Thursday, 19 February 2015

The devil in the details

A comment in a recent exchange on a ME forum on Facebook attracted my interest. The person had said:
"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, many of us will certainly 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 impairment, 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 physical and neurological limitations, mobility issues and chronic pain, as well as feeling incredibly unwell, day-in-day-out (personally for over 40 years now.)

Given that, it's also no wonder we develop mental health issues as a consequence. Indeed, I should be stark-raving-bonkers by now and I'm sure I'll find plenty of volunteers who'll suggest that I am! 

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, 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.

Frequently, I feel that my list making and organising gets to obsession level: that someone who can scarcely manage to get out of bed quite often, let alone out of the house (only a couple of times a week for ever shorter periods) really shouldn't need organisation at the level of a multi-million pound corporation involved in large and complicated projects, but I seem to do.

It helps me to remember things, get something done and do it in small, manageable amounts.

Sometimes, I think that even my (unbelievably 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, really, 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 maliase. 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.

Currently, I'm using Google Calendar linked with the pro version of GQueues to manage my life using the principles of Getting Things Done: How to Achieve Stress-free Productivity (Watch How GQueues Works with GTD) from appointments, regular reminders, chores, website tasks and every small detail of life. 

Progress is always MUCH MUCH slower than I want, but I just have to work on acceptance and make myself feel that what I do is enough. (You can tell that this is most difficult part.)

But feeling as though I am in some modicum of control still makes a huge difference. 

The natural progression from having everything in the right place so you don't have to search for it, which I also discovered by bitter experience yesterday when searching for that misplaced item, is also not having too much shit junk 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

Sunday, 8 February 2015

Bournemouth Model Railway Exhibition 2015

In February, we visited the Bournemouth Model Railway Exhibition at The Hamworthy Club. Above is the port (St. Georges Quay) on one corner of the Umbridge N guage layout of The Railway Enthusiasts' Club. Set in a more modern era and far more industrial than what we have planned for the quay at Porthkeres, there are, nevertheless, some similarities in the quay's shape and design. 

The other layout I was quite taken with at this show was Hedges Hill Cutting (see images below), which has fantastic detail and conveys so much in such a small space.