Some of the challenges I face in my daily battle with Ehlers-Danlos syndrome are major. Some are minor, some are humorous, some aren’t. Let’s dive in.
Bathing and Grooming
Some days are better than others, but if I’m having a rough week, getting a bath is a tough prospect. Getting two is a dream! Part of it is having the energy. Part is coordinating with someone to be around in case I need help getting in or out of the tub (or need an ambulance if I fall). Let’s be real. I can slip pretty easily, and having my back seize up or my knee go out would not surprise me.
My husband spent an hour combing knots and tangles out of my hair today. My hair is super curly, and it gets so tangly. I wear a satin lined cap, usually, to sleep in, but it still will tangle and my arms can only go so long. My husband is amazing.
A common problem associated with Ehlers-Danlos syndrome is motility issues. This is where food sits in the digestive tract longer than usual. I have serious issues with this. This, plus the medication results in serious constipation. Once every three weeks or so. Unless I have diarrhea. One thing for sure is the constant nausea. The medical marijuana helps with that, though. I don’t get the munchies, which is nice.
One thing I found very difficult was tracking my medicine, and when doctors asked what I was taking, I just looked blankly. My husband started making spreadsheets of my meds, with dosage, prescribing doctor, reason, and date prescribed to bring with me. I started bringing them to all new doctor appointments, and they were so helpful! Just print off a copy, they go right into your chart.
Dry Mouth and Skin
I try to drink as much water as I can, and take Vitamin E and Flaxseed. My eye doctor even commented it’s likely helping my eyes to stay slightly moisturized. Biotene makes dry mouth toothpaste, mouthwash, breath spray, but skip the mints.
I’m constantly trying to combat my dry skin, and I find I have to exfoliate a lot! I seem to have a lot of epidermis. I use Korean spa towels, and Caudalie Divine Oil on my body, and try an essence, serum and oil on my face when I have the energy.
I’m down to one major thing a day. Some days that’s a bath. Usually I have 3 hours of activity in me. Not hyper activity, slow activity. I need naps. I am really proud of the days I can stay up all day. I am having more of those, as I’m moving less. It’s a toss-up. I can move around for a short time, or I can be stationary and be available for a much longer time.
Between not having the spoons to move too much and the medications I was on, it was really easy to put on a whole bunch of weight in 2009 to 2014. In 2009, I started getting sick from my gallery bladder and I couldn’t move. I was quickly confined to bed by the end of the year. While I was eating normal meals, about 1700 kcals a day, I was rapidly gaining weight. It was just too much for my non-activity. By end of 2014 I was 300 lbs.
Starting in 2015, I decided to join MyFitnessPal and start watching what I eat. Towards the end of the year, I was down 40 lbs. In 2016 I lost another 10, and then in April, 40 in 3 weeks. It took me a while to recover from being so ill. We don’t know what was going on, but by the end of 2016, I had lost 100 lbs. I want to lose 30 more. I’m not pushing too hard, because I don’t mind some extra. In case I have another incident like April’s.
Sometimes friends get it, sometimes they don’t. Sometimes they are okay with your terms, sometimes not. There’s always a negotiation when you have a disability, and sometimes it works out and sometimes it doesn’t, and sometimes things change in the middle. One thing, I am often jealous of the things I haven’t been able to do.
Lack of Sleep
Adrenaline rushes or things on my mind will often keep me up at night.
A post on Instagram asked: What is the last thing you did for fun? And I couldn’t answer. I need to get more fun in my life and be more creative.
I’ve had to give up many things I love. Crocheting is too painful now. Nail art was my passion, but my hands hurt too much now to continue. I love to read, but I can’t concentrate long enough to do it much anymore. I miss all these things. But I’m still trying to do them little by little or in my own way.
It seems quite difficult to remain positive with all of this going on, but it can be done! It needs to be. My focus needs to remain on being as healthy and well as possible. Taking medication on time, eating well-balanced meals, following my food plan, admitting when I’m tired, staying away from negative people, not watching the evening news, maintaining relationships with my family, and practicing good self-care.