Living in the Limbo

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Making Your Home “Chronic Illness Friendly”

Image of Emma sitting on the side of her bed with a thin nightstand holding a tissue box and pill organizer. Beside her nightstand is an IV pole holding her TPN backpack. Underneath the nightstand is a small trashcan and SHARPS container.

*I am not sponsored by any of the brands of the products mentioned in this article.

Ultimately each person’s home is their own and the way that they chose to make it most accessible to them is a personal choice.

 

I am choosing to highlight some things I’ve done in my home to make it more accessible for me and my conditions.

 

I learned these tips through trial and error plus time of figuring out better ways to do things to make it easier and more comfortable to live in my apartment.

 

Disclaimer: I am very fortunate that my apartment happens to be a smart home and ADA compliant which allows me to move through my home more easily. However, prior to this current place- I was living in a place that was not ADA compliant so I will share some of my tips from there.

 

KEEP FRONT DOOR UNLOCKED

I know that initially reading this title might seem very frightening, but I will explain what I mean and ways you can do this safely.

 

I have learned through enough times of calling 911, that I need to keep the dead lock on the front door unlocked so the EMTs can get into my house in an emergency easier.

 

My home happens to be a smart home which means the door doesn’t use a physical key but rather a code to the door that can also be controlled by an app on the phone. This allows me to unlock my door from my phone at any time. However, if the main physical lock is on the door, even if I unlock the “code” on the door, EMTs cannot get in.

 

Therefore, I always have my door “locked” with the code but not locked with the extra physical lock.

 

If you have just physical locks, try to just lock one of them so it’s easiest for you to get to the door to unlock it in an emergency.

 

If you are able to install a smart lock or your home comes with it-I highly recommend it since if you’re in an emergency where you can’t move or get to the door, you can easily let in EMTs or other forms of help without having to move.

 

HAVE AN IV POLE NEXT TO BED

If you have any form of infusions, you likely have an IV pole by your bed already, but I’ve included this just in case because it is just so helpful. I personally use a Pitch- It #3007 IV stand which is different than the IV stand I initially was given from my supply company which was a Pitch-It Sr. IV Pole #3006.

 

I preferred this Pitch- It #3007 IV pole because it had a much smaller base which was easier to fit it next to my bed and not have it topple over from the weight of my bag. It is adjustable in height and can hold my TPN backpack which weighs around 15 pounds. I have it next to my bed for extra stability and support to the pole.

 

I only use my pole when I’m in bed (normally only for sleeping) and therefore didn’t need one with wheels but if you do want one that rolls, I’d recommend checking out other types (like the one my supply company had first given me which I listed above).

 

MAKE A MEDICAL CART

Through lots of trial and error I found it was most helpful to have a rolling medical cart with my TPN changing supplies on it along with my most commonly used medical supplies.

I got a rolling cart from Target (I found a similar one from Target because the one I bought isn’t sold anymore and I also found a similar for cheaper on Amazon) which I store all of my medical supplies on. It has a handle to help push/pull the cart from and has wheels which makes it very easy to move around the house.

 

I store my medical cart in my bedroom and roll it into my kitchen every day when I’m changing my TPN.


I also purchased different sized organizing bins from Target that hold my items neatly, so they are easy to find and store.

 

-      Narrow White Flexible Bins (I used 3)

-      Single Cup Flexible Bins (I used 4)

-      Medium Grey Plastic Weave Baskets (I used 3)

-      Medium Grey Narrow Tall Weave Basket (I used 1)

 

Then I adjusted the cart by duct taping on Velcro to hold my gloves on the side (which has become loose with a year’s time-I just haven’t fixed it) and had Velcro to also hold Clorox wipes at the bottom but the recent Clorox tub I bought is too large for the straps to hold.

 

I also have a small bag at the bottom which I store my blood pressure cuff, pulse oximeter, glucometer, thermometer, and band aids inside. It’s easy for me to just grab this bag if I’m feeling sick or weird since it’s easy to check everything if it’s all located in one place.

 

KEEP A TRASHCAN NEARBY

As a person who used to always carry around emesis bags, I got tired of having to store them in my backpack and decided to get a small trash can to place by my bedside.

 

Whenever I’m flaring or having a lot of nausea, I usually will bring the trashcan into bed and have it by my head so it’s easily accessible to me. I don’t remember where I got the trashcan from but it’s just a small waste basket that is metal and super lightweight.

 

USE SMART OUTLETS

Smart Outlets allow you to plug in anything into it and the on/off can be controlled by your phone. This is great because again, as a person who spends a lot of time immobilized when I’m flaring, it’s great to be able to turn on/off lights (from lamps) without having to get up to control them.

 

I personally use KASA Smart Plugs which I find really easy to use and the app is really clear and user-friendly.

 

HAVE CLEAR EMERGENCY PATHWAYS

I have a clear path to my front door from my bedroom but if I can sense a flare coming on, I’ll leave doors open to get to my bathroom or front door.

 

This is really helpful in flare settings but also if you end up calling 911 because they can just follow the open doors to get to you.

 

It’s also helpful that you have a clear space for a stretcher to be able to get to where you are. I typically have flares when I’m in my bedroom so I try to make sure my bedroom path to the door is open so the stretcher can get to me.

 

In my previous apartment we had bar stools in the way of my door so we learned to move those to a different area since the EMTs couldn’t get the stretcher past them.

SHOWER ITEMS

I find that having a shower chair is immensely helpful for those who fatigue easily or are unable to stand for very long. I found one with a back to the chair because I’m not able to hold myself upright when I’m fatigued so try to keep that in mind depending on what your needs are. I personally got mine from Amazon and have it linked here.

 

Having a removable shower head can also be handy if you can’t get certain parts of your body wet or prefer to use one with a shower chair. If you don’t have one with your shower head already, you can find a lot of attachments and other versions on Amazon.

 

Also, having grab bars in your shower are a great safety feature to help you get in and out of the shower. If your shower does not have any you can also find some on Amazon that you can install.

 

Lastly, for those who are either flaring or unable to get out of bed to shower, my dad and I used this inflatable bedside shower basin to wash my hair for a few months when I wasn’t able to get up. It works really well, and you just need a person/caregiver to wash your hair for you. Since it’s inflatable (it does come with a pump), it’s really easy to store when it’s deflated.

 

*I have more information on showering in my article “How to Shower With A Central Line”.

 

ADD FELT CHAIR CIRCLES TO FURNITURE

You have likely heard of these felt circles before because they are commonly used on the bottoms of chairs on hard floor to not scratch the flooring.

 

I recommend these (you can find lots of sizes on Amazon) because it helps you make your furniture easy to move. I have not just my chairs but my tables, TV stand, and benches with these felt circles so everything is easy to move on my own.

 

For my bedroom which has carpet, I have these things called Super Sliders which are put under furniture on carpet so it’s easy to slide it around on.

 

I have 4 under my bed so I can slide my bed out from my wall to more easily change the sheets when I’m doing laundry.

 

GET A DOORSTOP

A doorstopper is immensely helpful if you’re a person living alone- just in general. I use the doorstopper every week to hold open the door when I’m bringing in my TPN boxes.

 

If you’re carrying anything or need the door to be held open-this is a great item to have by the door.

 

The door stopper I use I had gotten from my roommate, but you can likely find many simple ones that also slide under the door (like a classic version) on Amazon.

 

FIND A PLACE TO STORE YOUR WHEELCHAIR SUPPLIES

If you are an ambulatory wheelchair user and sometimes need to store your wheelchair, I recommend trying to store it somewhere close to the door so it’s more readily accessible in emergencies.

 

I also store on top of it my wheelchair bag which I got from Amazon which works really well with the type of wheelchair I have. I also had gotten this bag because I didn’t feel comfortable having my TPN line attached behind me and potentially getting caught in the wheels, so I have my infusion bag in my lap.

 

HAVE A HOME YOU WANT TO BE IN!

This last one is optional, but it was the main inspiration for the way I designed the interior of my apartment; have a home that you want to spend time inside.

 

As a person who can’t go outside much, I wanted to make the inside of my home just as exciting as the outside. I only have two rooms in my apartment, but I wanted to make lots of individual spaces to sit at to be able to have different areas in my apartment with different “vibes”.

 

Having all of these unique areas makes for more options on where to be and makes the inside more enjoyable and exciting.

 

FINAL THOUGHTS

What you end up doing inside of your home will ultimately be what’s best for your body and your needs, but I hope some of these gave some ideas of things to consider for your space.

 

Also, if you want to know my tips when looking for an apartment/home be sure to read my article "Apartment Hunting For the Chronically Ill”.