Your Questions 102: Rest part A

Here’s the next question I get a lot of:

Q: Why do you say you need so much rest, yet now & then I see out and about, travelling, doing stuff?

This (or a version of this) is another of the biggest questions I get asked most. It’s a difficult one to explain or to understand, but here’s the answer:

I’m going to start by talking about energy. You may have even heard me refer to energy as “spoons”. Here is the original Spoon Theory, a very clever analogy which has taken the chronic illness community by storm and provided a language to help explain what those with low energy experience. I’d highly recommend reading it if you really want to understand it. But at risk of doing a shocking job of reducing it to a nutshell, when she was sharing experiences with her friend, she was sitting in a cafe and grabbed all the spoons around her to explain. Imagine each day we all wake up with a finite amount of energy. Through the day, we use it up, and then we sleep, rest and wake up with a new supply.

Imagine each day we all wake up with a finite amount of energy. Through the day, we use it up, and then we sleep, rest and wake up with a new supply.

Yes, we are all different, our bodies use more and less than the next person, we each have a unique metabolism and so on, but in essence, let’s say the average person wakes up with about 100 spoons a day and spends most of them by the time they fall into bed that night.

Then we can relatively easily allocate a spoon for a shower, a spoon for breakfast, and so the day goes on. Most people have ample spoons to spend for these vital day-to-day tasks. But what if you use up way more spoons on basic tasks than the next person? Or what if you wake up each morning with only 70, or 60, or even only 10. If you had only 10 spoons to spend, and a shower takes 1, eating breakfast takes another, how would you choose to spend them? Keeping in mind that the vast majority of spoons we don’t even register we use and also remember that when people wake up with limited spoons, the same happens tomorrow, the next day and the day after.

Two things happen to people with chronic illness and spoons. They either wake up with only a few to start with, or their illness uses up a whole chunk of them without permission. (or both!)

Using Up Too Many Spoons:

One way to lose a lot of spoons is when our bodies are fighting for us. When we are unwell, our (healthy, “normal”) bodies send out the army to beat whatever is ailing us. If not, we will die. Our army is our immune system and while most people assume they don’t see it, we do! Each time you get a cold, the cold itself has few systems, but fevers, shakes and aches are all not from the cold at all, but from our immune systems fighting. And if you don’t believe me how many spoons it takes to fight a cold, think of how exhausting it is to have the flu! Those are your bodies fighting hard, and they leave few spoons left to do anything during the day. Our Immune systems use a LOT of spoons. If you have the flu, you lose 70 – 90 spoons, which leaves precious little to do anything else, even eating or reading a book, never mind having a shower … and we all know what that feels like right?

So imagine if your body is constantly fighting a virus it can never win, a disease that constantly fights back. For anyone with a chronic disease, their body fighting to keep them alive uses up a chunk of those spoons.

Another way to lose spoons is to lose them to pain. Pain is absolutely mind-numbingly exhausting. How? When we are in pain we tense up our bodies to try and protect ourselves, we wriggle, we move, we rub, we toss and turn and we burn up a huge number of spoons every day. Obviously, low-level pain uses way fewer spoons than high-level pain, but long-term pain uses way more than short-term pain. It makes sense pretty quickly that any kind of long-term pain steals valuable spoons.

Waking Up with Not Enough Spoons:

For many chronically ill people, never mind how many spoons get used up on other things, many of them wake up with only a few to begin with. ME/CFS is one such condition, and without going into exact specifics, those who have been handed this particular burden to bear simply wake up each and every morning in the same condition as someone else who’s just had a full on day …before they’ve even started. So to wake up totally spent, feeling like you’ve been hit by a train, and with only 10, or 20 or at best 30 spoons to spend, for the entire day, it is horrific. But it becomes their new normal.

So what does all this have to do with me?

First of all, if you remember from my last question/answer post, I shared that because my tendons and ligaments are so loose my body uses up a LOT more energy than most people to keep it stable, I lose a bunch of spoons each day simply to that. It’s not quite like burning energy faster, but more that it goes to other things… let’s say I lose 10 spoons a day from this alone.

Secondly, I am in a huge amount of pain, all the time. It’s very easy to forget that I am never free of pain and that even painkillers don’t do anything. So my pain alone steals a lot of my spoons. I’ll give it another 10.

Thirdly, no one is quite sure why (though there are some theories, I’ll explain them another day), but there is a much higher proportion of ME/CFS sufferers in the EDS community than there is in the general population. So I also have a secondary diagnosis of mild ME/CFS which means each morning I wake up with about 3/4 of a “normal” dose of spoons. That means I start with only about 75 spoons each day instead of 100.

Starting at 75 and losing 10 to pain and 10 to floppiness, before I’ve done a thing means I only get about 55 spoons a day for your 100. It’s a blessing compared to those who wake up with half of that or less, but we all use up a whole chunk of spoons on the basics of life and on a good day it leaves me with little for outdoor life, and on a bad pain day it leaves me with nothing at all.

So I do a number of things:

  1. Two days a week I only spend about 20 spoons (regardless of how many I wake up with). I don’t leave my bed other than for the basics. This doubles by giving my joints a rest too, which in turn gives my body a rest from the pain, which in turn means my pain steals less of my spoons on an ongoing basis. It is still very painful to do nothing, but I am not putting pressure on my joints like “doing life” does.
  2. The rest of my days are only half days. I don’t get up before 8am and I’m usually in bed by 3pm. I never extend that on more than 2 days a week, so I often get to spend up to 2 evenings out (though not late).
  3. I then usually have enough spoons left to spend 2 short days a week trying to do “normal” things which is vital for not just my body but for my soul too! Because I have such a limited world these days, you only see the pictures of the smiling face, you don’t see that I left early or went to bed straight afterwards. You see the travel pics but you probably don’t stop to think (not that you should) that most of the pics are from my bed, the plane, the hotel or the transport. Tomorrow we go home from 2 weeks away in Cape Town. I’ve spent 90% of that time in bed. I’ve had 2 short evenings out in the last week and apart from breakfast each day in the restaurant which is less than 100 feet away, every lunch and every other dinner has been in bed. Then why go? The change of scenery from my own bedroom is a huge part of my sanity. It is WAY better for my heart and soul to go along on the trips than it is to stay at home with no help (and I get to eat in bed without having to cook it myself!)

So remember (and I know it’s hard to), if you see me out and about, it is likely one of only 2 outings a week and I’m probably crashed out in bed by the time you get home. And if you see pics of me here and there, remember, that it’s likely from the car, the plane or the hotel room. I do my art from my bed mostly, and the rest of the time it’s a very precious and much needed outing with people who come to support me.

Thanks for all your questions! It’s great, and I hope this has answered some more of them. If not, just ask!


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Dentist Update:

Life sucks.

I love my dentist, he has really taken on the idea of my health issues, and he always explains what’s going on. Today was the second of about six visits in six weeks and it’s so taxing. Today, I was supposed to have two out of about a dozen new fillings, on the bottom left side. The second tooth from the back wasn’t included in the idea, so it was going to be one new hole and one replacement of an old metal filling.

Screen Shot 2018-02-05 at 20.35.54So we started well, though I always have to remind them that I have to have the special green anaesthetic and not the “normal people” blue and feel like a bother that they have to change it all in the machine. (The green one is the only one that doesn’t contain Epinephrine).

It’s one of those machines that sloooowly delivers the dose through a very fine needle on the end of a long tube. The idea, in theory, is that the pain in the delivery of an anaesthetic is from the liquid going in. So it goes in very slowly, which I am told means there should be no pain. But as much as I try not to, I instinctively flinch when the pain shoots up the side of my face like lightening-bolts past my ear up to my temple.

When that was done he asked me what on earth that flinching was all about, and I sheepishly explained it to him. He started saying “what on earth?…” but as I ran my finger along the line of the pain, he changed tack to “Aha” and explained that about 15% of the population have an extra nerve branch called a Retroauricular Branch that runs up there, and sadly I have one. It is neither a good thing or a bad thing… till you need your teeth numbed at the dentist and right at the place where the needle goes in you have this extra nerve and the needle pokes it! I can’t tell you how much it hurts and because it is a slow process, it isn’t fast either 😦

On to the fillings and he quickly realized that the tooth in the middle of the two he was working on was in trouble, so instead of two fillings I had three, and the middle one was MASSIVE. And it hurt. Which it shouldn’t. But it only hurt (a LOT) when he drilled on the one side. And as it was the biggest job of the day there was an awful lot of drilling.

Afterwards, he told me that on rare occassions some people have an extra nerve running up the outer side of that middle tooth. It’s not part of the same nerve that’s numbed so it isn’t protected. Really? Two extra nerves, neither of them part of the numbed nerves? And an extra filling? And of course my jaw dislocated through the process but we knew that was coming and there’s nothing around that.

So I’m feeling a little sorry for myself today, and while I feel like I’m a little on the raw end of this particular deal in life, I’m thankful that for the first time it makes sense! I have been told all my life that I’m being a baby and it can’t hurt, but suddenly I can explain why. I even got a wee moment of empathy from MrS (or was that him just cringing at the thought of it himself?).


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How the Dentist Went!

img_4162Well, I cannot tell you how petrified I was going to the dentist this morning!! It’s hard to tell in the photo (ever tried to take a pic of teeth with a phone???), but that crack goes all the way to the gum and it’s right through to the back. I’ve already lost a tooth because it cracked below the gum line, so I wasn’t holding much hope for this one.

I had also stopped going to the dentist because I was feeling I was getting nowhere. Mr. S goes to the same dentist I used to go to, and he’s happy but I’ve had two (yes TWO) fillings done twice over in the last decade or so, so I wasn’t feeling confident in him anymore. After my EDS diagnosis, I was sent to a “gentle dentist” to replace my old metal fillings. He did one-quarter of my mouth last January and I spent the next 3 months in agony and didn’t want anyone to touch my mouth again EVER.

That was till this happened over this Christmas!

Here is a quick sketch of my mouth, and that crack is through my right Lateral Incisor.

Dentist pics 01

I had no idea where to go, or who to trust, I am soooo burnt by doctors who are stumped and their pride gets in the way of real help. But Mr. S convinced me to go back to my old dentist and amazingly his wonderful PA welcomed me back with open arms and found me an emergency appointment.

Dentist pics 03I don’t want to bore you with basic Biology/Dentistry, but I knew the basics of teeth as this: Dentine (or Dentin in the US) makes up the bulk of our thinner front teeth, with the pulp & root at the very centre, and a thin layer of Enamel covering the part of the tooth that’s not hidden by the gums.

Enamel has NO collagen in it. Dentine, on the other hand, is mostly collagen…. and I was born with stuffed collagen. It’s too soft. I knew this, but most tooth pictures show the big fat back teeth which have much thicker layers of enamel.

So, anyway, between my natural fear of dentists, my fear of him not being able to save the tooth and what the outcomes of that could be, my fear that they will forget and there’ll be adrenaline in the anaesthetic (which is there is in all standard locals), and my worse fear that it will wear off too quickly without it (as usually happens, and they stitch me up without any), I couldn’t see this was going to go any way but badly.

I started by explaining that since seeing him last I’ve been diagnosed with EDS. I explained that more importantly, it’s a connective tissue disorder, and that my collagen is not as strong as it should be. He responded by pulling out his book of conditions and of course, it’s too rare so it wasn’t there.

But then he did what I have rarely seen a medical specialist do and he put the info he had together and went with it! He used his brain and on the spot worked out what was going on! I was so impressed I wanted to cry!

He said that the “crack” is right on the line of the filling that he did there 3 years ago, and that while yes, it goes below the gum line, it can be redone. He said that it isn’t a crack at all (even though he could wiggle the piece!!), but that the filling had  “debonded” (rejected, come unstuck) from the tooth! The bond of the filling was mostly with Dentine, which should be rock hard, but if it isn’t, then it can’t bond.

It might not be great news, but at least it makes sense now, and also explains why the other filling near the front of my mouth took 2 goes as well (and may need doing again). He said the cheapest option would be to replace the filling, which may not hold long-term of course, but both crowns and caps require filing back the enamel and bonding with the dentine, which would be a disaster in my case. An implant requires surgery and strong bone structure which of course relies on strong collagen in both the bone and the gum. So basically, we need to avoid implants, crowns and caps at all cost. Things which may be great for other people, but basically we have no option but to go with the simple filling.

The bad news is that this is going to be a problem long term, and I know EDSers who’ve lost all their teeth as early as 39. I’m passed that already but still, I have a mouth full of pain and it’s not likely to ever get much better. But at least now it MAKES SENSE which it never has before. There is a level of comfort in that.

Dentist Pic 04The good news is that he said, “well, we just have to make it stick more” and as he cut away the old filling to expose the raw edge of my tooth again, one normally leaves a sharp “flat” edge. But he decided to file away the edge of the enamel so that it has a bevel edge! While still being a very small surface, it’s twice the surface it would otherwise be! How clever, talk about thinking on your feet and making a plan!

The other thing he did is smooth some of the filling material so that it is overlapping some of the rest of the tooth. The idea being that the filling is now using way more of the enamel that it would have, and we have a chance of it lasting much longer this time. So the new tooth is slightly bigger than it was before and we’ll also have to keep an eye on that, but hopefully, it’ll be fine.

For how long? Who knows, and I think I’m going to be a bit paranoid about using that tooth, but I’m paranoid about so many of my teeth now that I’m running out of options 😦


I have hope for the first time in a long time. And a few more answers!

So I’m going back on Tuesday and he’s going to check out the rest of my teeth and see if there is anything urgent and hopefully fix whatever it was that the stupid guy a year ago did.

I am pretty sure it’s the first time EVER I’m excited about going to the dentist!



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Which draws blood?

This is a follow-on from THIS story, where I tried to explain that it is not the obvious that breaks me. This is another really tangible way I can explain what it likes to have my particular Connective Tissue Disorder.

An Orange, or pair of scissors … which one draws blood?

I love scissors. I don’t know what it is, but cutting paper, fabric, anything really, brings out the creative best in me. A bad pair of scissors is a nightmare for anyone if they don’t cut well, dig into the skin etc, but with a good pair, one that fits my thumb and forefinger perfectly, I can spend hours cutting and I’m fine.

But I have never been able to peel an orange. There is so much about a connective tissue disorder that is very hard to measure, but orange peel is a great example of something that is measurable for me. When a healthy person digs their fingernail under the skin of an orange, even the most resistant peel will always give way before the fingernail gives way from the flesh of their finger right?

But for me, it is the other way round. Even the softest peel sticks stronger to the flesh of the orange than my fingernail sticks to my finger. It is always, and by always I truly mean always, the peel that wins and my fingernail that loses. It is extremely sore, especially as the acidic juice gets into the bloody wound…

So all my life I have either avoided oranges altogether (which I have become allergic to anyway, but that’s a story for another day), or used a knife and spoon to peel them.

You know how you physically cringe when you think of stubbing your toe badly or slamming your fingers in the car door? That’s how I feel at the mere thought of peeling an orange!

Invisible illnesses and conditions are very hard to measure; Pain impossible, along with his ugly cousin Fatigue.



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Which is the Odd One Out?


Which is the lethal weapon? Which one has a head that undoes me?

Guess again. I can hold a hammer in my hand, and grip the thick, solid handle. I have always used a hammer well and in hindsight, I somehow must have learnt that using a hammer properly (using the weight of it to its best advantage and letting it do the work for me), was always good for me. It is one of the many ways in which I have instinctively known to care for my body in the decades before I knew exactly what was wrong.

The spray on the left is also safe for me. Again, it is a “whole hand” grip and a broad movement. I am sure I wouldn’t be able to use either of these things all day, but I don’t have problems using them in the small ways that I do these days.

On the other hand, the aerosol is my nightmare! I can perhaps do a 10 second spray if I have to, but that’s it. I hardly use aerosols anyway and I’ve never used hair spray or cooking spray, but on the odd occasion I need to use spray paint, and I tried again a few days ago. And nope, I will NEVER be trying that again! A single, small joint with high pressure, I lasted a few seconds and that was it, and my finger still hurts.

Why am I telling you this? People see me using a hammer to smash up a bit of tile or plate for mosaic and say “she can’t be that bad”. But they don’t see what I can’t do. The spray can, the tile cutters, the sanders that used to make my creative work so easy…



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Frightened of Losing Your Diagnosis?

img_8897-1Before diagnosis, the decades in the wilderness where I did not even have the words or constructs to understand my pain and exhaustion, never mind anything to understand them, it was terribly, terribly lonely and very, very frightening. I stumbled around in the dark and had absolutely no idea where was I either going to or coming from. I am sure I did the old proverbial “walk around in circles” thing on many occasions without even knowing it.

Then came diagnosis. As I look back on the two years since then, the journey has been just as crazy. But it has been very different too. Diagnosis may be the end of one journey, but it is also the beginning of a new one. A way less lonely journey. Before diagnosis, there was just me. I had no tribe, and I belonged nowhere. Post-diagnosis, I have become a vital member of not only a tribe but an army. I am a Zebra, I belong to The Mighty, I am a team member of many groups, and I feel as though I contribute and make a difference in some small way. I have all the benefits of belonging to a tribe, and I no longer walk alone in this part of my life.

But that diagnosis keeps threatening to change. As each new specialist throws in their opinion (whether asked for or not), as criteria for diagnosis evolves and tightens, and as new discoveries are made, especially in genetics and science labs, the fear of being kicked out of my tribe is great. What would happen if I was told I no longer belong? What if was sent out into the wilderness again?

There are massive potential problems and complications for medical insurance and doctor options when losing the diagnosis, but in many ways, the scariest part is the fact that I would be back to where I was before. Out there in the desert again, a lonely leper.

But the reality is that the door to diagnosis wasn’t just about the specific diagnosis. It felt like it at the time, but in truth, it just led me to find a larger and more complicated tribe than simply the EDS Zebras. I belong to the Chronic Illness world which includes the undiagnosed! It turned out that I belonged to a whole tribe that I didn’t even know about, that I didn’t know that even existed, never mind how to find them!

When Fibromyalgia was added to my official diagnosis, I wasn’t stumped and lost like I was after the EDS diagnosis. Instead, I simply popped over to the other “department” of The Mighty, asked around my “Rare Diseases” community, popped the questions on MY Facebook page instead of having to search for new people, and had more answers than I could cope with within the hour. If I was to lose my EDS diagnosis tomorrow, I would not be all alone in the wilderness again, I would simply slightly adjust my position among my comrades.

There are over 200 Connective Tissue Disorders (CTD) and every doctor, no matter their other opinions, agrees that I, and my children, all have a CTD. They also agree it is genetic as we all have the same symptoms. Most of those CTDs fall into one of a small handful of categories, and we are very clearly (thankfully) ruled out of most of them because they do have specific tests. The closest fit and the only category left are the Ehlers Danlos Syndromes, so while we still don’t fit very neatly into one of them yet, the doctors tell me it doesn’t really matter which one because we can’t fix it anyway.

When I think about it with my heart I get fearful and anxious. I can’t help wanting to be more of a certainty. I am frightened of being a “token” member instead of a “real” one. The memories of the wilderness are all too near, and they haunt me in my weakest moments. Pleeeease don’t send me back out there to Leper Land! Pleeeease let me stay here in the safety of my tribe! I am a zebra, I always have been and I always will be.

But when I think with my head I know that for the most part, they are right. And no matter and change in diagnosis, I will always belong to the tribe.


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Meet Chrisjan, Guest post…

Today we have a guest post from Helene, who has so generously sent me her own story with EDS, and I decided that as she clearly written it from her heart and share’d so honestly, I will leave it in her own words and let her speak. For me, it is a huge reminder that life happens to all of us and that chronic illness gives no one a “get-out-of-jail-free” card from the rest of life’s challenges. In other words, you don’t get a chronic illness instead of other things, you get it as well.
Here she is will her gorgeous son Chrisjan:

Screen Shot 2017-05-30 at 5.10.49 PM“Good Afternoon, I am Helene and my son is Chrisjan and he is 13 and has been diagnosed with Hypermobile Ehlers-Danlos Syndrome or hEDS.

I have two children, my daughter is 15 and a wonderful child. Straight A’s in school since grade one. Chrisjan has been a bit difficult. Both my children were prem babies, my daughter at 33 weeks and son at 36 weeks, due to an incompetent cervix and cervical cancer. In 2009 their father passed away from White Matter Disease (early onset Alzheimers).
Screen Shot 2017-05-30 at 5.10.29 PM
We moved to Durban so I could work and have my children taken care of. In early 2011 Chrisjan showed signs of ADHD and we had him assessed and it was confirmed. He is on medication for ADHD and depression as well as Sleep Disorder. In 2015 just after I remarried I had to stop working as Chrisjan struggled a lot with eating and muscle wastage. Due to not having medical aid, we turned to the government hospitals for help where they did all the tests you could think of, from MRI to EEG, ECG to numerous blood tests, and we found out November 2016 he has EDS.
He has been stopped from playing all sport in 2015 already and he loves his sport so much. In October 2016 my husband had a seizure and was paralysed on his left side. He lost his work due to it, at least he can walk now but He has a heart condition which is still under investigation and has been diagnosed with Functional Neurological Disorder. I have been looking for work but it has not been easy.
Screen Shot 2017-05-30 at 5.23.41 PM
Chrisjan also has a small heart (equivalent to a 7-year-old) and struggles some days in simple tasks. He has twice hurt himself where he needed stitches, once in his index finger (for this he had to undergo anaesthetic) and once he cut his left palm.
Amidst all that, my son is a happy and content child. We have now started investigating into why he is unable to eat properly and is severely underweight. He only weighs 30 kg. He walks around with a bit of difficulty, his left knee is aching a lot as they said the cushion is worn through.  His right ring finger is in a bent position, and he cannot straighten it which causes problems when he writes. His right shoulder blade in severely malformed and it is shorter than the left. I am at the point where I do not allow him to walk without a T-shirt as I cannot bear looking at him and counting all his protruding bones.
He is brave as he seldom asks for painkillers, only when he has a migraine. Puberty has not hit him yet which is what I am afraid of in the near future.
And that is our story on a short end. “
Thanks Helene so much for your story!

img_3636If you would like me to share your story with any chronic illness please email me on:

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