The trouble with accepting help...

Here's one thing about asking for help as disabled person I'd like you to know: Sometimes it can be obvious that I'm struggling but I can't accept help.

There are lots of times I'm offered help that I simply don't need - but that's not what I'm talking about here. I'm talking about when I need the help but I can't accept it.

I don't mean I don't feel like it, or I don't feel able to. I mean I can't. Literally. Because accepting the help would mean me having to do things that I am too unwell to do.

When I have high fatigue and brain fog levels, I really struggle with words. Finding the right ones, putting them into sentences that communicate what I want, and then articulating them - actually getting my mouth to say them.

So when I'm really fatigued and have to do something that maybe someone else could help me with - and where help would make a big difference, that help only works if I don't have to explain what is needed. Because the explaining is beyond me. And the effort of explaining/instructing can be even more draining than carrying out the task myself.

For example: putting my wheelchair into the car. If someone else does it they often hold the removable clothes-guards so the chair drops to the ground leaving them holding plastic panels. Or they hold the wheels so the chair flips over in their hands and my stuff goes everywhere, or it's put in to the car at the wrong angle which makes it far harder for me to get out again (when I may not have anyone around to help). So for some else to do the task and actually be helpful I have to explain in detail what to do (what to hold, how to pick it up, exactly where to place it) - and what's more I have to do so so clearly and quickly that they haven't picked up the chair before I finish - and in their innocent enthusiasm found themselves standing surrounded by the contents of my handbag and various removable wheelchair parts. 

Even on a really good words day I only have a 50% success rate for giving instructions so well that my chair lands where it is needed without mishap. On a bad day: not going to happen.

So I refuse the offer of help. Because struggling through the tasks is more manageable than struggling through the explanation then having to help pick up the pieces where the explanation wasn't clear enough or the help didn't go quite as planned. This isn't limited to putting my wheelchair in the car - it can happen with all sorts of tasks where explanations or instruction is needed before someone else can do the task effectively.

If an offer for help is turned down for fog/fatigue reasons, then the most helpful thing you can do is back off - fielding questions and trying to explain my refusal is just draining my limited resources even further - and putting accepting help even further out of reach. 

But what you can do is say 'Shout if you need anything' and get on with whatever you were doing. This way if there is something I can articulate which would help - "hold this" or "close the boot" - even if it's not the main task, and might seem insignificant, it can a actually make a big difference. 

[Disclaimer: most of the time I don't struggle to put my wheelchair into the car. Because I have the technique (and chair size and style) sorted. Only when my arms or heart rate issues are particularly bad. It just happened to be a useful example]