I’ve heard back from Dr Seneviratne and unfortunately my tests can’t be carried out in Manchester, so I’m travelling back down to London for the day next Tuesday to have DAO, methylhistamine, urine and plasma histamine, and a histamine releasing urticaria screen done. According to Dr S, we don’t have a reliable 24 hour N-methylhistamine urine test here in the UK, nor a PD2 or heparin – all of which are available in the States but for some reason not here. It sucks. In typical Sod’s Law fashion I have not a hive in sight, and even my rampant sneezing has calmed itself down this week. If I knew what caused them I’d provoke a reaction, but I have no idea what sets them off.
I’m not sleeping at the moment and it drives me crazy. I can’t keep my eyes open past 9pm, no matter how hard I try. So I doze off and sleep fitfully until 1am. I’m then awake for a good hour, listening to a talking book on my iPod. Eventually I manage to nod back off until 4am when…….TADA!……..my brain decides it’s had enough of even pretending it’s trying to sleep. I then lie listening to my book until 7am which is my usual getting up time. I’ve had trouble sleeping for the entire 20 years of my illness (though before I got ME I could sleep for England, and did!). I miss sleeping – if nothing else it gives me a break from feeling ill and being in pain. I know histamine is heavily involved in the sleep-wake cycle so I’m sure that isn’t helping. It does get to the stage though where you don’t care what’s causing it – you just want some kip!
Things on the Ehlers-Danlos side seem to be thankfully very quiet at the moment. My back pain has been relatively good recently, though getting worse again with not getting enough sleep which is really frustrating. I’m not wearing any braces at the moment, apart from my SI belt which I use every day when walking my dog to help with the stability of my SI joint, and an occasional Oval 8 on the DIP joint of the middle finger of my left hand. I really do need to order some more insoles for my shoes though, as the ones I currently have are fairly much knackered! Two pairs cost £30 though, which is a lot of money as I’m so hard up with paying for all my MCAD appointments etc. and thinking of Christmas looming on the horizon.
On the down side I feel sick 24/7 and have done for months – the taste of acid in my mouth doesn’t help one iota either. Consequently my appetite is virtually zero and I have to keep reminding myself to eat (I’ve lost another 4lbs I didn’t need or want to lose). I also have continual pain from my stomach to my bottom, much of which feels heavy and crampy like period pain. I’m sure there’s all sorts going on in my GI tract, and I wouldn’t be at all surprised if I also had either endometriosis or Pelvic Inflammatory Disease to boot. Due to my drug reactions though I wouldn’t ever contemplate surgery and can’t take hormones or painkillers, so I just put up with it. My nervous system is also a bit loopy, with the continual pins & needles I have in my feet and hands being quite pronounced, and often spreading to include my entire head and face. Mornings and evenings are the worst. When I first wake up my whole body is blissfully calm and relaxed, but within about 10 minutes I can feel my nervous system gearing up for the day, the pins & needles returning and all my muscles tightening. And in the evening when I’m settling down to sleep I get all sorts of twitching, limb jumping, feeling like the room is moving or I’m falling, and skippy heartbeats while my nervous system turns itself off again. After 20 years I just wish it would bugger off and leave me in peace. With the hyperactive nervous system, nausea and insomnia I’m consequently quite tired and not able to do much – no change there then!
I had a huge reaction to my recent blog post on Love & Romance which was quite unexpected. It shouldn’t have been, as obviously there are many of us who are single and have chronic illnesses or disabilities, but when you’re going through something which isn’t discussed in public you do feel like you’re the only one who feels that way or who is coping with that situation. I even have healthy friends who could relate, as they have struggled to find ‘The One’ for various reasons and also feel lonely and crave intimacy. It’s comforting to know I’m not alone but I feel sad for all of us who are unable to share our lives with someone special and just long to be held.