Practicalities about the road to recovery ~ or living with disability

While it's a relief to progress from the acute phase to something more normal, an under-functioning system or set of constraints can be most frustrating, especially when one looks and sounds fairly normal.  In my case I'm not well enough to be working but certainly don't need to spend my days in bed.  This is confusing, both for me as well as those I know, and living with limitations of energy and stamina has been a big challenge.  However, one does what is necessary.  And within these constraints one lives as well as one can and as creatively as possible.

As in the previous article I offer suggestions here about ways I've found to cope in case any of it is useful to others.  Since they are from my immediate experience I won't attempt to generalise.  If anyone finds any of it useful, good, if not, fine.  We all have to find our own way.

Routine and structure:
When things were at their worst I could not accept or work with any structure at all, but when things had settled down a bit I did find it helpful to have at least the gist of a routine to aim for.  Even though I never manage to stick to routines they can provide a focus which is steadying and practical, a good counterbalance to the upsets within which can seem overwhelming.  Also if I do a few practical things I have something to show for the day.

Looking passable:
When I get up I get dressed.  Wearing a dressing gown, even a good one, makes me feel frumpy if I'm in it longer than a short time, and then I have to get dressed anyway.

If I'm looking pale and shapeless I put on a little make-up even if I'm at home on my own.  Seeing my own white wan face in the mirror when I wash my hands is depressing, and a touch of make up at least makes me look a bit less dire!  

I try to keep my hair nice.  I get it cut cheaply by a local suburban hairdresser who does a simple dry cut for about half of what I would pay in town.  I do feel and look much more presentable when I get it cut. 

Housekeeping:
I always feel better when the house is clean and tidy.  Often it isn't particularly, but I do aim to keep it in at least a moderately orderly state.

I have a range of things I like to do after breakfast if I'm up to it such as clearing the kitchen bench, changing the hand towels, putting the washing though, making my bed, and straightening the living room.

I like to air the house too, weather permitting.  Not being able to get all that much exercise makes having at least a change of air in the house important.

I can see the value of doing one sort of housework each day of the week in that once one has done that particular chore, such as vacuuming the floors, one can then cheerfully ignore them until the following week.  But since I'm fairly hopeless at routine I've never achieved this.

If one aspect of housework has piled up and is too much to do in one go, I break the task down into separate achievable parts so that where ever I stop, that part is complete and put away, until I can get back to it another time.

Visitors:
I tend to be uncomfortable about visitors coming into the house if it's messy and needs a clean.  However, I've had to learn that allowing people who are important to me to call in is far more important, and it's just possible that they accept me as I am!  Anyway, it's not house inspection.

Similarly, I like to have some baking to offer.  I have to keep reminding myself that while it's nice it's not vital and it's not my job to feed people who fancy dropping in especially if I'm unwell. 

Shopping for groceries:
If I'm at least halfway organised I like to restrict this to once a week so that I know I won't have to do it again until next week.  I pay my bills at the same time.

There are short cuts which I don't use such as internet supermarket shopping.  In New Zealand Woolworths offers this service for which it charges a small delivery fee.  This charge is substantially less than it would cost for a taxi fare there and back so it can be a very worthwhile choice.

Similarly, internet and phone banking can make bill payments and related tasks fast and easy.

General economy:
A time of illness or disability is often a time when money is in short supply, so thrifty housekeeping can be essential.  I've found that often food I prepare myself or grow in the garden greatly reduces costs.  I've put some of my recipes and ideas in my Rushleigh site "The At Home Chronicle"

Second hand goods:
I have found shopping for second hand clothing and household items surprisingly successful.  We are fortunate in having two very good charity shops nearby and have done wonderfully well from them.  It's a good system: people donate things they have finished with to these charities who then sell them to raise money for their other services, so everyone wins.  We do the same with our things when we have finished them if they are still good, so we continue to contribute to these other services as well, which is great!  It can make shopping fun instead of worrying and has helped me take pleasure in the small things I've been able to do to make this place nicer and more our own.  It has also made it possible for me to dress much better than I could otherwise afford. 

Gardening:
For me gardening is an essential activity, and I often feel better for doing even a very small amount of it.  It can also help provide good fresh food.

Those who don't have gardens as such may find pleasure and economy in growing veggies in a pack of tub mix or planter box.  Good staff at garden supplies shops should be able to give simple practical advice as to how to start.

Exercise:
When we're sick exercise can be impossible or unwise, but as improvement is gradually achieved a little exercise can be satisfying and helpful.  'Sustained rhythmic exercise' seems to be the thing to aim for - if we can, to get the blood moving and the oxygen through our systems.

My state fluctuates a lot so sometimes I'm much more capable of exercising than others.  I try to get a decent leg stretch in when I can even if it's only around the block.

Yoga and tai chi have also been recommended.  Local classes and groups are relatively common and inexpensive to attend.  Simple exercise equipment such as an exercycle and stretchy band for resistance exercise can also be helpful.

Giving back:
I tend to feel awkward about asking for as well as accepting help or gifts, even if they're things that other people are simply casting off.  I was brought up to contribute to society, and don't want to be seen to be on the take, as it were, so I have a rule about this: if someone does something for me for free I find a way of giving them something back so that it's an exchange - maybe some greens from the garden, or some baking, or perhaps doing something for them that they don't have time for.  It needn't be big or match what has been given, but it is something that helps them.  That way I affirm that I'm still contributing to others and can better enjoy the plenty that has flowed my way.  And hopefully we each then feel happy about having another exchange another time.

Readers may find this book helpful:
"Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life" by Stacy and Taylor and Robert Epstein.


To go to the next article click on this link:

No comments: