Fingers crossed for food poisoning. 

Fingers crossed for food poisoning. 

So, recently I went on holiday with my family. We spent a lovely but exhausting week at the seaside in a static caravan. Honestly, I really enjoyed it; but even with rest and wheelchair use it took everything out of me. This became more literal on the Thursday when my stomach started playing up. Literally EVERYTHING was coming out of me, via the rear exit. 

These bouts of crippling pain and bowel evacuation hit me in the early hours of the morning. I woke in the night and after rolling around like a landed seal for a while I gave up and sprinted (more waddled, I’m heavily pregnant) to the teeny tiny bathroom. What ensued will haunt me for life. Three hours of bouts where my body felt like it was literally trying to turn itself inside out. Best of all this cycle repeated for the remainder of the holiday, well past heading home. 

On the Monday I could take it no longer. I called my doctor. In their wisdom they professed it just be campylobacter, and I was ordered to provide them with a sample. Now I don’t want to go into too much detail, but harvesting that sample was quite possibly THE worst experience of my entire life. Bar none. (And I’ve had cameras inserted into almost every produce of my body.) But, like the trooper I am, I did it. My husband, bless his heart, was tasked with delivering said specimen to the surgery. A task only made worth it by the look of repulsion on the receptionists face when he handed it over. 

So, my sample was in, and all that was left for me to do was hope. But here’s the strange part. Unlike most, I was hoping that I DID have the dreaded bug! Crazy right?! Wrong. 

If I had foodpoisoning then it would mean a week or do on antibiotics and it would be gone. Poof!! I’m your face bugs, you’ve been eradicated!! But if not? Well, then it means my body was just doing its usual trick of torturing me. As for treatment? Well that would be none existent. I’d just have to ride it out. 

Results day arrived. Like a nervous teen awaiting exam results I called the surgery. NEGATIVE. No bugs here! There’s nothing messing up my bowel other than my bowel. I was, and still am, gutted. Maybe because she was worried about my other conditions, maybe because my bowel cramps were now causing bear constant braxton hicks, or maybe to placate me, she called me to the surgery. There she poked and prodded and tried to be reassuring. I’m doing all the right things (I know). My baby is probably aggravating my bowel (fantastic, that’s just another two months of hell then). Hopefully it’ll settle once he’s here (I hate the word hopefully). But what it boiled down to was this. There was really nothing she could do. 

So here I am. Living with it. Riding out the waves of cramps and tightenings and daydreaming about only having food poisoning. Oh, how sweet it would be to have a problem that could actually be fixed! 

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A message to the resident. 

Recently I had to call up the hospital and speak to my doctor about a change in my condition. (One of my conditions, I have many. This one being POTS that causes my heart to race on standing. Only recently it’s racing all the time. Even when I’m laid down. No fun.) Only my, lovely understanding, doctor wasn’t there. He was on holiday. I got to speak to a resident. 

Let’s just say the call got off to a bad start when he immediately began by talking down to me. Clearly to him I was just some uneducated fool who was terrified over nothing. This immediately got my back up as 1) I’ve been told by many doctors they are impressed by my knowledge of my conditions and how I keep track of my treatment etc. it has even been admitted that, as my ailments are rare, I’m more well versed in them than a lot of medically trained staff. 2) I was not, and am not terrified. I’m aware I have this condition and that it’s not life threatening. But when it is leaving me pretty much bed bound I would like to try to improve the situation, thank you very much! 

Things further went down hill when I mentioned the readings I’d been getting from my heart monitor. Let’s just say I didn’t appreciate him  stating “We don’t advocate people having their own heart monitors, it just frightens them.” I think it was at that point I gave him an education, it went a little something like this: 

Look, I am not some hypochondriac freaking out over my symptoms. I was diagnosed with POTS around four years ago and had been suffering with it much longer. I know it causes tachycardia. I also know it is not going to kill me. Fear is not why I have a heart rate monitor. I have one so that I know what my ‘normal’ baselines are. I have one so that when I’m out and about and I feel symptomatic I can check my pulse. I can ascertain if I can make it to the car, if I need to sit down or if I need to lie down right there on the floor. Because I’ve tried making that call on how I’m feeling alone. I inevitably push myself too far and end up getting better acquainted with the cold hard ground, at speed. Let me tell you, using the monitor is preferable. Especially as I’m heavily pregnant! Finally it allows me to track my condition, and if there’s significant longstanding change I can contact my doctor to discuss my options. 

It was at that point his attitude towards me shifted. After I pointed out I was only calling to check I was doing everything I possibly could to help myself, and that I didn’t want to get deconditioned his attitude completely changed. He began saying things to placate me “Well clearly you know what you’re doing” etc etc. 

So my message to the resident, or any other doctor, is this: 

Don’t automatically assume that you are by far the most intelligent person in the room, and definitely don’t assume you know more about the patients condition than them. To you we are just another patient, with another condition you have read about in a text book. But this condition is a huge part of our lives. It affects us every day. How can you possibly know better what it’s like to live with? How can your textbooks equal years of experience? Yes, some specialists are an amazing fountain of knowledge, for whom we are very grateful. But most of you? Well, most of you have the bare bones of information. Listen to your patients. Learn from your patients. But mostly, don’t assume we are hypochondriacs for having tools in our arsenal to help us live.