Sunday, May 15

let's all wear my shoes

I often wonder what the world would be like if everyone was like me. The first conclusion I come to is that there would be no ‘everyone’ because we would be too ill to work for food, and would have starved to death long ago. The unfit do not survive.

After I have finished with this sobering thought, I move on to wondering hypothetically what it would be like if society wasn’t designed for able bodied people, because that is where a significant chunk of my discomfort comes from. The energy packet and lifestyle of the majority is completely out of kilter with my own. Imagine if society was constructed for a different set of humans.

One of my parents, whom I love dearly, is celebrating a significant birthday this year. I was fully expecting the festivities to occur from twilight onwards. This is a lovely time for most to celebrate, after work, over the heartiest meal of the day, lingering on into the night. I had already decided that I was willing to suffer for this. Headaches, insomnia, vertigo, exhaustion, a few days of dysfunction. And then the invitation arrived, and it was for a 10am brunch. Joy erupted inside me. My first thought: oh my goodness, I don’t have to add extra pain to my already pain?! Of course there will be pay-back for the day event, but not to the degree there is for a night event, an event that begins when I have accumulated an overwhelming need to lie down in dark silence after being up for eleven hours already. People have every right to invite me to celebrations that work best for them, just as I have every right to decline and preserve the health I do have. But when they have considered me to a significant degree, that warms me right through to my fingertips. They care about me too. That is exactly when people like me would have their celebrations.

I have been very isolated these past seven months, because of that vicious post-baby vertigo. My sense of missing out has been strong. One morning I decided I could not endure another moment in my dull home with my moaning-myrtle infant, and I went to hang out with my friends from church as they do every Friday. For the first thirty minutes, it was so worth it. I was like yes, this is what I need. Two hours later, lying on my couch, vertigo, unable to care for child, I vowed off the experience. It had been a welcome distraction but the afternoon consequences were too great. I couldn’t afford to suffer that much. And if I had stayed for just half an hour, the part where my body was ok? Well, then I’ve only just arrived and barely settled in before I bluster out. I felt afterwards a stabbing envy that my friends were going home with their babes in tow, and probably getting lunch for themselves, probably even cooking dinner for their families, something I haven’t done in years. I couldn’t even feed a puree to my baby after going there.

The isolation hit me in the face. I crave companionship, but companionship doesn’t come in my size range. It comes long, frequent, and inoppurtune. I could come and go in a manner which works for me, but in my ideal world, I am not the odd one out, always sticking out like a sore thumb, always modifying because the default is not made for me. My utopia is a place where social interactions are designed for bodies like mine. A place where I am not perpetually the uncommitted no-show. Surviving with very little face-to-face friendship, or suffering for what I do partake in, this is one of the most awful parts of chronic fatigue syndrome.

How would people like me get their companionship?

We would meet in very small numbers, fortnightly, in an open air park. To remove the intensity of walls, confined spaces, fluourescent lights. We would meet for an hour, maximum, reclining if possible. We would never meet before 10, or after 4. Maybe we would come by taxi. By broomstick would be nice. We would shop at markets and naturally lit street shops, not malls. We would rest in coffee shops with day beds while we were out in winter, and on the grass in summer. Actually, no, it would always be spring. Maybe we’d all send a message to each other after we’d caught up, saying we were thinking of each other as we recover, reminding each other that the pain wouldn’t last, and it was worth it for our spirits.

The strain from not fitting would be gone, even if the rest wasn’t. The rhythms we formed would be custom made for our abilities, and it would be less lonely.

But, I wouldn’t wish this on my worst enemy.
Let alone the majority. 


  1. You write so beautifully Danielle, I love these ideas of he perfect catch up for hose with CFS, it's so nice to read someone who just gets it all! It think that's one of the main things that non sufferers just don't understand... The exhaustion of over stimulation and social events even my wonderful family don't really understand this! I am currently pregnant and it's been very difficult with hyperemesis for the first 16 weeks complicated by CFS! But I'm getting there, slowly building my body back up amongst anxious moments worrying how I'm going to care for this little person but then being overwhelmed with the idea of how exciting and wonderful it will be:)

    1. Thankyou for this comment! Congratulations of becoming a mama! I am so sorry you have had to suffer hyperemesis ontop of CFS - I didn't even have that, and was totally crippled with the sickness. It's a depressing burden, but maybe it's absence will make the other baby challenges seem lesser? One day at a time with great open-mindedness and even us sickies can have the joy of being mothers.
      I feel kind of encouraged and also sobered that you so fully relate to the social predicament...the overstimulation is just nearly impossible to convey to someone who hasn't experienced it.
      I think you may have followed me on insta, so I look forward to seeing your journey.
      Love xx

  2. Thanks Danielle, yes that's what I'm hoping too that it will make the other stuff seem a little easier:) I've really started trying to make a conscious effort to lower my expectations of myself even further, that has been the hardest thing about having a chronic illness for me... Leaning to accept I can't do an be everything to everyone and it's a work in progress! So much emotional stuff to deal with on top of the physical! I've just looked at your beautiful Insta photos your little Aurelia is just gorgeous and I just love her name:) You look like you and your husband are a wonderful team and are doing an amazing job being parents, I hope you get to enjoy the little moments when you feel well enough to! Xx

  3. Hi Danielle, Just thought I'd stop by your thoughtful and ridiculously well written blog as I haven't been here in a long time. Always enjoy your writing. Your post reminded me of an interesting book I read a while ago called 'Everyone here spoke sign language.' There was an island in the U.S. with a high proportion of genetic deafness but even families that didn't have any deaf people learned sign language. The majority of hearing people all accommodated to the needs of the minority who couldn't hear and they discovered many unexpected benefits in the process. I often think as Christians, if we really 'give special honour' to the weaker vessels as Paul says, it should be possible, at least in a Christian community, for us to learn to adapt better to the weak. If only I was well enough to teach people these things:) Doesn't help much with the world at large though, as this post explains so well. Oh well, one day, all will be well. Anyway, great post. The Lord's strength. Regards to Ben and also any other family members lurking around your blog:) and please don't feel any need to weary yourself with a reply to this rather rambling comment.


    1. I love the timing of this comment, because Ben and I had just been listening again to the CD you gave us, 'from this dark vale of tears', and wondering how you are getting on. Such a melancholy and encouraging collation. I can deduce from your comment that you are still waiting for The Day (or maybe before) to function normally too. Your words and well-explained correction reminded me of the conversations I got to have with you when I was seventeen which seems a long time ago. Your sharp mind and great gentleness lives on :-)
      This book sounds fascinating and I love that the minority was numerous enough for society to adapt to. Heartening thought!
      I will say your hellos to my clan.
      Take care!

  4. Hey Danielle, just a quick edit to my previous comment. I hate publishing errors, even if no-one notices. I think I conflated two passages of Scripture which make a similar point; one referring to wives and the other referring to the weaker or less attractive parts of the body. Instead of 'weaker vessel' I probably should have said 'weaker members of the body' for better clarity. Hope this proves a better than average week for you. Keith