Ehlers Danlos syndrome is a set of genetic disorders in which the connective tissue that supports bones and muscles is weakened, causing hypermobility of joints, easily bruised elastic skin and damaged blood vessels. The weakened collagen in the affected joints can lead to painful complications throughout life. People, like myself who have been diagnosed with this condition may suffer from chronic muscle pain and fatigue, joint pain, easily dislocated joints, slow wound healing, or early onset arthritis. The chronic pain associated with Ehlers Danlos syndrome can make coping with this condition particularly challenging. For many, depression is not an uncommon side effect and can have a tremendous impact on a person’s quality of life.
I have hypermobile EDS which means I dislocate all joints at any time, whether due to trauma or not, my skin splits easily or doesn’t heal, it affects my internal organs, my heart and my eyesight. I also suffer from chronic fatigue syndrome, advanced osteoarthritis and Fibromyalgia, so I feel drained ALL THE TIME. On top of the pain I get from dislocations, I have day to day pain from my muscles overworking, trying to hold in my joints.
There isn’t an easy answer to handling my bone crushing exhaustion. I can nap, change my eating habits, sleep 12 hours a night, and none of those things have made any noticeable difference. I’m just tired!
However, regardless of how tired I am, I still have to be an adult. There are, unfortunately, still appointments, errands, and responsibilities that exist in spite of my need to sleep forever. I’ve had to develop a plan for existing in the “grown up world” in spite of the fact that I require a nap. Here are the rules I live by for participating in life. At any given point during the day I could take a nap. When I nap it’s not just a 15-20 minute cat nap – I will sleep 3-5 hours. EASILY! However, there are certain hours of the day when I am more likely to be functional than others. For example, given a choice, I will never schedule anything in the morning. Once I wake up, I spend a few hours getting my blood pressure to rise enough for me to be fully coherent. I just can’t do to many mornings in one week. I also know that my pain levels go up at night, and tolerating pain is exhausting. If you want to have plans with me after 8 PM, those plans had better include pajama pants, Netflix, and my super snazzy heating pad. My window of semi- alertness is roughly 11 AM until five. If I have any say in the matter, I always schedule within that window. Obviously there are activities practically impossible, but if I can make this happen, then it’s for the best.
Obviously, the world doesn’t revolve around my six hour “window” though, so I try to have a backup plan. This involves a little bit of everything imaginable. There are snack bars in the car and caffeinated beverages available for those times where I have to be out and about and just can’s seem to muster the strength to finish a simple doctors appointment. Family game nights in our house are a must. They often involve a big glass of Dr. Pepper, popcorn and warm fuzzy pajama’s so I can stay awake. Self care is so also so important. It sounds ridiculous since I am home all day long ALONE, however I try to make me time. Time when I’m not sleeping, or icing or heating joints where I can do things I enjoy. Whether that’s a craft, or a Bible study, or writing in this blog, or talking on the phone with a friend – that is important to me. Mindfulness is also key. I can’t begin to tell you how many years my counselor drilled this into my brain. Being mindful is almost magic. If I wake up and set out to accomplish, let’s say 2 things (a load of laundry and a craft project), I try to make sure I complete those project. Even if I need to plan ahead or rest in between. I try to make sure it gets done.
Being a Mom to two teenage girls also adds another dynamic to my daily world. I try so hard to be involved in their daily activities, but honestly it doesn’t always happen. There are times when they leave for school and I am still asleep, and often times when they get home from school and I am in bed again. I honestly think they must truly believe that I live in bed, but I don’t. My husband is wonderful and does most of the cooking and involves the girls in all activities, even when I am not up to participating. I think everyone understands what I am feeling, but I know how frustrating it can be – for everyone.
Today my goals was to shower, to paint a small project and to walk the dog. Accomplished. Suffering from a chronic illness isn’t easy. It’s only because of my personal relationship with Jesus that I am able to find real hope and joy for everyday living. This week, my favorite Bible Verse is 2 Corinthians 12:9-10 — And he said unto me, “My grace is sufficient for thee: for my strength is made perfect in weakness.” Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong. AMEN!