“But my God shall supply all your need according to his riches in glory by Christ Jesus.” Philippians 4:19
Any kind of chronic illness is hard and comes with its own set of difficulties. Ehlers-Danlos Syndrome is no exception. It has so many strange things that goes on, affecting the whole body that it’s hard to say it just affects the joints. It is even harder to describe what we are experiencing but here are a few things we do that might be strange to others but are perfectly normal to us.
Changing Positions
You may see us leaning on counters for support. Locking our knees while standing (not always a good thing). We love to sit cross-legged (until the knees hurt from old age) or tucked under our bodies. You may see us shifting constantly. Yes, we do this. I do this a lot and as a kid my mom just thought I was hyper. Little did we realize what she thought was cute was me compensating for my body.
Coordination and Balance
There are days when I end up with bruises all over from bumping into things, tripping and dropping items. I am known as Miss Clutts and seem to be always misjudging distances and having awkward moments.
Injuries, Sensitivities, and Voice Symptoms
Injuries can be on a daily to weekly basis because of unstable joints. Sensitivity to touch, sounds, etc. have become the norm. It isn’t always but when your body has a flair up it is sometimes better to be in a quiet room alone. The hardest thing for me has been my voice going all whacky thanks to EDS. I haven’t been able to sing as much as usual thanks to vocal chord fatigue but that just means my singing goes on in my head.
Temperature, Circulation and Dizziness
Bodies become harder to regulate the temperature for us so we are either very hot or very cold. Dizziness is common especially when just standing up from a sitting position. I have learned to regulate my body temperatures with layers and standing slowly. Sometimes this helps and sometimes it doesn’t.
All in all there are so many things to deal with on a daily basis and yet we can do it with joy and little complaints. There is no point in complaining when you know you still need to go through this life. God is with me and I know He is my comfort and peace. I take great joy in waking up in the morning, being home with my family and doing even one task in a day. God is good all the time.
“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.” II Corinthians 12:9