Raindrops on Roses

 If absence makes the heart grow fonder, any subscribers to this blog should be head over heels in love with me by this point.  I mean, it's been over a year, and about half a pandemic (by my guesstimation) since I last even came to this blog, let alone wrote anything.  Some things have changed: we moved to a new house. Some things have not: still disabled and largely a medical mystery of comorbidities. So, fun times all around.

I'm sure you've always wondered exactly what it takes to keep a Rachel operational (with conditions, of course).  One of the first things I learned about being disabled is that it is rather expensive.  In fact, most disabled people spend an extra 27% to attain the same quality of life as a typical abled person. Add to that the fact that many disabled Americans are on a fixed or limited income (often well below poverty level) and you get a sense that our society expects disabled people to suffer if they want to stay alive.

But how about we start with some of the free things I have learned to use in order to conserve my energy and abilities.

• Stop bothering to fold fitted sheets. It takes a lot of effort, and not doing it really only results in wrinkled sheets which no one but me even sees anyway, so it's just a waste.
• Also, I don't make my bed anymore, even when I change the sheets.  This depends of the person, as some do get a sense of satisfaction or guilt if their bed isn't made every day, but that isn't me, so again, waste of limited effort, compounded by the multiple number of times I get in and out of bed in the average day. If I made my bed every time I left it, I'd never have the energy to get dressed or leave the house.
• To avoid unneccessary pain as much as possible, I try not to wear an underwire bra except on "special" occasions.  For me that is anytime I have to interact with people outside my car.  Often this means I'm wearing a sports bra or no bra at the drive through pharmacy, when I chauffer my dad to his doctors' appointments, or when I get curbside pickup of food.  Less pain, less struggle to get in to, and less layers to get sweaty.  To date, exactly no one has noticed/cared/commented.
• I've stopped holding to the idea that I need to stay awake during the day and sleep at night.  I'm lucky my responsibilities are conducive to this, but honestly, my most productive hours are usually from 9pm-4am, and there's nothing helpful about struggling to wake up before noon just to have no brain function when my work on projects is better quality if I just work later anyways.  Time is a fiction made up by abled people.
• Because I experience swelling and itching and painful skin sensations nearly daily, I've given up on jeans and any non-stretchy pants. Honestly, they are torture devices, and leggings are a true gift from God.  Dresses cover most casual to formal occations without imposing restrictions on my skin.
• My tracker app does everything I need in the free version. It's made for disabled people by disabled people and tracks everything from mood and symptoms to meds, bowel movements, and food sensitivities. The metrics are great for trying to catch any correllations beween stimuli and symptoms.

Now here's where things begin to get pricey.  I'll also add that if anyone reading this sees something they think might help them as well, feel free to reach out to me for specific product recommendations. 

• Blackout curtains help on migraine days, or when I have an off kilter sleep schedule.
• A mini fan that's battery opperated is so helpful when your body cannot regulate its own temperature.
• My body pillow that doesn't get smooshed. I couldn't sleep without it.  I've had a lot of body pillows as a side sleeper to help keep me aligned while I'm out, but this is the first where it doesn't go flat after being used a while.
• Cotton sheets are great for my frequent night sweats that soak everything and I wake up in a puddle.  They dry quickly and are easy to care for and soft.
• I use a 2 level lazy susan, normally used for spices or in pantries, to contain and organize all my meds on my dresser top. 
• I love my kindle paperwhite! It lets me get books from the public library without leaving home, and the eink display doesn't trigger migraines like tablets, computers, and tvs.
• Noise cancelling headphones are great when mid-migraine, travelling, or when household machines are over-stimulating my senses.
• If you have any bowel issues, biodegradable wipes or a bidet is a lifesaver!
• I have an "ice helmet" which is actually a fabric hood that snugs over my head and neck with pockets all over with corresponding ice packs. It makes it easy to get cooling relief held at all the right points to help with migraines wheather standing, sitting, or laying down.
• Conversely, rice packs are great to microwave and apply to stiff joints and sore muscles, especially my spine.
• Google smart home devices allow me to control noises, lighting, and communication while incapacitated. Eventually I hope to expand to also being able to see visitors and answer the door with such devices as well for days I can't do stairs and need to let someone in to help.
• When travelling, going to church retreats, or camping I am not human enough if I don't take my air mattress.
• I keep an ergonomic seat cushion in the back of the car for use anywhere I have a long sit on a hard surface. Restaurants, DMVs, and plenty of other places have really terrible seating options for people with spine or hip issues.
• Sometimes, especially if I'm with others who won't be quite as concise as I try to be, I take a rollator (4 wheeled walker with a seat) so that I can lean on it to help with back pain, or sit in it if feeling like I'm going to pass out.  Otherwise, there's never a chair when you really need one.
• Shower chairs have been a relavatory experience for me.  I can finally get through an entire shower without vision loss, passing out, or having to skip things or rush. I mean, it still has to be a cold shower because even a chair can't prevent those things in a steamy environment.
• When I can't shower (which is 6/7ths of my days) dry shampoo and body cleansing wipes are crucial to maintaining my dignity. I'm so glad that gym people caused such market demand for these products so that there are now a ton of options.

There are also plenty of things that help that my money can't buy.  I mean, some things are priceless, but others are totally purchasable, I'm just poor.

• Supportive family. Can't buy this. Sadly, many many disabled people are trapped and beholden to family or spouses that abuse them simply because it's a hard crime to catch when someone is homebound and too dependent on assistance to leave such circumstances.  I'm so fortunate that my family is so good to me, and also that they have the means to help care for me monetarily as well.  These last 6 years would have been impossible without them, and I'd have likely lost medical aid and been homeless.
• My family has also provided a home where I have autonomy in my own little appartment upstairs. The best part of this is that my area is on a separate thermostat then theirs, since I typically have to keep it about 4 degrees colder than they like.
• They are also gracious enough (and this is for their benefit as well) to hire cleaning service for the whole house.  When I had to do the cleaning for myself in the past, I was ususally faced with either living in a dirty environment (which effects mental health) or managing to cook a meal for myself that day.  Needless to say, cooking usually won out, and the dishes piled up, the floors got dirty, and I would just buy more underwear when I wasn't able to do laundry.  
• Meals are still a struggle for me, so I depend on family meals and frozen options if I want to eat more than once a day.
• Car access is also something my family provides for me. I couldn't manage to afford the alternatives just to get to my medical appointments if I didn't have private transportation.  Although it hurts to use a car, I am able to do things that contribute to helping my family (picking up groceries, chauffering dad, etc) and get all over the county for my medical stuff.  When you have 12+ medical things in a single month on the regular, Uber costs would be astronomical.

So there you go: my favorite things. The things that keep my life bearable pretty much take a village to provide. This is why mutual aid networks are so common among disabled community. When we have funds, we help one another directly, and they help us in their turn.

Until the next blog post inspiration strikes, I'm working on finishing up a program to start offering education and access assesments to churches through my newest venture called Faithful Access. It's a business model I am able to take on at my own speed, so that's helpful.  The need is vital, as churches are exempt from the Americans with Disabilities Act in the United States.  I probably won't be self supporting with this, but it will help cover some other medical accomodations that could be added to the list above.

Edit: I completely forgot about compression socks (some even with ice inserts) for swollen feet and ankles, and my rash guard, which I wear anytime I'm in the sun to prevent hives.