Its just such a rush sometimes.

Some of you who have ehlers danlos syndrome, whether it be the hypermobility type like myself, or one of the other types, will have experienced the embarrassing problem it can cause with toileting. Whether it be a sudden uncontrollable urge to "go", the onset of pain which can predict the need, the feeling of sheer panic and "will I make it in time?" This might happen on the odd occasion or it could be almost every day. Whatever happens, and however it happens to you, it can be, and probably is, so embarrassing you can't speak about it. I am cringing just writing it down here, I certainly couldn't give it voice and say these words out loud, not even to a good friend or doctor. It could get worse depending on which foods have been eaten, or you may have no idea what triggered the latest episode, I have discovered that peas, beans, sweet corn, onions, to name but a few, are now permanent "no no`s" in my diet, the pain and suffering after eating these foods can be terrible. Stress is another factor, however much I try to stay calm it's not always easy, certainly easier said than done, and if I get too stressed and it brings on an attack it's difficult to deal with. I am of course talking about ibs, irritable bowel syndrome, which seems to go hand in hand with ehlers danlos hypermobility syndrome, at least it does in my case. It's not just the pain, and the diarrhoea which is the problem, at least for me, it is the urgency, the feeling you won't be able to hold it, the fear of an accident. I think this may be due to the lax muscles and ligaments within the body, those tissues which are meant to hold things in place being weakened by the connective tissues being different in someone with this syndrome. Having arthritis too, and the associated pain that goes with it, walking is hard for me, and walking fast enough to get to where I need to be is such a huge issue, causing untold misery. I shall leave it to your imagination, believe me you don't want me to elaborate. Ehlers danlos hypermobility syndrome is invisible, it is multisystemic and complex, I walk, the little I can manage these days, with a stick. I use a mobility scooter to get around, I hurt all the time, both physical and mental, it's not easy to live so restricted a life. I often feel exhausted, whether due to the struggle my body has to function each day, the pain I suffer, or the inability to sleep soundly for long, or a combination of both. If you have the same, or similar problems as myself, whether it be eds, or ibs alone, I hope you feel just a little better knowing your are not the only one, and that someone else knows how you feel. Oh and loperamide has come to my rescue, more than once, now I couldn't do without it. I'm experimenting with a stress ball too, you never know, worth a try.