My body never fails to amaze me, and not always in a good way. I have been constipated my entire life due to my Ehlers-Danlos and the only time I’ve ever had diahorrea has been when I’ve had a tummy bug. Until the past two months, when we appear to have become intimately acquainted.
Most people with Mast Cell Disease have diahorrea for reasons not fully understood and since becoming allergic to antihistamines I’ve joined their ranks. It sucks. You’re proper uncomfortable when you are constipated but at least you don’t have to spend your life wondering where the nearest toilet is or with your insides gurgling like a washing machine on the spin cycle.
I could cope with all this, just, if it weren’t for the pain. I hurt from my throat to my bum. My entire insides feel inflamed and the pain is sometimes so acute I’m literally doubled over. It’s been so bad I’ve actually been scared there is something else, something more sinister, going on but you can bet if I had every investigation under the sun they’d find nothing other than inflammation and it’s not worth months of stress and hospital appointments just to confirm something I already know. According to research, stomach pain is in the top three symptoms for people with Ehlers-Danlos and experienced by up to 85% of sufferers. Add MCAD to the equation and I’m basically stuffed.
I’m still having random mast cell reactions, sometimes mild, sometimes not so mild, after eating. Palpitations, wildly fluctuating blood pressure, severe nausea, cramps, severe fatigue, anxiety, euphoria and all simply because I’ve eaten, or in some cases, drunk something. My reflux is horrendous, ditto with the nausea, I was wide awake and watching telly at 4am last night (again) and my brain feels like its been trampled by a herd of wild elephants. I do not have my happy head on.
I am drinking enough ginger, peppermint and camomile tea to sink a ship and wearing my TENS machine on my stomach for the pain, which is actually rather weird and uncomfortable and I’m not sure helps in any event. I dread meal times and the only relief I have is the four hours or so I manage to sleep at night.
Over the years I’ve come to terms with my M.E. and my EDS. My body does its best to keep the equilibrium and, as long as I stay within my limits, both conditions are manageable. Not so with MCAD. It feels like the enemy. Every single thing which might help, from antihistamines to steroids, mast cell stabilizers to supplements, I react to – the disease thwarting the very things which I know would bring me relief. No matter what I do it always has the upper hand and there are days when fighting it is just so exhausting I simply want to give up. Enough with the never ending suffering already.