Okay so like… the struggle is very real when you are packing for a trip with a chronic illness. Most of my trips over the past 5 months have been to the hospital- so there are many things that I do not need to worry about because they either have the things I need or it would be foolish to bring other things. Well and we also keep a hospital bag packed at all times so yeah that makes our trips a lot easier too. We recently found out that I will need to go back in for another procedure in the OR because my last one failed, and after this upcoming one we will determine what surgery I need. The surgeries I need are very dangerous so when the opportunity presented itself for me to travel, I wanted to seize it.
As many of you know my fiancé and I founded Off Season Training (a Dance Medicine Clinic & Elite Coaching Service) and we work with pre-professional dancers on the daily. Sadly these past couple months things have been slower because I have had to cut back due to the medical challenges I have had. One of the pre-professionals I had the pleasure of working with this past summer is preparing for the International Ballet Competition along with a couple other competitions this winter/spring. She came up from FL and trained with us for 8 weeks through our annual summer intensive. Not knowing where my health will be (depending on whether I need the surgery immediately or if I can wait until September. Regardless if my other hip pops out it doesn’t matter and I have to go in- so there are just many different variables.) So instead of waiting to go down until March I am leaving tonight! The hope is that I can accompany her to the IBC but if I cannot at least I was able to help her prepare.
So back to the packing. Since the EDS has become more progressive I need more medication and braces than ever before. Not only do I have to pack all of the tape and braces that I need in the moment, but I have to take my top braces for each body part just in case something pops out while I am away. I say I take the top braces because I have an average of 4 braces per each joint on each side; each brace does something different depending on the type of subluxation or dislocation. Before you ask- yes this requires a separate suitcase. I have one smaller suitcase that holds all of my braces, tapes, and medications. I you do not already use a separate suitcase for all of your meds and braces, you should because it is easier to organize and simplifies your life.
Here is what is in my medical bag:
Pro Tip: If you have to travel with a boot- stuff it with therapy tools and skin sleeves
Upper Body Braces (all skin sleeves are packed in there as well)
- TMJ Collar
- R Thumb Spika Splint
- L Thumb Universal Brace
- L Custom Wrist Brace
- R Wrist Split with removable metal
- L/R Elbow & Distal Tricep Stabilizer
- Shoulder stabilizer wrap
- Finger Splints
- *I have my shoulder pillow stabilizing brace as well but I used it in my regular suitcase to keep my tripod safe!
Lower Body Braces (all skin sleeves are packed in there as well)
- Boot w extra Pump (I only needed my L one because my foot is essentially in a boot in the HKAFO)
- Extra Custom L Patella Stabilizer (I always wear my R knee custom)
- Plantar Fasciitis Brace
- Hip Wrap for L
- Ankle Wrap
Tapes, Gels, & Patches (not only am I in the process of getting my license to tape but if I am not taped all the time my joints will dislocate more consistently)
- 4″ Rock Tape
- Cover Roll
- 2″ Kinesiology Tape
- Lidocaine Patches
- Voltaren Gel
- Ballerina Butter
Daily & Emergency Medications are all inside that pink mesh bag along with the emergency meds I keep on me at all times.
Finally in there I have all of my therapy tools that I use everyday to keep my joints in the best shape possible. My tools consist of a LAXball, a Double LAXball, therabands, 4″ plastic ball, stretch strap, and HR monitor.
Then the regular packing starts.
It is a proven fact that the most productive and successful people in our world try to keep their decision making to a minimum. As a former pre-professional athlete to being an entrepreneur and being someone who fights 3 different chronic illnesses- this is key. When I say make minimal decisions, I mean that you do your best to make decisions beforehand such as picking out your clothes in advance or meal planning. I used this strategy in my packing. Now of course there are lots of things about my life now that make my life unpredictable, but I can be as best prepared as I can. The two ways I did that was create a list of everything I need to pack from specific bras to training tools and business materials. Here is my list and also all of the outfits I will be wearing for the next 2.5 weeks.
Then after being able to see the big picture I moved each sticky note to the notes section of each day in my planner. This is going to make the decisions I make in the morning simple because I don’t need to make decisions I just need to follow a plan. Of course I know that if I need to be in a brace in the brace suitcase that isn’t in my normal day to day plan that might change things. I also know that in having RSD/CRPS, changing temperatures is really hard so going from the cold New England winter to the Hot winter in Naples, FL could present some challenges. These challenges are mainly simple as in hot flashes or cold flashes and color changes. I am not ashamed or embarrassed by my leg turning blue/purple or being blotchy and all red. Basically it’s not a big challenge appearance wise, but it does mean that there are temperature changes going on that I need to pay attention too.
In conclusion packing is a struggle when you have a chronic illness but if you spread the planning and packing out over a couple days to ensure you have enough spoons to get it all done, it’s not so bad. I hope these tips help you out! What do you do when you are packing for a long trip?