The MSGym founder, who fronts all of their videos, talks about ‘the neural edge’. It’s the point at which an MS person just can’t process any more,  and has to retreat to their safe place. That might be home, it may be bed, sleep … whatever it takes, for as long as it takes to regain equilibrum. Call it the neural edge, call it brain fog, that feeling of being overwhelmed, unable to think, hazy, it’s very real. I have to do some reading to determine the physiological reasons, but I suspect it’s to do with the inflammation of the central nervous system due to the attacking immune B and T cells. If there’s endemic micro-inflammation ( the theory Dr Federenko ascribes to ) this will impact all the central nervous system, the nerves are then unable to transmit information as efficiently, hence our processing capacity is heavily impacted.

The other analogy I have heard is the ‘spoons’ analogy. See below for the link, and it’s so accurate. To summarise, those who have no illness or issue have an unlimited supply of spoons. Those of us with an illness ( and I mean physical or mental, both equally impacted) have a finite number of spoons, depending how heavily impacted we are. Every activity takes a spoon – getting up and dressed = one spoon gone; getting breakfast and coffee = one spoon; getting to work on public transport = my god before Russia that was 2 spoons, Andy drove me to work a few times. You get the message, those impacted only have a finite number of spoons, and when they are gone, they’re gone for the day. The only option to recuperate is that safe place I mentioned previously.

The Spoon Theory, by Christine Miserandino is a beautiful read. She suffers from lupus, another auto-immune disease.

Yes, I have a limited number of spoons. It’s not horrendous and a measured day of work and a light evening activity such as training or dinner – but only one activity – is quite achievable, even sustainable for a few days. Anything more and I will need to recover, for an hour or a day or a weekend. This is not optional, there’s a dark hole I’ll go down if I don’t manage the spoons. That afternoon rest in Melbourne between the exhibition and dinner in a brewery, that wasn’t optional for me.

However, I have more spoons now than before the treatment. How much of that is the treatment, and much because I’m pacing myself working part-time, I don’t know. Watch developments … but if anyone says they have no spoons left, this is what they mean, and it’s no casual joke.

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