Saturday 21 September 2013

Speak words hard: Conversations with Dysautonomia.

Talk. Talk. Talk. My working life revolved around talking. I talked with patients. I talked with patients' families. I talked with other staff. I talked in team meetings. On the phone to GPs. On the phone to various rehabilitation and care agencies. I presented Grand Rounds and gave regular inservices. I said my piece in working groups and at length of stay meetings. I spoke with lawyers and tribunal members. Over the years I won awards for my case study and conference presentations. Even back in my school days, I was always picked to read aloud in class and was HD all the way for oral reports. Frankly, if there was an event for talking at the Olympics, I'd have pretty much been going for Gold.

But now.

For someone who was so highly verbal before I became ill, I am pretty much mute.

Talking is exhausting. Physically and mentally.

And I avoid it like the plague.

Back in my working days I understood this, at least in the way it related to my patients. When patients came in who'd suffered a severe brain injury we would minimise visitors, sometimes down to one person each day, for only a couple of minutes at a time. Everything would be done in short, sharp bursts. It was recognised that excessive stimulation, even from well intentioned loved ones, was too much. Requiring a patient to respond to simple questions such as "do you want a drink?", or "are you in pain?" could be too much and set them back for days.

Sometimes, even months after an injury, I would help patients and their families, structure interactions to minimise how much they'd be required to talk. Even my sessions would be restricted to 5 or 10 minutes depending on the patient's limits. And you could see as a session went on, the patient would begin to fade (and not just thanks to my scintillating conversational skills). Their shoulders would start to slump. Their eyes would get heavy, they'd begin to glaze over. Even their facial muscles would start to droop.

I often wonder if that is how I now look?

The level of exhaustion from simply conversing can be overwhelming. It can drain you to the very core. To the point where you don't even have the energy or wherewithal to say, "STOP".

I realise now, even the best, and most well intentioned clinicians, cannot fully understand this and other illness related issues, unless they too have experienced them. Fatigue, is just a word. A descriptor used in rehabilitation and medical settings. Intellectually you can understand it. You can write it down in a file or in a report and other clinicians understand what you are talking about. You can identify triggers and design a protocol to help a patient manage. You can even conduct an education session for ward staff on the topic. But you can never fully understand what it feels like to live with it, day-in and day-out. That's not a criticism. It's just a simple fact. And something that I now appreciate having been on both sides of the desk.

The physical exhaustion associated with speaking is ironically hard to articulate, and often even harder for others to understand. That what they still take for granted, is just so difficult for us now.

Long conversations. Conversations with more than one person. Conversations in loud or busy places. Conversations standing up. Conversations whilst I am trying to do something else. Or, the dreaded phone call. All can leave me exhausted.

Physically, I now find my facial muscles tire easily. They become sore and uncoordinated, even on a good day. I end up slurring my words, or having to stop and physically force my muscles to coordinate. I have trouble maintaining my gaze and have to repeatedly look away, which I know must come across as rude, or at least a tad weird. And afterwards, my face hurts from the strain of making the movements.

And mentally. Good or bad day, the only difference is how long I can last. Actively listening and communicating is difficult at the best of times. My attention span is short and the amount of time I can concentrate and the amount of information I can process, is substantially reduced, thanks to that pesky cerebral perfusion issue. Trying to make sense of what a person is actually saying or asking, and then forming a coherent answer in response, is up there with String Theory some days. I have difficulties finding the words I want, or I say wrong words. Or if I am truly exhausted it can be complete nonsense or a seemingly complete hodgepodge of words, that is known as word salad. Trying to simultaneously integrate body language and facial expression, and it is almost as if the whole that is normal communication, is broken down into its disparate parts and I am continually trying to sew it all back together, only to have the initial thread start to come loose again.

Believe you me. You haven't felt like an absolute top parent until you've yelled repeatedly at your son for bringing you a spoon, when you keep asking him to bring you a fork, only to suddenly realise you've been saying spoon all along.

Then there is the fun of trying to tune out competing information in the form of other people or background noise, eg a TV, yelling kids, or other people talking, which can be not only challenging, but once again exhausting.

And if you add in fatigue, medication effects, anxiety (because you get stressed knowing that you will have to talk and may stuff it up), if you are more ill than normal, or dealing with the flu etc talking becomes yet another Herculean task in the day.

And the phone. Don't get me started on the phone. I am not sure what it is, but it is one of the hardest forms of communication for me. Maybe it's the lack of social cues, the lack of anchoring and context (ie it's just words in isolation), the fact that it strips bare the one area where I am most self-conscious. I'm not sure. But I am sure I hate it and avoid it at all costs.

And my inability to communicate.

My inability to do the simplest of tasks.

A task which was once my forte.

Frustrates me no end.


I feel embarrassed.

Give me writing any day. No one sees my first drafts, my uncoordinated sausage fingers, or the initial lack of joining words and punctuation. I can revise and edit to my hearts content. Or until I get too exhausted, have minimised my grammatical and spelling abominations to a manageable level and am pretty much meh about it all. But talk? I'd rather have a rectal exam by that meth-addled lemur on a unicycle.

Speak words hard. Mowf truffles bad.

Michelle :)

I couldn't go past a little Bee Jees, for today's musical interlude.


  1. I couldn't have said it better... literally, I can't form sentences most of the time. However I too can write with much redo of the draft. I have a blog on POTS, Fibro,Chronic Fatigue and life in general and I find that is the only way to truly communicate now. The really bad part is I work full time in Communications, yep .. Im a 911 Director. Thank God it's an office position, and I'm not on the phone with those poor folks in an emergency. The other day I had to speak in front of the Board of Directors and it was a big heaping bowl of word salad..they stared at me like I had a lobster on my head! Love you , love your blog. Please visit my blog at

    1. Oh lordy, I'd panic if I had to work in communications, let alone talk in front of the board of directors. Go you, Judy! Thank goodness for writing. No one sees those first drafts thankfully and you can leave it and go back later to fix it up. Happy to do that most days but not the dreaded talking :).
      PS when I have some free time on the weekend I'll check out your blog. :)

  2. Speaking seems to be dehydrating, as well. Anytime I need to have a long conversation with someone, I'd better have a huge drink in my hand or I'm not going to make it. Might also be the additional stress of maintaining a socially acceptable posture. If I'm speaking with friends and family, I often "perch" on a hard chair rather than sit up straight. That is, my feet (the front half) are on the chair and I'm sitting on my ankles. Looks decidedly eccentric, but I can keep more blood in my head that way!

    1. YES it is dehydrating. I find my mouth gets really dry and I need to guzzle water after a conversation. Sitting up does also make it worse. I'm a percher too. And a leaner and yep it looks a bit weird at times, but a girl's, gotta do what a girl's gotta do some days :)

  3. Oh yes, part of the exhaustion is stringing together the reply in my head, by which time the questioner is looking at me quizically, either concerned if it is Mr Patient, incase I am about to keel over, or impatient if it mostly anyone else, who seems to think the lack of response is me being ignorant! Ho hum, ho hum isn't dysautonomia fun? No it bloody isn't! Wishing a miracle cure for you Michelle, in lieu of that scoff as many macarons as you can fit in xx

    1. Once more the internet explains what is happening when I am asked a question and my brain can't register and remember what it was to give a proper reply--- so I give a reply which doesn't answer the Question--this happens mostly, when there is too much info being taken in that I have to process before replying .I send you a big hug for today Michelle

    2. Macarons all round Tricia, or baked good of your choice. Those who don't know us do tend to look perplexed or impatient when we can't talk. Mr Grumpy and the boys get it, as does my best friend, but that's about it. Thank goodness for people who can understand my "thingie" conversations xx

    3. Hi Anon. I hate it when I have totally missed the question or topic and give a completely wrong answer, and you can see the other person looking at you with their "do you think she's on meth? look". I notice it's worse, as you say when there's a lot of information, or if I am in a group. Big hugs to you too xx

    4. Finally someone other than my husband understands how difficult and exhausting it is to talk. I have tried to explain it to "normal people " ,but they just look at me as if I was crazy. After all talking takes little or no effort for them.
      I both look forward and dread family get togethers. The noise is exhausting and trying to communicate in an intelligent manner is almost impossible, and sometimes is impossible.
      Attending appointments to maintain my benefits from the last car accident I was in are torture. Most of the appointments are an hour and a half to three hours away from home. The car ride there is torture. Most of the appointments start late, probably part of their strategy or test. I feel like a blithering idiot. I may not be able to communicate effectively but I can remember what I said and what was said to me.
      You have expressed my feelings better than I could have. Thank you.

  4. I'm so glad to have found this blog. I was looking for something to help explain to friends and family why talking on the phone is so hard. Thank you a million. And thanks for 'Bob'. I've used 'Dys'.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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