“Surely if you just rest for longer. . .”I wish all I needed was to rest! In fact, when my body decided to totally crash 6 years ago, I did rest; I had no choice but to rest. I was off work for around 4 months – it did not help!
“Have you tried this diet, I have heard it is amazing!” Fad diets cannot cure EDS if they did all EDS fighters would, in fact, be cured by now. We hate living in a restrictive life!
“What you need Pippa, is to lose weight. Your poor joints under all that weight!”
Unsurprisingly, I would love to lose weight, I want to be back to the weight I was before my body crashed, but every time I try to lose the weight my body crashes again. It turns out I need a lot of calories to keep fighting, Even if I do find the diet to suit, losing weight will not cure EDS, 7 years ago I was the slimmest I have been since I was a teenager and guess what? I still dislocated daily.
“What you need is tumeric!” I accept it has health benefits but it is not the cure for every illness known to man.
“Maybe if you worked less.” Oh, to have the option to work less, I would agree my quality of life may improve a bit, I would be able to pace myself better. However, working less will not cure EDS, even when I pace myself I still get flare-ups and it is even more infuriating when things go wrong for no reason. Plus, work gives my mind a focus, I don’t like thinking about EDS, the pain, the crippling exhaustion or the future. Work is a distraction.
“I have a friend who saw a healer, I think it could really work for you!” I am not even sure where to start with this one! If healers are so amazing then why is there illness and suffering in the world? I am all up for positive thinking, but really. Possibly, just possibly I was put on this earth to fight EDS? Maybe this is my path in life.
I appreciate that these comments come from a good place, but they aren’t always helpful. These comments are as helpful as the sideway (puppy dog) head tilt! I do not need advice (not even the DR’s know what to do with me!), I do not need sympathy or anything else along these lines. All I have ever asked is that you try to understand. EDS is cruel, it has stolen so much from me, but I am still me. I will always try my best to push through, I do not like to let you down, cancel plans at the last minute suddenly go off the radar. Sometimes however stoic I am, EDS wins.
I accept that I have EDS, I accept that I cannot always beat this, but right now I will fight this. I hope you will walk beside me as I fight this and possibly help me up when I fall haha !!