Behind The Scenes: Daily & Travel Prep with EDS

There are days when it’s difficult to exist because of pain and/or brain fog. It could be an acute issue like an elbow dislocated or it could be a long term complication like the stubborn granuloma that I’ve been facing for a while now mixed with a low level Chronic Regional Pain Syndrome. It could even be the weather fronts moving and causing ambient pain. I could spend a week going into all the different possible complications, but either way, that leaves me with some days where it takes me a while to get moving. Unless you’re one of my inner circle of people that have stayed during rough moments to help me, I look like I’m handling things just fine.

So what does it look like when I need to prep for the day from my point of view?

This is what my daily regiment looks like right now. I’ve got my meds for digestion, meds for if my intestines decide to hold a stand off, meds for the anxiety and depression, meds for my hormones, more meds for my hormones, meds for pain, meds for allergies, gauze, saline, tiger balm, KT tape, TENS unit, cotton pads, bandage wraps, paper tape, alcohol pads, I normally have acetic acid in a syringe too. This doesn’t include the silver ring splints that I wear every day to keep my fingers from hyperextending or dislocating or the medical grade arch supports in my shoes. This is what I look at every day as a 35 year old zebra.

It gets overwhelming some days that I’m a miniature pharmacy, but most days I don’t even think about it. It’s just life for me. They keep me going to where most onlookers have no idea that I’m a walking medical side show, so I’m alright with it the majority of the time. It mainly stands out when I happen to get up late or preparing to travel though.

When I get up in the morning, I have to take a few medications. I keep these next to the bed with something to drink so if I need a bit of help with the pain levels, I don’t have to go anywhere to get it. Next, I need to wash. If I get up late, I can get away with just taking the bandage off the granuloma site and cleaning it with the tools from my toolkit but I prefer to head to the shower, which I currently take only while sitting on a stool. I then have to re-bandage the granuloma site. After that, I put on all my ring splints and get dressed. UNLESS…there’s extra pain that day. Then I need to insert time to either apply KT tape and hope my skin doesn’t react to it or put on a heavier duty brace for any afflicted joint and THEN get dressed.

Through the day, I need to change and clean the granuloma area, so that means I need to take all those items with me if I go anywhere. Sometimes I’ll need to take a medicine that combats the reflux that can attack without warning. And I do mean without warning. It’s not like I’m eating tomatoes stuffed with hot peppers and wondering where it came from. I’m talking a sip of water and a cracker and a sleeping dragon is roused inside my stomach. So, that stuff has to come with me too.

I have a knee scooter that goes in the car in case my nerve pain in my ankle decided it want’s attention past what I’m able to ignore. I’ve got a cane in case I unexpectedly twist, pull, or dislocate something. If I’ve been having more prominent issues over the past days before, I might throw some of my braces and the TENS unit in the back seat just in case I need to have them around.

As it gets into the evening, I’ve got to possibly change the bandage once more depending on what method I’m using and take the rest of my daily medications. It’s not too bad. It’s manageable, at least on these good days. However, it’s because of this reason that I can’t just take unexpected trips. When we head to my favorite surgeon or to my rheumatologist, I take a contingency bag for all of those likely “just in case” situations.

Because of all of this, I can’t have one of the cute, feminine travel bags and call myself prepared. I have a tool bag, quite literally. If I was the type to be embarrassed about having EDS or any of the complications, I can pass it off as just a tool bag that’s sitting in the car. It has a study construction so I don’t have to worry about scissors or syringes poking through and tearing the bag. It keeps everything hidden so nobody knows what I’m carrying that day. But most importantly? It’s big enough that I can easily store almost everything in it! Plus, personally? I’d rather carry a tool bag and have people wonder than a diaper bag…which was the other option that was suggested to me and quickly struck down.

It’s fantastic! It’s kept just slightly under the bed so I can just reach down and slide it out to root through it. All the medications and ointments and bandages are in one place and safe from curious felines that want to lay on things. There’s even enough space currently there I could fit a wrist or ankle brace in there along with the KT tape! It even had enough space to carry all the supplies needed for that time I had a PICC line installed!

It’s just one of the ways that I have found to organize and prepare for the expected unexpected in my daily adventures.