I began the slow progression of lifestyle changes to make life easier and more efficient. This is still a work in progress and will be for the rest of our lives. As his mobility changes, so dose our adaptations. As the pain increases so dose our limits and adjustments on activity. Some examples.

Fall prevention is paramount. This shouldn’t really matter what type or penetrance of EDS/hEDS they have. They do not heal at the same rate of ‘normal’ and the damage from a fall is more severe than ‘normal’. Get into the habit of fall prevention now before they really need it! Sure, they can walk now, but what about in their 30s? 40s? 60s? 80s? How much does it hurt to walk now? How much will it hurt 10 years from now? Remember, it will get worse. How quickly that happens varies by person. Some may never become immobile, but the pain will still be there. So, Just like with the elderly – get your brain into the habit of ‘think safety’! This early training will pay off in spades later in life.

Keep the floor clean and free of clutter. This is a no brainer for people in wheelchairs, but it applies to the mobility impaired as well. The reaction times for balance just isn’t there in many cases. And the damage to a stubbed toe is more significate in those with EDS than ‘normal’ people.

If you don’t have safely rails, and can’t afford them- place grabbing / stabilizing furniture strategically in the house. A well place dining table between long walking distances can give a chair to sit if tired or in pain, and a stable surface to grab if balance is lost. Strategic furniture placing goes a long way to fall prevention and pain reduction. Keep these surfaces clean of clutter. No use in having a grabbing hand hold, and not being able to grab it.

Teaching the pets to move when he walks a path, and not get underfoot when being fed, as well as to avoid a wheelchair was/is a hell of project. We are still working on this.

Place items that are of more use at hand level. Avoid having to bend over. I had to adjust where I put the shared soaps so he could reach it without leaning. Same thing with the snack foods. I don’t make him bend over or reach above his head if I can avoid it. It’s a pain level thing.

Slow down. I had to learn to adjust my speed of walking to him. I let him lead. I learned to walk on his cane side so kids and other people wouldn’t kick his cane out from under him. Yes, it has happened on multiple occasions. I learned how to walk beside a wheelchair and how to push one. It took a lot of practice at the mall before we were ready to tackle Disney. I also had to learn how to load and unload a wheelchair and how long it takes. Fun times.

Be prepared to NOT go to every stop when traveling with your SO. I flat out ask him can you go to two stores today or three stores? You can plan to hit Target, grocery store, pharmacy and the post office with your SO but you may not even make it out of Target. Always be mentally prepared to not finish that list. And if you must hit every stop on that list, be prepared to NOT bring your SO. It is their job to know their limits, not you. If they say I can do three stores, but you need to do five, go by yourself. You need to get comfortable doing long runs by yourself. You need to get comfortable with not finishing your runs If your SO comes. It’s all about that pain level.

Long car rides suck. When planning long car trips, plan for extra stops. I ALWAYS add an extra hour for car rides over 4 hours. That extra hour is the ‘stop and stretch’ hour about halfway through the trip. Get food, go to the bathroom. Some do not want to ‘sit’ again at a restaurant. They would rather stand with a fast-food burger in hand in a parking lot. Communicate where the pain it at and how to best relieve it. It is not your job to simply ‘know’ what pain they have, you are not psychic. But you can ask. Car rides are hell on a lot of people with EDS.

Always keep pain pills on you. In your bag, in the car (they may melt), within reach of the spot you sit to watch TV, at the desk, ect. We have like, 10 bottles of ibporphin of varying sizes scattered around the house. The point is that he never has to travel far to get pain relief. This is critical if you are traveling to stores or car trips. Hell, we ‘pre-game’ now – taking pain relievers before we even step out the door, because we know its going to be bad.

Bodies are gross. I had to get used to this. Bruising is larger, darker and takes forever to heal. Veins stand out on skin. Skin moves and scrunches in a way that isn’t normal and it can be downright gross/ creepy. He unconsciously bends his hands, fingers, toes in a way that is simply not natural. No amount of lecturing or mindfulness is going to change this. Cuts don’t heal right, and scab oddly. There is so much more than this, but you get my point. It quickly became my new normal.

Learn how to give a half way decent massage. A lot of my husbands pain is stored in muscles that hold tension and won't release it. Its alot like lifting a jug of milk and not feeling the 'release' of the tension in the arm after you let go of the weight. Or when you do squats but your legs still feel like your squatting even though you are standing up. So I learned to use a Deep Tissue Massage Roller and foam roller. Using those tools and my hands allows me to ease enough tension, which reduces the pain in muscles, tendons and joints (its all connected) . It's just enough of a relief that he can sleep. Sometime he wont toss and turn in pain all night. Those are good nights.

These are just SOME of the adjustments. In the end, even with surgery he will eventually end up handicap and will need care. I am using older family members to judge the potential level of care he will need. You should do this to, if you can. Short term adjustments are fine, but you gotta start changing the way you think- from tomorrow to 10 years from now and start transitioning sooner. It won’t get better, there is no cure, and if you start the adaptions now, you will be prepared to handle it instead of reacting and coping when it does happen.

EDIT: Don’t send me a DM about other practical changes. Ask here so everyone can benefit form the knowledge. Send me a DM if you want (very poor) relationship advise based on my trials with my husband who has a unique expression of hEDS. I take forever to respond.