Speak words hard: Conversations with Dysautonomia.

(source)

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.

And,

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.

Cheers
Michelle :)

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