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Where’s the blood..?

June 5, 2011

I came up with a great game the other night – “Where’s the blood?”. It’s really simple to play; suitable for all ages; takes no time at all to set up and only requires one thing… someone that suffers with PoTS.

In all seriousness my body quite literally has a mind of its own, for example my head can be sweating, whilst my arms and legs are covered in goosebumps. I can also be leaning against my left arm and it’ll be my right arm that goes completely dead. I’ll admit although its scary, I strangely find it rather fascinating, and I get great satisfaction in freaking my family out. “Listen to my knees as I go up the stairs” ‘click, clunk, click, clunk’.

Perhaps the worst of these was when I asked mum to put her hand on my knee to feel the gristle-like grinding as I slowly bent my knee. Much to her caution, “No, its going to be horrible isn’t it!”. She did eventually place her hand on my knee and as I bent it slowly, the grinding started, and then without warning the joint let out an almighty bang! that would easily have been heard through in the kitchen. Needless-to-say mum wasn’t best pleased, but pain aside it was an impressive sound!

So that brings me nicely to the most fascinating thing about PoTS – blood flow. The blood can be absolutely anywhere in your body at anytime. Depending on where it goes, depends on what symptoms are worse. On hot days, when its humid, the blood tends to go to my head – it feels much like hanging upside down, only when you sit upright, lay down or stand up your head still feels like its upside down – its awful! (Yesterday I spent all day trying to escape it with no luck! Fortunately today is less humid) But the most regular places are after I have a shower, when it goes to my ears and causes earache and jaw-ache, or after eating, when it goes to the stomach to digest the food, so I eat smaller portions to compensate for this.

Although these are all fairly regular things, the blood can go crazy, which leads me to the game. The other night I was sitting there and my right knee suddenly felt as though I had just tripped and twisted it, the pressure soon built up and the pain more intense, like it was swollen. I placed one hand on the right knee and it was on fire, like placing your hand on the side of a boiling hot mug of tea. The left knee? Well, that felt like the inside of the fridge. And so the game began… “Nathan? Guess which knee the bloods in!” The crazy thing is, you’d think the knee was size of a tree trunk with the way it feels, but it just turns dark red. The only blessing is the knowledge that at some point the blood will eventually move elsewhere – yet its bound to cause more havoc when it gets there.

The trick with the biggest wow factor is to point one hand to the ceiling and one to the floor, within seconds the one pointing down has gone a warm beetroot colour, whilst the one point up is tingling as it looses feeling and turns pale white. As fascinating as it is, its not superhuman so I guess joining the X-Men or wearing my pants on the outside of my trousers is out of the question…

the following shots were taken within seconds of each other – and no photoshoping was involved!

after 3 seconds of righthand pointing down and lefthand up.

5 seconds for the blood to settle and then 3 seconds of RH up and LH down

One Comment
  1. There is so much of this that resonates with me. I also have a picture of my hands where one is purple and one is normal!

    While I’m sorry that we both have POTS, I’m relieved having ‘met’ someone else with it as no one in my area has any idea what it is. (Including almost all doctors and hospitals.)

    Thank you for sharing your story 🙂

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