I felt cornered (to say the least) with the whole bed bound illness period. But your dealing with an additional level of challenge on that one. Again, I am amazed with your attitude in spite of such extreme adversity. ... I'm just concerned that you get this turned around before it gets worse. All the best.
Thank you, Tristen. I really appreciate all the concern and info. I feel badly at how my level of sensitivities knocks out just about all the options. It's like the hands of everyone who wants to help me are tied! And that's no fun for others to experience.
Dainty - have you tried bamboo batting? I don't know a huge amount about the MCS side of things, but as a quilter I've been noticing some of the newer battings that have emerged on the market lately. Soy is another one, no idea how that would react either.
From what I've read of bamboo, most of it on the market is actually rayon that has been made from bamboo. Rayon is created from a highly chemical process.
This page has info on the details. The Federal Trade Commission is actually
cracking down on companies for false labeling in this regard:
We need to make sure companies use proper labeling and advertising in their efforts to appeal to environmentally conscious consumers, said David C. Vladeck, Director of the agencys Bureau of Consumer Protection. Rayon is rayon, even if bamboo has been used somewhere along the line in the manufacturing process.
The FTC sued several companies last year for allegedly selling products labeled or advertised as bamboo that in reality were made of rayon. Rayon is a man-made fiber created from the cellulose found in plants and trees and processed with harsh chemicals that release hazardous air pollution. Any plant or tree including bamboo could be used as the cellulose source, but the fiber that is created is rayon.
...
Rayon, even if manufactured using cellulose from bamboo, must be described using an appropriate term recognized under the FTCs Textile Rules. . . . Failing to properly label and advertise textiles misleads consumers and runs afoul of both the Textile Rules and the FTC Act.
A few years back I looked into bamboo fabric, and while I loved the feel of the samples it wasn't something that worked for me. I haven't looked into soy, yet.
The problem I keep running into with any batting, even organic cotton batting, is that it cannot withstand the home processing required for any fibers to be tolerable to me like a fabric can. In order for a single piece of organic unbleached, undyed cotton to be tolerable for me it must go through several cycles of being boiled for days, soaked in baking soda water, soaked in vinegar, and then washed, and the process is repeated over and over and over again. After some time it's brought out to me and I'll test it, and if it causes a reaction then it has to be processed some more.
What am I reacting to in this natural fiber? Who knows. Some fabric is better than others. Some can never be processed enough to be tolerable. It's baffling. But it's the way things are for me, and since the reaction is life-threatening it isn't something I can just choose to put up with.
So since batting and stuffing can't be put through this necessary process, they're generally out of the picture for me, though it hasn't stopped us from trying it.
The latest attempt is trying samples of buckwheat hulls, millet hulls, and kapok. The last one is more of a stuffing/batting so we'll see how that goes. The hulls would make for a sort of beanbag-type setup. I used buckwheat hull pillows before my sensitivities became severe, and recently learned that quality and differences in manufacturing could account for my previous issues with it. The hope is I can tolerate one of these and we'll make a mattress - essentially a giant natural beanbag for me to sleep on. IF these samples don't work there's also cherrystones (pits) to test as a possibility.
It'll take some time, though, as even if/when we find a suitable filling the fabric to hold the mattress together needs to go through the above mentioned process, and we're just purchasing it now.
I've begun to develop a routine of rotating positions that should maximize my sores' chances of healing while still barely allowing me enough rest/sleep to keep me going without crashing. It's a delicate balance, and I did have a mini-crash where I was forced to forget about being careful with my sores for a day or two because my body's demand for rest and sleep overwhelmed every other priority. But I think I can manage these and still be okay, I'll just be a bit out of it and a little more fragile than usual until we can find a softer bedding solution.
I don't have bedsores, but I'm having problems with finding it painful to lie in bed these days and am waiting on a visit from the district nurse to discuss mattress toppers. My chemical sensitivities are at the level of fussing about toiletries, cleaning products and the like, but I think that's fairly mild. Any suggestions as to what I should get or avoid?
Avoid synthetic foam, that's about the worst one. If you're certain you don't have a latex allergy then natural latex is a very safe option, however make certian it says "100% natural latex" because labeling may say "natural latex" and still contain a fair amount of synthetic rubber made of petrochemicals.
Cotton batting that isn't organic is also a bad idea. With other textiles such as wool batting it doesn't matter nearly as much (you just want to make sure they didn't do sheep dipping or carbonization), but cotton has a very high amount of pesticides used on it. If you can wash the fabric then all measureable amounts of pesticides can be removed, but you can't exactly wash batting. Also, with cotton batting you get the potential issue of dust mites. So if you are to consider cotton batting at all, I'd recommend it be organic and you pair it with a dust mite cover. Cotton tends to lose its loft though so it isn't ideal as a topper anyway.
Wool is probably about the best you can get. It keeps its loft, conventionally has fewer chemicals (though with fabrics will depend on processing, see
here), and apparently there's no worry of dust mites. The main concern is if you're getting a sheepskin, which will be tanned with very harsh chemicals that continue to outgas and go right into your lungs. If you want the benefits of a sheepskin without the chemicals I know of at least one place that sells a fleece
woven into an organic cotton backing that should mimic the effect splendidly. I have no affiliation with that company but they helped me with samples of cotton batting a few years ago and demonstrated excellent customer service.
I
strongly recommend people get the most chemically safe option they can afford, even if their level of tolerance would allow for a compromise. One reason is that chemical sensitivities can worsen (don't I know it!) and the best way to make sure they don't is to stay as far "ahead" of them as possible. The other reason, though, is just because it's healthier to have fewer exposures to toxic chemicals, and with this condition we need to take advantage of every possible inch of health we can lay our hands on.