A phrase was spoken by someone who knows a whole lot but doesn’t know what it feels like. A senior consultant who I cannot fault. He is amazing and takes so much time to explain things I find hard to grasp.
“If you can tolerate it you won’t make it worse” was from another wise medical professional who really knows her stuff. But once again although there is support and real empathy, they don’t know how it feels.
Linked very closely with Ehlers-Danlos Syndrome — Autonomic dysfunction affects anything in the body not controlled by hormones. So things such as sensation, temperature control, blood pressure, and bowel and bladder control.
Imagine losing sensation in your lower legs, the feet becoming white and numb -- tingling up the leg. How is this tolerable? Is it any wonder I can’t trust my legs when the feeling can vanish in an instant?
The fear of falling amongst other issues and symptoms from a multitude of health and mental health conditions is the reason why crutches and wheelchairs need to appear. What would you do?
Hand sensation can be just as bad. Within seconds it can go from normal to white and numb and lacking any feeling. The next minute hands and fingers can be swollen, bright red and burning. Is it any wonder I worry about trying to pour from a kettle or carrying a plate of hot stew? No, it’s not and this isn’t sensationalism, it’s reality.
The upper body is hot and the face bright red — goosebumps on the arms — hairs standing at right angles. Sweat pouring down my arms. Trying to exercise — what my physio wants me to do. By the end, I am soaked through. Hair drenched. Does this really encourage me to exercise?
Imagine not being able to distinguish the feelings of when you need to go to the loo — as an adult. When you may have an accident — you just can’t tell. What about when you get up too fast and you feel like your whole body is going to give out on you? Now tell me this is easy and I need to pull myself together.
Until you’ve walked in someone else’s shoes you should not judge. Listen — show some empathy — support — offer to help in some way. A much better option — a more humane approach.
Show some care, even respect for what I am having to manage and bear. Even some encouragement that I’m doing well would be nice.
Existing — achieving — doing and helping others are goals I set for myself. Compliments can help — judgement equals turmoil which equals deterioration and stress. That then leads to more deterioration in Addison’s territory and the need for additional treatment.
It’s a lot to get your head around when you are at the centre. I can imagine what it’s like for others. But not understanding and a failure to try to at least listen and learn a bit there is no excuse.
Just because we look ok and don’t moan and groan all day long doesn’t mean there is nothing wrong. Sadly there is no cure for this and there are no answers to our questions. It’s about self-management and becoming resilient both mentally and physically. That’s not an easy thing to develop, learn and implement.
For help and support visit the EDS website: https://www.ehlers-danlos.org
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