, and be bed bound for at least two weeks, if not longer. So much for working an “easy job”.

    The other day I had someone tell me I was “Lucky” that I was on disability, and that “I got a good deal”, as if I had pulled some kind of scam. I told her I’d trade my illness for a 60 hour work week at a job I hated ANY DAY, but she didn’t believe me. I think that not being believed is the worst thing of all.

    • Jocelyn says:

      Thank you so much for the kind words, Yocheved. Not being believed is an enormous problem. When I write a post like this and get a slew of people describing their nearly-identical experience, it always makes me wonder how long we’ll have to deal with disbelief.

      It must be so challenging to put all of your energy into parenting, knowing full well how little you have. I think most parents put most of their energy into it, but they don’t have to worry quite so much about doing so.

      As for the office job comments, I think that’s a great illustration of the difference between how we know our energy works and how normal people think it goes. An office job, to them, is just sitting down, and they’re not counting any of the thousand things one does in a situation like that all day, not to mention the energy suck of job stress.

    • Anna says:

      I’m just tired from pregnancy and side effects of the blood pressure meds I’m on, and I can’t work an 8 hour desk job. I might be able to manage 4 hours without killing myself, but work didn’t offer that option.

      Compared to what you folks are going through, I’m healthy as a horse. And I know my condition is temporary, though it may take a while to recover even after the baby gets here. That makes it all easier to bear.

  12. Mia says:

    Thank you so much, Jocelyn, for making this invisible illness visible! Boy, do we need people to take us seriously!
    Bless you

  13. You describe it perfectly. Hang in there. 🙂

  14. Reblogged this on I Spy with My Idiosyncratic Eye … and commented:
    She might be No Poster Girl but Jocelyn describes just what fatigue really means for ME patients perfectly. I’m so grateful that I’m over my relatively wee bad patch and my heart goes out to those who are suffering so badly and for so long with a ME bad patch, it’s definitely not a pleasant experience.

  15. wildaisyfl says:

    Thank you, Jocelyn, for posting this. Your description makes it clear how people with severe M.E. live.

    My days are very much as you have described yours, but the scariest thing is that the symptoms are progressing, and I keep getting worse day by day. I keep discovering that I can no longer do simple things that I used to do.

    • Jocelyn says:

      I’m so sorry to hear that, Wildaisy. 😦 It is so hard and scary to deal with progression. I hope you’re able to reach a turnaround point, and very soon.

  16. inukshuk says:

    Thank you for your post which can help someone like me to relate to your illness. I cannot begin to understand how you – and the many commenters who have left a glimpse into their own lives here – must feel.

    I can however somehow relate by thinking back to a time when I got infected with pneumonia, and it got diagnosed fairly late. During the worst of that time, I was struck by how much effort simple things would require. I would wake up in the morning, go have some breakfast – and then promptly go back to bed, tired from eating a few slices of bread.

    To think that this experience would actually represent a very good day for most of you, really puts things in perspective. I can only admire and respect you for the way you handle your illness with such humanity.

    • Jocelyn says:

      Thank you, inukshuk, that’s very kind of you. Yes, that’s just what it’s like. On the one hand, we know how abnormal it is, but on the other hand, it’s become totally normal. As I mentioned above, it’s an odd balancing act to have to work – to get used to it and to still try to appreciate what we have left.

  17. kathy d. says:

    What a brilliant post! That you were able to describe every problem, your reactions, even count your steps in the morning is amazing. I got tired reading those steps. I’m lucky, I guess, that I live in a big city as I call a take-out place and have food delivered when I don’t have the energy to prepare food when I get up. Or else, as on days like this, when I’m completely exhausted, I just eat bread and cheese or similar things, where I don’t have to do anything.
    I did too much in the last four days, mostly on my computer, but I did errands nearby two days in a row. And then today I told a friend that I had to call FedEx for a pick-up, that I couldn’t walk 3 1/2 blocks to fax something. So I had to explain to a long-time friend what I’d never explained before, what this illness does.
    You hit the nail on the proverbial head about sound — one of my nemeses. Sounds wake me up, give me headaches. I can’t sleep with any noises around. I even get headaches from listening to wonderful music I love so I rarely do that. That is a loss.
    And you described flashing lights, fast-moving visuals, etc. This was so well described. I can’t deal with anything I come to on the Internet with flashing videos or lights or anything like that: instant headaches. When I watch dvd’s, I have to scroll ahead through fast-moving video clips.
    So, I get it. I’m not as severely limited as you are, but it’s enough that I can’t go out often, that I had to cancel a needed doctor’s appointment today as I couldn’t get there, that I ate bread all day, that I couldn’t go outside or read much. That’s something I hate: not being able to read as I love my newspapers and crime fiction.
    Anyway, the blog is great. I think I will print our this post and use it to explain to people how I react to many things you’ve listed here, and what many symptoms are like.
    I wish so much that there was real treatment and a cure in the pipeline for you and everyone with this very complicated and confusing disease.

    • Jocelyn says:

      Thanks as always for your kind words, Kathy. We’re all a bit different but a lot the same, aren’t we? Sound must be a toughie, living in an urban area like you do. I remember how used I got to sleeping with all the noise of the city outside the window when I was going to NYU. When I came home to Virginia, I would have trouble sleeping because it would be so quiet!

      Hope you will recover from the recent exertion as quickly as possible and feel ready to go out again soon. I’ve had to cancel doctor’s appointments too, and that’s always so frustrating…you spend weeks trying to psyche yourself up for it and then don’t have the relief of finally getting it over with!

  18. Inge says:

    Dear Jocelyn, how matter of fact and precise you describe our limitations which are so easily cast away by the f … word by people who don’t know what M.E. entails. Thank you for putting this into words. Certainly an article to show to a prospective carer and see what his/her reaction is!

    It is precisely the matter of fact acceptance of our limitations that helps us survive.

    The sensual overload of the ‘normal world’ needs practical solutions and everybody with M.E. has to find their own way in their specific environment.

    But for me the most important was to develop a shield for emotional challenges. It took me a long time (20 years) but it is now easier to ignore such challenges. This saves energy and adrenaline rush for the unexpected stuff that really needs attention and it is surprising how little really needs proper emotional attention. That does not mean that life is ‘boring’ or one is not caring by curbing emotional output. One can enjoy and endure things quietly, from a distance, like a slow flowing river, always in the knowledge that things come and go, come and go, nothing to be missed because they will come and go again to be dealt with when the time is right for them to be dealt with.

    • Jocelyn says:

      Inge, you hit the nail on the head there about the way you deal with emotional challenges. I’ve done some of the same. I had a t-shirt a decade or so ago, before I fell ill, that read “A little drama never hurt anybody.” It was sort of hilarious to me at the time…I wasn’t the worst example of the drama-filled type, but I was pretty intense and passionate, and enjoyed being that way. It’s not that I’m dispassionate now – I can still get riled up on occasion – but I’ve learned that doing so is going to eat at my energy stores, and that because I have so little, there are few things that are worth letting do that as compared to how many I used to think were so. Maybe most people become a little less idealistic and a little more pragmatic as they get older, but I think the illness has done more of that to me than life would have if I hadn’t fallen ill.

  19. Tanya Marlow says:

    As ever, you paint this so well, and in a way that makes me glad for the few hundred things I can do. Thank you for your words.

  20. Nat says:

    Oh Jocelyn, yes you paint the picture so well. Since starting the LDN at the end of April I have been able to add to the things I can do each day. I can go down the stairs and am not completely bed ridden anymore. I was really bad last year with very often needing to be spoon fed and washed and like you turning in bed was nearly impossible. I still can’t listen to music much, still can’t read a book and need my eyes closed in the car on the way to appointments. So my day now consists of usually staying upstairs in my house as going down takes too much energy, staying in my pyjamas in bed on most days, watching a couple lf TV shows on the laptop (TV too big and stereo sound too much), I have a fridge and microwave in my bedroom so I can be self-sufficient as much as possible. What makes this bareable is my amazing husband and daughter. With the very limited life I have I am still incredibly happy and am coping well. I have all the magic numbers used in the Montoya Valcyte studies so am finally starting Valcyte after Christmas. I can’t wait!!! Thank you for describing our condition so well and counting the small things we do is not even noticed by a healthy person. I had a good month this summer where I got to go lay down in the shade outside and on some days even water the flowers!!!

    • Jocelyn says:

      Nat, that’s awesome! I’m so glad to hear that LDN has been so helpful for you. I think it’s made a difference for me, too. I’ve been on it for a year and eight months and have made some real progress in that time.

      I’m like you, I have to limit the size of the video I watch – it’s easier to watch it small on the laptop. It’s not so overwhelming that way. I’m glad you have some real happiness and I hope Valcyte will prove to be helpful to you too. Fingers crossed!

  21. Ash says:

    Jocelyn, this post is amazing, the way you so clearly bring home the way things are so very different for us, in every aspect of our lives. It was also scary to me to read, and I had to take a couple days to digest it emotionally. I am not as severely affected as you, but have been getting ever so slowly worse, losing things I can manage to do bit by bit, piece by piece, and I have to wonder where this is headed and just how much I can stand to lose.

    I can still leave home, usually not more than once a week. I have to as I am the one with the drivers license, so I drive us to the grocery store, the pharmacy, the doctor. But I usually wait in te car while Rhiannon shops.

    I can’t go in any store for long – the lights are always too bright, even with my sunglasses on, the sounds too loud, and the motion of people moving around wears me out so very fast. I’m easily overwhelmed by it all, by just a few minutes in the grocery store, as I notice everything that everyone else doesn’t – the beeping sounds of cash registers, the carts’ wheels squeaking, voices over the loudspeaker, the scents of cleaning fluids used on the floors or being sold, the perfume of a fellow shopper.

    My brain begins to shut down fast under such an assault of stimulation. I stop being able to make simple decisions about what I want to eat, and can no longer calculate what is a good deal. I stop responding to Rhiannon’s questions, instead, staring at her in blank incomprehension.

    Rhiannon knows the look, and steers me out of the store. She says it’s like herding cats in Ikea. I am drawn to new items with a childlike sense of wonder, want to feel soft fabrics if we are in Target, and go this way & that. She sends me to the car, where I close my eyes and rest, so I can manage the drive home.

    I miss reading. I used to lose myself in good fantasy novels, inhaling them like others inhale air. But years ago I lost the ability to retain anything; the short term memory loss many of us suffer. I can’t remember plot lines or charachters (or, often, how to spell common words).

    I can’t remember many things that have happened since I became sick. Sometimes I can recall things if I am reminded, but mostly there are just blank gaps. Rhiannon is nearly 18, and I feel like I’ve lost the memory of her childhood, and that is a great loss, indeed.

    The migraines are the worst, triggered by any change in air pressure, hormones, bright or flasking lights, odors, loud sounds. The ringing in my ears is constant.

    The list goes on… and on.
    Thank you for writing this, for explaining all the little things that people don’t associate with the f-word. It is so much more then fatigue. So, so, much more.
    *gentle hugs*

    • Jocelyn says:

      Oh, Ash, I’m so sorry you’re having losses. That’s so awful to hear. You are so lucky to have Rhiannon on your side. I know she’s probably shouldering a lot, but I’m so glad you are able to manage as much as you can together. I hope you can continue to find ways to make all that possible, or that you can negotiate some new ways that will fulfill your needs and ask less of you physically.

      The memory loss! I didn’t even touch on that in here. The memory loss is awful, and it hits all sorts of things people don’t think of, like the difficulty following plots and remembering characters. I have never been very good in the short-term – I was an ADD child, and mostly found ways to adapt to that, but since I’ve been sick, the short-term stuff has been worse and the long-term problems have compounded it. The amount of things I have no memory of that Chimp does is astonishing sometime. He’ll say, “You remember when we X…” and he’ll have it in full color with stereo sound, while I’ll only have a vague sense that maybe it sounds familiar, and I can never quite tell if it’s an actual memory or if I’m just suggestible enough to think it happened to me. It’s hard to even make sense of the memory loss, because how do you come to terms with something that isn’t there? I know it’s a problem, but I also know that I operate in a world where I cannot even begin to get my head around how much I’ve lost.

      • Barrie says:

        Thank you so much for your articulation of how this dreadful disease affects us. Your description of memory loss is exactly as I have experienced, but have just been to vague to fully grasp and to express so clearly. I’ve included it in a document I’ve created of sufferers descriptions of their experience of different aspects of the illness so I can let my family and friends read it to understand how profoundly affecting it is. Thanks again!

  22. Jen says:


    Thank you for such an incredibly powerful post. I’ve only had M.E. for coming up to four months, and do not have it as severely as you or others, but it’s still taken a toll on my life. I’ve been unable to work the entire time I’ve been ill, so that’s probably my #1 constraint – lack of salary.

    I also can’t really stand up/walk around much as it’s too tiring so these days I’m usually found sat on a sofa or sat up/lying in bed.

    I can’t do any household chores; I was able to do the dishes, but can’t do them at the moment as my hands have been very shaky the past few days.

    I used to be a voracious reader but haven’t held a paperback since I became ill, as I think that holding the book up would be too much effort. This is why I now stick to reading things online- also the heat of the laptop helps ease my knees when they ache. An unexpected bonus, you might say.

    I can still eat/talk/drink/move around etc… but I do find fidgeting (because I’m unable to get to sleep!) takes it out of me. Should probably train myself not to!

    I’m staying social but have discovered being in someone’s company for longer than 2+ hours leaves me feeling drained.

    Anyway, I’ve rambled on long enough. Apologies!

    Take care x

    • Jocelyn says:

      Jen, I’m so sorry to hear you’ve newly joined our numbers. It sounds like you’re doing a good job of finding adaptations that will work for you. I know it might not seem like it, but not being able to work is sort of a blessing in a way. If you’re sick enough to stop you working, you might have a shot at getting the sort of enforced rest that most of us long-term sickies didn’t get at the beginning for one reason or the other. So if you can stay in that state and rest as much as possible, that’s absolutely the best thing you can do for your long-term prospects. I hope it will yield real benefits for you.

  23. Michelle says:

    Wow! A really well-written post! Ash from Wolfdreams sent me to this post 🙂

    I think I need to write something like this for myself. It must be empowering to have clarity about what you can and can’t do. Thank you so much for sharing this with the world. I wish more family members or caregivers would read this, and posts like this one. My family would only get upset, and I don’t have a caretaker (though I must give my adult son credit for washing the dishes and for the meals he cooks). They would say “Well! What does she expect us to do? Come and take care of her!” My mom takes up for me, but my siblings have said all that ever needs to be said to tell what their view of “fatigue” is.

    I can’t do so much of what I used to do. I like a clean house, and organized stuff. This is one of the hardest things to accept, other than not having energy to dress up and go out, or shop for food, or even think of what to buy at the grocery. Going places is the hardest thing for me these days. If I take a shower, get dressed, well, often I have to go to bed afterward. That just sucks.

    I could go on, and on, I’m sure.

    Thanks again, and wishing you more and more good days!

    • Jocelyn says:

      Thanks for coming by and saying hello, Michelle! Welcome! I’m glad this struck a chord with you. I’m sorry you have some unsympathetic family members. So many do. I hope you can find the energy to put your thoughts down, and that it’ll be helpful to you – and maybe even someday to your siblings!

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  26. Meg says:

    I am always grateful for how much I can still do when I read your posts Joc, but there is a definite echo of your condition in what I experience. I still like music, in fact I turn on the radio or the tv most of the time in the background, so I don’t lose all sense of human contact since I have been home alone during the day. 🙂 However, I listen to classic pop hits, not hard or fast stuff. I caught myself bopping to Aerosmith on Mark’s speaker a few months ago, and it caused a brief crash from the exertion. I also can no longer sing, something I used to take much joy in both with my historical recreation group and while driving. Since the improvement over my initial months I can sometimes manage one song, but I have to choose a favorite, and even mouthing the words to more can be too much. I can talk in person for a while, but on the phone less. I believe people tend to put more emphasis into phone conversations, and more concentration with the lack of other communication cues as well (also leading to all the problems with driving), so it is harder for CFS/ME sufferers. I have always had a soft voice, but I notice even more people now who say they can’t hear me, or simply don’t realize I’m speaking at all. I want to recommend David & Steve Gordon’s Native American drum music to those looking for soothing stuff. I especially like “Sacred Earth Drums” and “Drum Medicine.” Don’t let the drum part fool you, these are soft rhythms, not fast rock stuff. Also includes flute, rattles, birdsong, and ocean sounds. I too avoid large concentrations of people, the mall for instance is much too overwhelming now. Loud or sudden sounds are bad, as are most smells. I can’t see well in low light (astigmatism), but the bright light has to be steady and I am more sensitive to the sun than I used to be. I can also no longer sleep when it’s light out, so I keep a soft sleep mask by my pillow, and if I wake before I’m ready, putting that on helps me go back to sleep. Somehow the mild touch resting on my eyes seems to cause the most bizarre dreams, though. 🙂 I will say I have had less issue with the horrific sudden adrenalin spikes since starting carvedilol (coreg). I am on the lowest dose since it also drops my already low blood pressure, but I definitely notice if I miss a dose. It is related to beta-blockers, and helps insulate my damaged heart from adrenalin by filling the receptors. Not working has also significantly reduced the stressors in my life. It was a big wrench to stop, but it has been the best thing for my health. I don’t have to lie down all the time, but when I sit up, I keep my feet up as well, usually crosslegged. This seems to allow my heart to strain less, and also I do sometimes get foot and ankle swelling if I have them down, because my heart can’t lift all the blood out well. Something I have liked recently is using a bath brush when I shower (which I mostly manage every other day) – it stimulates the blood flow to my skin and makes me feel more alive all over. I had to work up from lower legs to upper to back and now even some belly, and I understand some folks are too sensitive to try it at all, but if there is a chance to tolerate it, I recommend it. My temperature comfort zone has also become much more narrow. I never tolerated outdoor extremes well, but now they are crushing energy saps, and instead of varying the house temp by a few degrees between day and night, I now require it within one. I like hot showers, and I used to love hot tubs (jacuzzis), but while I can still do the former, the latter is pretty much right out. I did some reading about the issues heart murmur patients have with them, after a very negative experience the first time I happened to be in one after getting sick.
    I don’t have too much cognitive decline yet (that I can tell… 🙂 ), but I definitely have more trouble remembering words, and my decision-making is slowed. I tend to dither over choices when grocery shopping, or whether to get something not on my list. This gets much worse when I’m low on energy, and Mark has learned to recognize the signs and tell me what to do. For my part, I have learned to let him. 🙂 He has also learned not to take it personally when I shut down and simply stop responding, that it just means I can’t interact at the moment. He is loving and supportive and I am very lucky to have him in my life.
    I also have to remind myself to eat. While I still enjoy how food tastes, and certainly require nutritional input, I often don’t feel hunger or my stomach objects to the idea of food. So I drink a SlimFast (tastes the best to me, your brand may vary) pretty much every day, and this is my late breakfast/lunch. This way I still get some vitamins & minerals, protein & carbs for fuel, without overstressing my system. Then I have more of a real meal in the late afternoon/evening, off the shelf (or freezer) or actually cooked food, depending on how much energy I have left.
    For those who are still moving around, I love the Vibram FiveFingers shoes. They are basically gloves for your feet, with some protection on the sole. They are light and so take little energy to lift with every step, and they give me a lot more feedback about the ground I’m treading. They have helped me enormously to get around with the vertigo I still have, usually mild but sometimes strong. It seems to be entirely neurological (ie not inner ear), so if I can override what my brain is telling me with the input from the real senses of my feet and legs, I can stay upright better. They also improve my walking mechanics and are not uncomfortable to sit on when pulling my legs up in a chair. The only downside is that for a good fit, you really do have to try them on, as the pairs are not identical.
    Mostly I do pretty well with the energy budget now (three years in); I have gotten used to doing less and come to terms emotionally with most of the things I have given up, though I still often feel lazy or guilty when I spend the whole day in/on the bed. I do a lot of reading. I happen to have a Kindle, but to me the main difference is not holding it or the turning of pages, it’s that all my books are in my hand at once, and I never have to search for the next one. When I reach the end of my spoons, however, it can be very abrupt. Mark understands, but it is very difficult to explain to my friends why I have suddenly gone from hanging out with them to weeping. I still get out once a week most times for my reenactment group meetings in town, and occasionally farther on weekends. Friends who live distantly ask how I am, and my response is usually “ok” because I don’t want to explain my limits or sound like I’m whining. If they press, I’ll give a little more current status info, but for most I explain my heart valve malfunction rather than the CFS, because it’s easier to grasp objectively. I’m glad that Jocelyn is able to put so much of this in words, so that more people can understand what we experience.

  27. kathy d. says:

    What an amazing set of comments here. I must say that although it’s sometimes noisy, being in a city where I can have food delivered at all hours, medications and assorted personal sundries brought to my house is a boon. If I didn’t have this set-up, I’d be in dire straits.
    On reading, my crime fiction is essential to my well-being — and so, too, the blogs I read daily. With books, I just assume I can’t remember some of what I’ve read so I always start out reading the last 3-4 pages or last chapter of what I read the day before.
    A friend of mine with ME/CFS years ago told me to just drop beating myself up about the
    memory issues. I’ve pretty much accepted it all, except when someone else gets cross because I forgot something.
    I just stayed on the phone too long with someone who called me late, and I have to get up in the morning, and that may be impossible as I’m now wired. What little it takes to do that!
    Trying to keep all of this straight, while needing human interaction and intellectual stimulation is really a juggling act. I need a rule book for myself!
    This blog is really amazing.

  28. Penny says:

    Thanks Jocelyn for once again articulating so well what this damned disease is like. I haven’t been bed bound, and I am doing amazingly well (comparatively), thank goodness, but the continuum is so so familiar. The light and sound sensitivities, jumping like a cat at a small noise and the horrid adrenaline rush that would cause hours of illness. The intense physical reaction to emotional stress (shaking, nausea, ‘fatigue’) even when you logically KNOWS it’s not that big of a deal. Having to use a neck pillow in the car because holding my head up was too painful/exhausting even for short trips. And having to keep my eyes closed because my body interpreted every iota of motion as a dire threat to life and limb. The memory issues, not being able to read or follow basic spoken conversation because I’d forget the first half of a sentence by the time I got to the second half.

    Oddly I generally was okay watching tv, but leaned heavily on shows that I was very familiar with or that were heavily formulaic and I’d watch the same show over and over again (ie. every episode of Eureka starting with season 1, rinse, repeat, repeat, repeat…).

    Hugs to you, yours (and all of us), and may your ‘things’ continue to increase.

  29. kathy d. says:

    Happy holidays and new year to you both!

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  31. kathy d. says:

    And a few weeks ago, me, the super-organized, fussy proofreader, insisted to two people that a name beginning with “G” came before one starting with “D” in slphabetical order, because the second letter was “R” as opposed to “U.” I couldn’t even figure out my brain’s illogic until I looked at it several times. I laughingly told them “my brain must have taken a hiatus,” but was I surprised at myself later on. This must be CFS/ME.

    • Yocheved says:

      I’ve been touch typing for the past 30+ years. I’ve never been super fast, but I’m fairly accurate – until lately. I keep forgetting which keys are which, and where they are! Thank the typing gods for spell check and the delete tab, or else my writing would be completely unintelligible.

      Even worse, the other day my daughter asked me what 3+1 was, and I had to stop and think about it for a minute! :-O

      • Jocelyn says:

        Yocheved, you should see me counting up the points on potential Words With Friends plays! It’s pathetic to hear myself counting up ones, twos, and threes. 😦

    • Jocelyn says:

      It’s a lot easier when those moments happen among sickies, isn’t it? You can just say, “Whoops, brain fog, sorry,” and everyone understands.

      • Yocheved says:

        A while ago I treated myself to a 15 minute shopping trip to a thrift store (and paid for it for days later.) I bought myself a little sign to hang over my desk. It says “Of all the things I’ve lost, I miss my mind the most.” Funny, sad, and very true. I knew I had to have it.

        My daughter decided that I needed some cheering up, so she decorated it with sparkly nail polish. It’s a much happier sign now. 🙂

  32. Curiosity says:

    First off, thank you for articulating this so well. It must have taken you forever to put together!

    It’s so refreshing and interesting to read so many comments here from people at the severe end of the spectrum. Knowing I’m not alone makes it much easier somehow. I’m doing much, much better than I was at my lowest, but your routine of preparing your own food still sounds prohibitively exhausting to me. 🙂 Two years ago, though, I was at that stage where my husband had to roll me over every half hour to avoid bedsores because I couldn’t do it myself, and my legs and hands would sometimes completely lose the power of movement, and I had to ration how often I touched my cat who lay beside me because that effort counted as a significant part of my daily resources. Compared to then, I am doing amazingly well.

    Now I would just love to be able to ride in the passenger seat of the car long enough to get to appointments without trouble (even still fully reclined and with my feet tucked up), or to talk with friends for a short visit without breaking into sweats or crashing the next day. Or to do as many light mental activities as I want (reading, tv, computer, etc.) without that horrible burning feeling in my brain and down my spine. I really think that at this point I could come to terms with continuing to be bed ridden for a long time yet, if I was able to write, or play an instrument, or learn a language. I miss that kind of thing dearly.

    • Jocelyn says:

      Welcome, Curiosity! Thanks for coming by the blog to visit and saying hello, and my sincere thanks for spending some of your precious energy on commenting. I’m very sorry to hear that you are so ill, but glad to hear you’ve improved from two years ago. Those little improvements mean so much. Along those lines, it does take me a long time to write an entry, as I only have so much arm steam a day, but for years a sentence was an enormous trial, so this is a great improvement.

      I would love to ride in the passenger seat too! I go to appointments via the back seat, and just for the three minutes it takes to get to the local doctor’s office (we’re very lucky he’s so close) Chimp puts big fluffy sofa cushions on the seat so I won’t get tired out from the bouncing of the car. And I know very well that burning feeling! Mine is much improved, but there are things like music and video with a lot of motion (or both together, kryptonite!) that I have to be sure to avoid.

  33. mimiandtilly says:

    Light, sound (i wear ear plugs a lot!), standing, emotional stress, processing sugar/junk food, music, wearing necklaces hurts my neck, thinking, talking, being in the presence of other people (not just those with heavy energy. I spend a lot of time alone wearing ear plugs & meditating/being mindful, while breathing slowly & lying down. I can really relate! Em x

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  35. Ella says:

    i come back to this post over and over, appreciating it. It is something i share with friends who are trying to understand our experience. thank you so very much, Joc.

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