I don’t look sick.  At least, not after I’ve put a blob of blusher on my pasty white cheeks, and concealed the purple circles under my eyes which make me look like a heroin addict, and if I don’t use my crutches, or my Oval 8s, or my mobility scooter and my arm isn’t in a sling (the 2 other braces I never leave home without, and the TENS machine which keeps my back pain manageable, are mostly hidden under clothing).  And because I don’t look sick, I’m treated like I’m healthy.  Obviously.

Even people who know I’m sick treat me like I’m healthy.  I’m not quite sure why that should be.  Maybe they just forget? (I wish I could!).  Or maybe they’re not aware of just how sick I actually am.  Or maybe they’re in denial.  Who knows.   But because everyone and his dog “forgets” or doesn’t know I am sick, there’s a LOT of pressure to be healthy.  Which I’m not.  Obviously.

Mentally, I am as motivated to do stuff as I was before I got sick.  Combine my eagerness to do stuff and the continual pressure from other people to do stuff and it is massively tempting to do stuff I shouldn’t.

I drove past a little wood near my house the other day.  It’s full of heather which is currently in full bloom and looks spectacular.  “That would make a fabulous backdrop for a photo” I thought to myself.  So today, with dog in tow, camera slung over my shoulder and my arm still in a sling I toddled myself off to said wood to take a couple of photos.  It’s about a 10 minute walk from the car park, on the flat.  Do-able on a good day and today wasn’t a bad day.   I got to where I needed to be, tied the dog to a tree so he didn’t wander off and took my pictures.  Halfway through I literally felt my energy draining out of my feet and I started to feel queasy and light-headed.  I mentally stamped my foot in frustration.

By the time I’d finished taking my pictures and walked the 10 minutes back to the car I felt like death warmed up.  I had lost all colour in my face, wanted to throw up and was so foggy-headed I can’t even remember the 4 minute drive home.  I had to immediately lie down and even though that was three hours ago I still feel like shit.  My head is thumping, I’m struggling to think straight, I’m dizzy, my hips are killing me and I feel properly queasy.

I really enjoy public speaking and I think it’s something I’m fairly good at.  Consequently, I am constantly asked by various camera clubs to give talks and demonstrations which would earn me some much needed cash.  There’s nothing I’d like more, but I turn down virtually every request because I realistically know that it’s all too much.

My photography friends are constantly asking if I’ve entered this competition, or that competition and simply can’t understand when I say “no”.   Two people at my new club have asked if I’ll mentor them, and I’ve had to say “no” (so hard to do when you’re trying to fit in and make new friends 🙁).

Now I’m selling some of my pictures, there is a lot of expectation that I will be churning out new work at least once a month.  And while that would be do-able if I were healthy, it absolutely is not do-able because I’m sick.  I can only take pictures, and edit them, on a ‘good’ day (and I use the term relatively) and then only for very short amounts of time.  And if I’ve used my energy for the day doing photography I don’t have any left for other things, like bathing or cooking or laundry or doing my Tesco shopping.  Consequently, it can take months to produce just one photo.  I was working on a new image last week and didn’t even have a wash, let alone a shower, for 3 days and lived on oven chips and bananas.

You have to possess super-human emotional strength when you are sick.  The strength to ignore other people’s expectations, the strength to resist the pressure to join in with healthy activities and the willpower to fight your own desire to want to do more than you know you’re capable of.  It’s a lot, and even after 25 years of illness I still give in more times than is good for me.

It’ll take me a couple of days to get over today’s little photography outing and during my recovery nothing will get done.  I won’t eat properly, dirty dishes will pile up on the kitchen worktops, I still won’t get my shower, and the laundry in a heap on my bedroom floor waiting to go in the machine will no doubt still be there on Saturday.  Was it worth it?  Depends on whether I end up with an award-winning photo or not 😁!

It’s a fine balancing act.  Despite my illnesses I still have to have a life, otherwise what’s the point?  But I’ve been sick long enough to know my limitations and even though I do cross the line now and again it’s not something I make a habit of – the consequences simply aren’t worth it.  Even after all this time, however, I do still struggle with other people’s expectations of me.  After a couple of decades it’s wearing on my soul to keep saying “I’d love to, but I can’t” and to watch everyone go off and have fun and be left at home alone for the six millionth time.  I’m sure most people just think I’m massively anti-social – even though they know I’m sick it doesn’t seem to compute that this would limit my life in any way!

It’s tough to have to constantly police your own activities and reminds me (as if I need reminding) of how strong we all are.  Every second of every day.  Yet we receive no recognition for the war we fight or the sacrifices that we make.  Quite the opposite.

10 thoughts on “Limits

  1. Louise McCrory

    This is sadly so relatable. Others expectations, our ambition versus reality is also a massive mental challenge to reconcile. Not yet 11am and already had to nap. Dressed, if not showered from dismal NIreland.


  2. Guenevere McMahon

    Off topic, but I wanted to let you know that my son was transplanted day before yesterday (08/25/2020) and is doing really well so far.

    On topic: Yeah, looking good is such a signal to people that you are fine, and they really want that to be true, so they don’t think past that. It’s amazing how judgmental people are, too, based on so little information. “What do you mean you won’t shake my hand? You look fine.” I may, but I’m delicate af and I’d rather you didn’t roll my poor hand bones around, thanks.


  3. Jill Betteridge

    I so agree with all you say about feeling ill but not looking it. Was only discussing this with my counsellor this morning.
    I look at other people going about their normal day and envy them.
    You are not alone x


  4. TC

    I get what you are saying completely. I am hoping to return to my artwork and photography and certain health issues have taken over. I’ve not worn makeup for two years and taking a shower is such a mammoth effort that it’s not happening as often as I would like.

    Have you ever been checked out for Ehlers-Danlos? I was diagnosed with ME years ago and I have since been diagnosed with EDS, POTS, MCAD, neuropathic pain, pituitary tumour, secondary adrenal and thyroid deficiency and recently steroid induced diabetes and NAFLD.


    1. Jak Post author

      Hi TC

      As the title of my blog is “my journey with Ehlers-Danlos syndrome, M.E. and Mast Cell Disease” I think we can safely assume I have been checked for EDS 😉




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