"My biggest issue is finding caregivers who really understand how important it is to be detail oriented to save me energy, like making sure to put things away in the right place so I don't waste energy having to search for it. But I have found a really good caregiver and she really does understand. She has two other clients, who are both paraplegic and she says if she had to choose, she would rather have their disability than mine, because their quality of life is so much better."Sadly, most of us with ME will identify with the quality of life issue.
It has often struck me (and this is a bit of an elephant in the room, because it could seem very insensitive to say so), but that "merely" having a physical disability, whilst otherwise feeling quite well, is bound to result in a better quality of life than for those of us who have to deal with a long list of physical and neurological limitations, mobility issues and chronic pain, as well as feeling incredibly unwell, day-in-day-out, but that is so often not considered.
On a practical level though, the rest of the comment is excellent food for thought. There's really not much can be done about whole days lost looking for the item you put in the daftest place yourself, because of brain fog (did that one yesterday), but clearly a lot to be gained from organisation; having a system and a place for everything. That goes hand-in-hand with pacing.
On a practical level though, the rest of the comment is excellent food for thought. There's really not much can be done about whole days lost looking for the item you put in the daftest place yourself, because of brain fog (did that one yesterday), but clearly a lot to be gained from organisation; having a system and a place for everything. That goes hand-in-hand with pacing.
And having had carers, I can confirm that with up to three visits per day, from the same number of different carers, then the most frustrating thing is all the time and energy one spends trying to find the things that they have all put back in different places every time. There were times when both I and my husband were on the brink of saying that this one thing cancelled out any of the benefits.
Frequently, I feel that my list making and organising gets to obsession level: that someone who can scarcely manage to get out of bed, let alone out of the house (rarely for ever shorter periods) really shouldn't need organisation at the level applicable to large and complicated projects, but I seem to. It helps me to remember things, get something done in small, manageable amounts.
Even my (supportive and understanding) husband doesn't always get why it's vital for me to keep on top of things and why I persist in trying to manage to do so, when even I know that I really need to rest and NOW. So, yes, I can also see why it is going to be difficult to get caregivers to fully grasp this need.
Frequently, I feel that my list making and organising gets to obsession level: that someone who can scarcely manage to get out of bed, let alone out of the house (rarely for ever shorter periods) really shouldn't need organisation at the level applicable to large and complicated projects, but I seem to. It helps me to remember things, get something done in small, manageable amounts.
Even my (supportive and understanding) husband doesn't always get why it's vital for me to keep on top of things and why I persist in trying to manage to do so, when even I know that I really need to rest and NOW. So, yes, I can also see why it is going to be difficult to get caregivers to fully grasp this need.
But not doing things and the consequences thereof of chaos, mess and clutter (those being relative terms) are, in fact, much worse than continuing to try to keep things under control, even at a cost to current energy and the resultant post-exertional malaise. The later cost of catching up, along with additional stress of the interim nagging anxiety, would add up to so much more. I'd like it not to cost at all, but I haven't found the solution to that conundrum yet.
The natural progression from having everything in the right place so you don't have to search for it, which I discovered by bitter experience yesterday when searching for that misplaced item, is not having too much clutter through which to search. Dealing with clutter not only creates physical challenges, but it really bothers me mentally and I can now see why it will be critically important for my health, in both ways, to get this dealt with. Decluttering has to be one of my next projects to organise. Probably in painstaking, obsessive detail. <Evil grin>
