Good Days and Bad Days with ME/CFS

Inspired by Change4ME Au’s Good Day/Bad Day series, I thought I would take good day/bad day shots of my own. So here is a little look at each, although as with almost everything in ME/CFS, it’s more complicated than it might seem.

A good day: This photo of me, Chimp, my mom and stepdad, was taken in December of last year, during a short visit they paid us. When my mom comes to visit, she stays at the house, but when it’s the two of them, they get a hotel, because the added noise is over my threshold of tolerance. I need to have been doing relatively well (no sleep problems) in the weeks before they arrive in order for a visit to be possible. While they’re here, they often do stuff around the house that Chimp hasn’t been able to get to, and I need energy to deal with that happening as well.

good day 2013I do like to take a picture when we have visitors if at all possible, but it’s not as simple as sitting down and pressing a button.

Because I am a bit insecure about how I look without makeup (due to very thin, pale skin I have pronounced under-eye circles; I used to wear makeup everywhere including to the grocery store), I have to put some slap on before we have our photo session. Because I’m out of practice, it takes a long time, and because I have to sit up to do it, takes a chunk of energy. Furthermore, the makeup itself actually makes me tired. I have played around with using or not using several products – I had to give up my MAC foundation entirely, because it was especially problematic in that regard, but even just a little Dermablend, powder, and pencil has its fatiguing effects. For pictures, I typically brush my hair and pin it up somehow – I wouldn’t quite call it “styling” it, because any positive aesthetic appearance it has beyond a couple of barrettes is just the result of rolling it into a bun while it’s damp.

Then I have to use the cognitive energy to decide if I want to change into something like an Actual Top (I never bother with Actual Pants – too draining), the physical energy to get it and change into it, the physical energy to deal with the pressure of a garment that is closer to my skin than my usual loose-fitting t-shirt, and the cognitive energy to tell my body to try to stop noticing that I’m wearing something close-fitting.

Next is the actual photo, which involves walking out to the living room or kitchen, and sitting up – not just sitting up, but sitting up with good posture so I don’t look like a lump, which is rather taxing when you don’t use those muscles much. We do several rounds so we are more likely to get something we’ll all be happy with.

Once the photo is taken, I have to wash my makeup off and get out of my dress-up clothes. At that point I’m usually feeling that all-over burning pain that indicates I’ve overdone it and crossed over into what I call “fried.” It feels…crispy. I don’t seem to be able to manage a picture without it happening.

Thus, a photo session like this usually costs me about three days of worse function. So the picture itself is deceptive. When you see me sitting up, my hair somewhat done, with makeup on like that, it would be easy to assume that those activities are a routine part of a “good” day, when in fact they’re a special effort that comes around perhaps a few times a year.

A typical good day for me involves much less activity – walking from bed to kitchen, getting my breakfast, reading on the computer lying down, maybe getting up to fetch an afternoon snack, a trip to the nearby bathroom, typing a paragraph or two, having a bath every third day, walking back to the bedroom at night and dragging a toy in front of the cats. That’s average.

On a very good day, I might add some extremely light housework, like hanging up towels, putting away my shirts and pants that Chimp has folded, feeding the cats, or cutting up some fruit at the kitchen table.

bad day 2013Now here’s a picture of a bad day – really beyond a bad day into a terrible day. Last summer I ate some suspect cucumbers and gave myself a lovely case of food poisoning that lasted for a couple days. I had recently seen the good day/bad day photos, so I had Chimp snap this one of me.

I wasn’t reading on the computer that day, and I certainly didn’t get up to get myself a snack. I was just trying to hold on until my system would stop flipping out.  When I look at my eyes in that picture, it doesn’t look like I’m in there at all. I certainly didn’t feel like I was. It took about two weeks to recover from that bout of food poisoning.

On a more typical bad day, like one that comes along with a particularly poor run of sleep, I might walk out to the kitchen, get breakfast, read, and walk back to bed at night, with Chimp taking over all the other tasks.

So I would say that my average good day, in reality, appears physically closer to the terrible day than it does to that good day in which I’ve made myself somewhat falsely presentable once in a blue moon.

Have you taken good day/bad day pictures? What do you think of as the difference between a good day and a bad day for you?

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17 Responses to Good Days and Bad Days with ME/CFS

  1. Libby Boone says:

    Another amazing post. I must say that you have told my story already! With the strong caveat that so far during the course of my illness, I have had years or months of being a “moderate.” So in that I am quite fortunate. You and Chimp are an continual inspiration.

  2. Kimberly Matthews says:

    Thankyou for an interesting insight into your good/bad days. I’m lucky in that my CF is fairly mild, I think because it was caught early on and managed well by a very good doctor. So on my good days I am able to get up at about 10am, have breakfast, do a bit of housework or shopping, have lunch, then go to work for about 3 hours in the afternoon, do a little bit of something in the afternoon and then early to bed (with a shower thrown in there somewhere every couple of days in place of my morning or afternoon activities). I have been very lucky to have found a workplace which is wonderful at letting me onky work such short hours, which has made a big difference to my health. I used to try and work regular part time hours (8 hour days, 3-4 days a week) and wound up really suffering.

    On a bad day I sleep till about 11/11:30am, get up and have breakfast, then curl up on the couch in front of the TV or a movie, have a no cooking requires meal (or get mum to make me something :) and then go back to bed.

    On a really bad day I stay in bed, just getting up to get something plain to eat or to use the bathroom.

    Hopefully we will all have more good days than bad :)

  3. amara says:

    You are extraordinary. And no amount of illness can hide your inner beauty or steely strength of character.

    Thanks for being you. For inspiring others. And for your courage.

    Big love
    Amara

  4. Kirsten says:

    The running commentary of preparing for a photo was so absolutely what I do too…it had never struck me as in any way ‘abnormal’ until I read this, because it’s been my reality for so long. I cannot imagine how different all that would feel if we were healthy.

    I took some photos for the Change4ME project, and it was rather confronting. But also empowering in a way – to feel more ‘seen. The real difference for me was in my eyes. In the ‘bad day’ ones I look haunted, like a soldier returned from war, as a friend suggested. The ‘good’ ones I can see at least a pretense at life.

    Thanks for the window, and the reflection.

    • Jocelyn says:

      Yes, Kirsten, there’s something about the eyes. I have said before that I feel like I can see ME on people in their pictures. I don’t know what it is, really, but I feel like I recognize it from seeing it in my own face. And it is amazing what we get used to as “normal.”

  5. Christine says:

    I do take pictures, but unlike you I would never ever put on make up if it would cost me 3 days. I like to look at my pictures and recognize the true me. By putting on make up I would feel that I pretend to be someone I’m not. I’m a big reality fan and hate the, what I call, the positive movement. Think and look positive and miracles will happen, nonsense. All the ever happens is that you are kidding yourself and the rest of the world.
    For years I pretended to be well, to do more than I could, to push myself over the limit with encouragement and support from my doctors and my environment. Till I crashed bad, after 30 years with ME I became bed bound. I’m convinced that the pretending to do things that I couldn’t to be someone that I was not, contributed heavily to me becoming bed bound. It gave me time to think a lot and I swore I would never ever be anything more or less than myself. If that includes looking like a wet towel on a photo than so be it. It will be a wet towel with a big smile though because I saved myself from putting on make up( like a mask) and clothes. This is what me with ME looks like. Nothing more nothing less.
    Ever since that time I make it my mission to tell young ME patients to not do more than they can, to be who they are and to not put on a brave face for anything. People are trying to read your face, it will tell them how you feel, if you want them to take you seriously you have to show them who you are.
    Off my soapbox.:-) This is in no way meant as critique on the fact that you do put on make up but rather an explanation why I don’t. I deeply respect other people’s way if life and their being. If putting on make up makes you feel better and happier than go for it. I’m just advocating for the opposite.:-)

    • Jocelyn says:

      Christine, I think you may have dashed off this comment in a hurry. Consider that if the person reading it does wear makeup, it seems to imply that people who do so are fake, that they’re pretending to be someone they’re not, that they are kidding themselves, and that they don’t want people to take them seriously. Then you say that it is not a critique and that you respect other opinions – but that does not feel very convincing after the previous statements. It comes across as if you are judging people for doing something differently than you do.

      • cblondie says:

        I think there is a big difference between spending a bit of extra energy sometimes to look nice and so something special, and regularly pushing yourself too far pretending to be someone else. I personally don’t wear makeup as it and I just don’t get along :). But that doesn’t mean it’s not worth it to others. I use my little extra spends to do things like go out with friends for an evening, or travel to see family (with someone else driving!). Yes you may need exrta time to recover, and sometimes you feel crapy afterwards, but I still think it’s worth it for that bit of special :)

      • Jocelyn says:

        I agree, cblondie, many of us choose little things that can help us feel “normal” in the midst of a life that’s been turned pretty much completely upside down a lot of the time. Makeup is one of mine because it’s fun, it’s something I can still do to an extent…and I get asked if I have two black eyes without it! :D

  6. hayley-eszti says:

    I love the idea of a good/bad day post. It’s interesting to see the difference in the two for different people. I hate having my photo taken on my bad days because I always look back like ‘URGH I look SO ill’ but I think it’s good to document the good and the bad, that way when improvements are made I can look back and say ‘well at least I’m not as bad as I was in that photo now’ I think I might do a post like this in the future, and I will link back to this post and Change4ME :) Thanks for sharing and may I add in your bad day photo you still look great (you’re a natural) even if you didn’t feel it at the time. xxx Hayley-Eszti from http://www.hayleyeszti.blogspot.com

    • Jocelyn says:

      Welcome, Hayley-Eszti! Thanks for saying hello, and the kind words. I agree, it’s good to remember the bad days, as little as we like to, because they provide so much opportunity for gratitude. But I hope you will have fewer and fewer of them, just the same! I added you to my blogroll and RSS reader so I can keep up with your writing. :)

  7. Yocheved says:

    You are so, so lovely, even on your terrible days. You have this delicate fairy – waif sort of look to you, and gorgeous cheek bones.

    Much more than that, your inner beauty always shines through, in the care and love you give for others by sharing your knowledge. You inner strength is remarkable.

  8. kathy d. says:

    I guess this is a coping mechanism, to try to figure out what we could have done so that we didn’t get ME/CFS. And I guess I have done this, too, wondering would I have stayed health if I hadn’t worn myself out working full-time, then pushing myself after work on projects I loved to do and not resting properly. And I started being tired all the time even before I got ME/CFS and I still pushed myself.
    But then I think of people I’ve been close to who got cancer at a young age, and those who passed away, one in his 20s, one in her 30s, a woman who had a wonderful relationship and two little boys. What could they have done in retrospect? What could one of my family members have done to prevent getting cancer also? I don’t think anything. What could another friend have done; she passed away in her early 50s and fought breast cancer for 11 years?
    Medicine science just doesn’t know these things — yet. Someday yes, these factors will be known.
    When I think about getting this disease, I do think of those who have gotten cancer. That puts some perspective into this thinking. We just don’t have control over everything in our lives, and that’s hard to reconcile.
    I just don’t think about it because I have to figure out now, how can I do some things I want to do, even if at home, and how can I get through each day. What do I need to do that? My biggest hassle now is how to take care of dental problems, my broken arm and other medical problems when I have no energy to go anywhere. This is an obstacle. I have to tackle this. I can’t think about the past. This is my reality. I have to figure it out.

  9. You are an inspiration. I don’t how you cope with such severe ME, this relapse of mine has been rotten enough, but I guess we all adjust, adapt, survive – it’s just sad, as one commenter said, what we sometimes have to take as ‘normal’. Gentle hugs. :)

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