Entertaining dysphasia/aphasia in Fibromyalgia/cfs/ME/dyautonomia POTS – “Shambles”

One of the more entertaining symptoms of “Shambles” the name I have given my disease, is dysphasia. That is slow, slurred speech, word block and the most bizarre word replacements. This is quite entertaining to the kids, and I have a laugh too – because it is funny, but it’s also annoying and at times down right embarrassing.

Post-wedding crash has not been nearly as bad as I was expecting. I had planned for it so there’s been no home ed this week. However the children soon find stuff to do and I am pleased to see how much they read. But I am shattered and could in no way hope to home ed this week.

Back to my entertaining aphasia. I caused great hilarity in asking Roni to fetch my “homing device” when I meant mobile phone. No, I don’t know where “homing device” came from.

My default word seems to be “dishwasher” for some reason and as I try and correct it I can come out with all sorts of gibberish.  The dishwasher meanwhile got called “the disappearing box” for some unknown reason, while a kitchen is a pilchard house.

I had a whole list of bizarre and unheard of words for a watering can.

I don’t have problems understanding other people even when I’m really shattered but producing coherent language can be a right challenge at times. It’s a not often noted symptom of “shambles” but there are a lot of people who report having it. High res SPECT scans and high res fMRIs are showing more and more that Fibro and ME brains have some odd damage and lesions in unexpected places. It is not the same as MS but very similar.

Along with the word confusion, gibberish, slurring and just word block comes the short term memory problems. In a bizarre twist yesterday while I couldn’t come up with the word “watering can” I had technical language to do with theology rolling off my tongue without a problem. Even I was taken aback with that wondering how I was so fluent in something probably more difficult and couldn’t name a garden tool!

I can go for days speaking perfectly ok but in a crash or when I’m just tried it can quickly go to pot. Slurring, just running out of words and giving up. I do think things have been worse over the last month and I suspect I had something like a TIA about a month ago; so it could be that. Who knows? I don’t.

While the symptom is pretty ubiquitous among both the ME community and Dysautonomia lot, I can’t find any specific research on what the root cause is. Most people either get the brush off from medics or a “nothing we can do” response.

I am one of the lucky ones. I don’t think many people care less whether I sound daft or not – which is a blessed relief. Some of my kids, and even my lovely new daughter-in-law are amazingly good at translating so it doesn’tget too frustrating.  But also, I’ve reached that point with “shambles” where frankly I can’t help what anyone thinks of my weirdness, whether it’s twitching and jerking, keeling over, or my neologistic miscues. I can’t control my “shambles” so I am learning to live with it. I hope others are learning to live with it too. My poor ol’family certainly have no choice.

I don’t really have any advice for those of you reading this because you struggle with it too. The only thing I can say is, laugh a lot. Don’t let the thing upset you. And have pen and paper at hand. Sometimes I can type things I can’t say – weirder and weirder but it’s true.  Word block isn’t helped by typing but I don’t often get word confusion, or at least not as badly when I type.

And remember, you’re not alone in blurble-flurble-dingbat-undermender.


2 responses to “Entertaining dysphasia/aphasia in Fibromyalgia/cfs/ME/dyautonomia POTS – “Shambles”

  1. jackiewriting

    After reading this I actually find myself wishing I was funnier than I am with my words – I only do boring things like say “I must go and get a fire for that bar” meaning a new element for our living-room heater.. Still got a laugh from my girls though! I have ME after meningitis, and am pacing now, so things like short term memory and speech problems are getting easier.. but even so, when tired, I find it difficult and sometimes almost impossible to ‘take in’ what someone is trying to say to me, and even harder to put what I want to say into words. You’re right though – laughter is our best medicine 😀

    • I think we have to laugh sometimes – the disease is absurd. Also I think it’s good for our families to be able to laugh at our strange little ways; living with someone chronically ill must be hard work for them at times.

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