The Spoonie life is a hard life – no matter if it’s Multiple Chemical Sensitivity or Chronic Fatigue Syndrome or Lyme Disease or Chronic Pain, having a condition that severely limits your mental and physical capacity is all sorts of devastating. It’s also financially devastating because being unable to work generally diminishes your income to somewhere between nothing and whatever government pension is available to you. (Assuming you live somewhere lovely like Australia, where getting onto the disability pension doesn’t include hiring a lawyer)
Still, living on a limited income doesn’t mean I can’t dream, and with assistance from my parents I even have a few of these quality-of-life enhancing babies!
MCS is one of the reasons I have so much fatigue – The IQair Healthpro 250 is a great air filter that gets rid of the VOCs I’m sensitive to as well as dust and mould. I use it in the bedroom at night and reducing my exposure in this way has helped me improve. Any sort of air filter will be useful, but the absolute King of air filtration is a system that you can hook up to your ducted air system like this one from IQair.
If Santa ever wins the lottery he can deliver one of these straight to my door. Infra-red heat is divine on a bad fibro day, and saunas are one of the few proven ways to help your body detox. Quality is really important in a sauna though, as some models use glues or wood preservatives that give off toxic VOCs. One idea that I love is a half-body sauna which means you can do some reading/computer work while in the sauna. Mmmmmmm!
There was a time when I was so ill that any driving was out of the question for me, but once I got a little better I was surprised to find that driving was much easier for me than catching public transport, especially for short distances. Walking to a bus or tram stop was too far, and standing to wait for any length of time was not doable. The car meant no exposure to the elements (wind, rain, cold or heat was too much for me to deal with) and much more control over the volume of noise (sudden or sustained loud noise would trigger the dysautonomia). It also meant that I wouldn’t be close to people as I was super anxious about crowds (and the anxiety would trigger the dysautonomia) and in an emergency I could recline the chair and rest while the cavalry was called in. The downside meant that if I overestimated my energy levels I would either become stranded and unable to drive myself home (which happened a few times), or I would be behind the wheel while I was mentally and physically unfit to drive (which, I am very sorry to say also happened a few times ).
For Spoonies, if they can safely use a car, doing so is made much easier by having the following extras:
Automatic; shifting the gears and using the clutch can be too physical
Power Steering; an essential for those who tire easily
Cruise Control; This makes the long highway drives so much easier
Climate Control; seriously important for anyone with dysautonomia
Chauffeur; hey, if money was no object….
Mmmmmmm, I am lucky enough to be renting a house that has a bathtub and it is divine! The bath soothes my fibro joints and muscles and being in the water regulates my body temperature and gets the blood flowing evenly throughout my body. Especially in the winter this is a huge issue as the cold exacerbates the tendency for the dysautonomia to slow the blood flow to my hands and feet.
Home Heating and Cooling
Most Spoonies will spend most of their time in their homes. The cold makes you miserable and stiff and sore and can aggravate rheumatism or fibromyalgia. The heat is sticky and gross and creates problems if you have issues with your blood volume. Constantly being either too hot or too cold will sap you of precious energy. If you are at home 24/7 running the climate control is a huge expense, but it does make living easier.
For a while when I was living in the city I was housebound. Some days I was able to slowly walk the 20 meters to the taxi rank and catch a cab to the massage parlour two blocks away. If I had had an electric wheelchair I would have been more mobile and independent. Even just being able to wheel myself to the local park to sit in the sunshine would have made a huge difference to my life. These babies are not cheap, but they open up so much of the world.
But wait, vitamin tablets aren’t that expensive? To someone earning less than $800 a fortnight, they are. Especially when your various doctors and specialists have recommended you take a heap of them.
Specialist and Alternative Doctors Bills
The sicker you are, the less you are able to work and the less money you are able to make. But the sicker you are the more doctors you need to see and because life has a sense of humour they are also way more expensive. The Medicare safety net goes a long way to making this more affordable, but a percentage of a lot is still way more than some people can afford.
I’m really lucky – my dishwasher comes with a cooking and cuddling function! But when we were living in the city we had the real deal and it was marvelous. Stacking and unpacking a dishwasher can be arduous for some, but I found that I was able to rinse the dishes and stack it throughout the day, and sometimes even rinse and stack all the dinner dishes in one go. I could put it on every night, and then Guy would unpack it every morning. Even if you are able to do the dishes yourself, having a dishwasher would allow you to use that half hour of mild activity for something else, like yoga, or dusting, or having a coffee with friends. And if it’s your partner or carer who is stacking the dishwasher, this is something that will make life a little easier for them.