Does She Take Sugar?

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I am unwell.  Not the kind of unwell that comes with sneezes or spots or buckets of sick, but that general sort of unwell that doesn’t really have any particular symptoms, apart from generally feeling quite crap.  This is known in common parlance as being “a bit under the weather” or “washed out,” and in medical terms I think it is called malaise.  It’s the kind of thing that, were I the kind of person that ever goes to doctors, would probably result in me being sent for blood tests that would all come back inconclusive.  I don’t really know what feels wrong, except that something doesn’t feel right.

For clarity (or should that be confusion?), I ought to point out that this feeling of “something isn’t quite right” could mean I’m very tired, or it could mean I’m coming down with the flu, or I suppose it could potentially mean I’ve got something hideous like blood poisoning.  Most other people, so I’m led to believe, tend to know what feels wrong with them, even when they don’t have any visible signs like a rash or a cough.  I, on the other hand, consistently have trouble distinguishing between a sore knee, a bit of a cold and raging toothache.  For some reason, I just don’t seem to be able to read the signals from my own body.

As if that weren’t bad enough, I also struggle to distinguish illness from other bodily sensations, like emotion, hunger or even just needing to pee.  All of these signals seem to land in my brain as the same muzzy feeling of something being a bit ‘off.’  I quite often report to my friend that I feel ill, or sad, or hungry; but to be honest, they all feel the same to me, and I’m really just playing roulette and choosing the word that might be right, rather than having any sense of which one it actually is.

So why, you might be wondering, can I say with certainly that I’m unwell?  Why not hungry or sad or anxious or premenstrual?

It’s because I’m taking sugar in my tea.

Yeah, I don’t understand it either.  But sometimes (maybe twice or three times a year), I’ll just go suddenly from not taking any sugar in my tea to taking three heaped spoonfuls.  At any other time, nothing in the world could entice me into drinking sweet tea; but then, all of a sudden, something completely changes, and it seems as impossible to drink tea without sugar as it normally is to drink it with sugar.  When I’m in the sugar phase, I literally cannot imagine taking my tea without sugar, any more than I can imagine what it would be like to be a dinosaur or a fish.

This has been going on for a number of years, but up until recently, I never have been able to work out what it meant. (Who says autistics are good at pattern recognition?)  It was my friend who finally spotted that my sudden cries of “But I always take three sugars!” often happened a day or two before I came down with a nasty cold or collapsed into that level of fatigue that actually makes it impossible to get out of bed or use my brain in any meaningful way.

I’d love to know whether there’s actually any biological basis for my sudden need for sugar, in the same way that pregnant women often crave the food items which will give them exactly nutrients they need.  As a general rule, I don’t really experience hunger, and my default position is that the thought of all food turns my stomach, so the only times I take the initiative to eat without being prompted are when I have a strong craving for something or the other.  But the sugar thing is different – I never actually crave sweet tea; but if I’m given a cup of tea while I’m in this phase, then I literally cannot drink it without three sugars.  Whenever this happens, I’m always reminded of that old fashioned idea that if someone has had a shock or a grief, you should give them hot sweet tea.  As far as I can tell, everyone now thinks this is complete rubbish; but I wonder whether our grannies weren’t onto something after all.

I realise that it’s not exactly healthy to take three sugars in your tea (especially if you drink as much tea as I do); but now that I’ve got wise to what it means, I’m very grateful for this warning system, which tells me that something is going on which is a bit more than just being a bit tired or sad or hungry.  I now know that when the sugar thing happens, I need to cancel all my non-essential appointments and spend the day in my PJs if possible, because I am (or am about to be) really not very well.

Musing on the sugar thing reminded me that there used to be a BBC radio programme about disability called “Does he take sugar?”  The title was a wry reference to the way abled people often equate disability with incapacity and address their questions to a disabled person’s companion or carer rather than to the person themselves.  This attitude was, of course, extremely prevalent in the late seventies when the programme first started, but it’s not a whole lot better today.  A few years ago, I ended up having to use a wheelchair for a little while, and I was genuinely amazed and appalled by the number of people who simply talked over my head, literally and metaphorically.  But there is also a little irony for me in the title, because although I’m perfectly able to answer questions about vertical eschatology or Early Modern attitudes to witchcraft, questions like “what do you want for lunch?” and “are you in pain?” leave me genuinely stumped.  I actually do need somebody else to tell me that I’ve got a headache or that I’m feeling a bit blue.

Book learning, I get.  Physical sensations, not so much.  In fact, the only thing I really know for certain is that today, I definitely do take sugar.

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11 thoughts on “Does She Take Sugar?

  1. I’ve only been diagnosed with “high functioning autism” this year at 34 and am still learning what it means, reading this struck home more than I imagined it would. My whole life I have patterns where I can easily forget to eat or drink because I don’t think or notice or feel hungry or thirst, I’m constantly dehydrated because of this. In 2005 I was diagnosed with fibromyalgia because there’s always seem to be something but no rational medical reason most of the time, now that I’ve learned this, it makes me wonder if I have fibromyalgia at all, especially where the diagnosis is by elimination and not tests

    Liked by 1 person

    • Bigger On The Inside

      I don’t know much (well, anything, really) about fibromyalgia; but I do recognise the pattern of forgetting to eat or drink. I think that’s quite a common thing among autistic people. I know some folks set reminders or alarms on their phones to help them remember to have lunch or even just have a glass of water. Some people even use apps like Todoist to help with this. That might be worth a try, if you haven’t done so already.
      A lot of people, especially women, seem to arrive at a diagnosis of autism only after a number of misdiagnoses or not-quite-accurate diagnoses, so you shouldn’t be afraid to do some more exploration and questioning.

      Liked by 1 person

  2. So once you realise that you are not well, or something not quite right, how them do you determine what is specifically wrong so that you can do something about it?
    This interests me because my 9 year old daughter is non-verbal autistic. There have been times when she’s been very upset and I’ve come to the conclusion that she must be in pain but she isn’t indicating in any way what or where she is hurting…. not even by putting her hands near the injured area, when o
    nce she had screamed for hours, wouldn’t let me look ams I couldn’t see anything and I thought she might have a headache but then a day or so later in the shower I caught a glimpse of a healing scab wound hidden under arm above elbow. I have assumed since then that she was hiding it from me but also consciously ignoring it herself. ….. Now after reading your article I’m not sure if she even knew herself what was wrong.

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    • Bigger On The Inside

      That’s a good question! Usually I need someone else to help me figure it out, and sometimes I just try and fix the most likely problems by a process of elimination (eat something, go for a sleep, take a couple of paracetamol, hope for the best…).

      I think it’s really unlikely that your daughter was trying to hide her injury from you or ignore it herself. We do often have wonky perception when it comes to what’s going on with our own bodies, and there are numerous stories of autistic people who’ve walked around for days or weeks with broken bones or raging kidney infections and just not noticed (or not been able to tell exactly what the problem was). Sometimes we zone in on some peripheral issue – I once had two fractures and a dislocated shoulder, and told the hospital doctor that my main problem was a slight graze on my foot. It’s possible that what was bothering your daughter was feeling a bit sick or a general feeling of “yuck,” and she hadn’t really noticed the arm injury at all. Also, sometimes sensory overwhelm can send us into meltdown, and then it really is impossible to say what’s wrong, except “EVERYTHING! MAKE IT ALL STOP NOW!” It sounds to me as if this might be what was going on with your daughter – and I really feel for both of you, because that’s not a nice situation for either of you.

      I’m probably telling you stuff you already know, but in your shoes, I’d have a mental checklist to go through whenever she seems upset, based on what you know of her likes and dislikes. Sensory stuff is always the most likely culprit (is the light too bright? Is there anything fragranced which might be causing her distress?). Next I’d probably try and work out what has gone on that day which might just have overloaded her. If none of that seems to fit, then you’re left with the difficult stuff like headaches and tummy aches. There are no easy ways round those kind of things, but you might find as she gets older that you start recognising very subtle clues. I hardly ever know when I have a headache, but my friend almost always spots it – I think I do something with my eyes, like squint a bit.
      Lastly (and again, you probably already know this), if your daughter uses some form of communication like Makaton signing or picsims, it’s worth making sure that she knows (and/or has access to) the means to tell you that she’s feeling ill or hurt. I’m usually verbal (some might say, too verbal!) but if I’m ill, I quite often lose my words. In those situations, being able to sign to my friend that I feel ill or my arm hurts is really useful – and having the “vocab” for it has somehow helped me to be a bit more discerning about what’s wrong.

      Sorry, I’ve gone on a bit. I hope some of that is helpful. Your daughter is really blessed to have a mum who takes the time and effort to try and understand her on her own terms. Thanks for being a great parent and ally!

      Liked by 1 person

  3. It took me 15 years to get diagnosed with my most recent autoimmune disorder, in part because I couldn’t clarify my symptoms except to say that I had pain. I didn’t even realize that I was sick for the longest time. Thanks for addressing this.

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    • Bigger On The Inside

      I relate! I’m glad things are moving in the right direction for you now. Thanks for reading and commenting.

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  4. I just had to say that my youngest daughter has this issue. Since she was tiny, I had no idea if she felt sick until it became visibly obvious (throwing up or coughing or spots…whatever). She could get hurt in terrible ways (slipping off a chair at the table, bashing her chin so hard she split the skin, and not crying), and it always alarmed me when she didn’t cry. That main clue for pain was simply not there. When she was in first grade, I went to get her after school, and her teacher started apologizing. “I didn’t know. I had no idea. I just touched her, and she is burning with fever.” When I got her home, her temp was over 104 F. This kid had said nothing. Her teacher felt guilty. I felt guilty. And she ran around like she wasn’t even sick. Over time, she has started to connect some dots. When her throat feels funny, she is about the throw up. However, she still can’t distinguish abdominal pain. She might have a stomach virus, or she might just need to use the toilet. It is always a guessing game. Just two months ago, everyone in our family had the flu, but she wasn’t complaining. She was happily on the computer, playing Minecraft. However, her behavior is usually the most revealing clue to impending illness. She may be more emotional or reactive, and she just wasn’t acting like herself. Just in case, I had her tested for flu…and she was POSITIVE for flu. Not that I am happy that you can’t know these things in your personal experience, but there is a comfort in knowing others experience this. She is on the spectrum, has lots of anxiety, and some pretty intense OCD. She is highly verbal and the vocabulary to explain just about anything…except what she is feeling in her own body. Come to think of it, my husband sometimes has this problem. And he is ASD, too. I wonder if this issue has a name of its own, medically?

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    • If you ever find out please let me know. The only similar descriptions I have found so far come from abused and/or neglected people who were not fed, clothed, supported asf properly. Since their care givers did send the clear message their discomfort does not matter and might even be punished they lost the feeling for these sorts of things. I’m not saying you did the same to your kid. Who knows where it comes from. You certainly better than I. But maybe your daughter might benefit from the same things that the people I described above benefit from? Kind regards 🙂

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      • Bigger On The Inside

        Sorry it’s taken me a few days to approve and reply to your comments – Holy Week and Easter kind of got in the way…

        There is an official term for not being able to recognise your own emotions; it’s called Alexithymia, and it affects a lot of autistic people (and, I think, some non-autistic people too). But more generally, the term for being able to read the signals for your own body is known as Interoception; and, as with other sensory processing, autistic people often have wonky perception in this regard. Musings of an Aspie has a good little summary here: http://musingsofanaspie.com/2013/07/03/interoception-how-do-i-feel/

        I think it is different from the ‘learned helplessness’ or dissociation you describe in survivors of abuse or neglect, because for those folks it’s a survival mechanism they have employed (albeit unconsciously), whereas for autistic people it seems to be just the way we’re wired. But I don’t claim to be an expert, so I could be wrong – and I dare say that there is a bit of overlap somewhere along the line, not least because autistic people are more likely than others to have been victims of abuse, neglect or bullying. I think it’s certainly true that we grow so used to the world being uncomfortable (bright lights, loud noises, scratchy clothing) that we probably become a bit desensitised to our own bodily feedback. It’s also true that sometimes we just get engrossed in other things and forget to listen to our own bodies until they are virtually screaming at us. But I think there is something more fundamental going on as well, so I’m fairly sure hardwiring plays a part somewhere.

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  5. I have trouble with hunger recognition as well. I also do not usually know how I feel and I have next to no memory of my life. It’s a little different than from what you describe but not too much. I’m always happy to realise there are other people struggling with such things. Like you any high minded topic is just fine, even if its one that is not my forte but what do you mean have you ever visited this city and how are you? how would I know?

    Thank you for this blog post! I have a suspicion sugar gives your immune system energy to battle the oncoming foe better. Just a guess in the dark but I normally have ideas that go into the general direction of where you would need to search. Usually our grannies have been much more spot on then we want to give them credit for. Especially if our bodies agree with their recommendations. Never heard of the tea with sugar thing before tho. Now I’m off to drink my unsweetened tea.

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  6. […] Does she take sugar? (Tardistic blog). Interesting observations about difficulties in identifying if and how she is ill, or the differences between illness, hunger, emotion etc. In her case, craving sugar in her tea, where she usually wouldn’t have any, is indicative of imminent illness. I have read several other accounts where small behavioural changes are often the only hint about autistic people becoming ill, which is very helpful to know! […]

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