Frequently Asked Questions

But you look ok, and seem to act alright in social situations and at work

 

The reply to ‘But you look ok, and seem to act alright in social situations and at work’ is something told in confidence, and often publicly by those with autoimmune illnesses (which is a component of certain cfs subtypes) – and that is threefold:

 

We have so little public time available, that when we do plan for, get ready, focus, pick up and force ourselves to go, we do our extra best to make sure it’s an outstanding experience (as much as possible) for ourselves and others (when lying in bed we dream of such outings, and realize how few we get while ill with these conditions). While out, the joy and adrenalin alcohol etc allow us to forget it for a moment (though we still must pace ourselves, sitting often, watching the time knowing how staying to regular sleep is required, etc.)

 

The second part of that answer is that we have (as mentioned) planned for that event and the surge of joy or urgency helps a little, yet more importantly we have rested for at least that day (if not more) to attend and we have factored in the evening and next day or more as being ‘spent’ and exhausted (you plan on 'pay to play', so planning further the next time we can work again afterwards).

 

This is why scheduling is hard, we don’t know when we’ll be sick, preventing us for working regular jobs, and furthermore when in an episode we don’t know how long it will last. If you lived at my home you would likely be met with a disheveled Julien dragging himself across the floor looking low and irritable, short and grumpy and mostly exhausted in several ways, feeling like the flu and not a state suited for planning work. With my condition, I know that after a big exertion (such as working a full day) I will have Post Exertional Malaise (a component of cfs) and be drooping, vacuous and such for a day or two.

 

The third reason is that though it is constant, it also comes in strong episodes and waves which go for several days to weeks, months. So, when I’m feeling better I’m more public. For some there is an extra factor of threshold and tolerance where they have different reserves and means to mentally tolerate I am struck by in terms of courage, incomprehensible willpower and sometimes wish they wouldn’t have to push that way with concern about the ‘hangover’, the effects experienced afterwards.

 

Times when didn't and also from sleeping lots. Inside I can't rest until this is fixed cured or at least improved and until that is done shown to etc.

 

 

                1) But you look ok, and seem to act alright in social situations and at work

 

                2) What's it feel like for other patients?

 

                3) Haven’t you seen doctors to help with this? What do they prescribe?

 

                4) You keep changing your mind about what you have, are you a hypochondriac?

 

                5) What does it feel like for me?

 

                6) What are you doing about it?

 

                7) What's it like for friends and family?