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Positivity and determination

October 9, 2011

The stomach medication is working wonders, it’s certainly not perfect, but compared to the last 10 years, I can honestly say that I have never felt so good! I’ve been trying my best to ignore this headache and head pressure and have made it out most days for walks in the afternoon (obviously the recent hot spell was a no-go, so I entered my vampires retreat for a few days). But using the camera again has been great! (you can see some of my latest images on my photography blog… On Location)

Positivity and determination are ultimately winning the day and despite the lows, I seem to be able to pick myself up in the right direction much sooner than before.

This was never more true than the night before last. I had spent all day with a bad headache (more so than normal) by the time the evening arrived the room was spinning. I eventually gave up battling it and went to bed.

Even laying down, which normally does a great job of sorting things out, the room was still spinning in the darkness and after ages laying there, I needed to make a pit stop. Using the walls for stability and guidance, I made my way to the loo (this time being sensible enough to sit to do a wee).

As I went to get up off the seat and my legs began shaking violently, so I made a hasty dive for the floor just in time for the worst of the convulsions. I called out and dad helped me back to bed, where I managed to stop the seizure myself within 5-10 mins.

It was a night of insomnia, which mainly consisted of me running things over in my head: I’m never going to be safe again. It would be selfish of me to set off for a walk in the lake district knowing that I could have a seizure at any time. The meds clearly cant hold them back. Its not even hot weather at the moment. I hadn’t done anything all day to cause this. I’m never going to be safe enough to head out alone…

In truth, I knew in the evening that I had the tell tale signs of something not being right, and I knew an episode was imminent an hour before it started. So it wasn’t ‘completely’ out of the blue. Ok, so I now know the meds can’t hold them off all the time, but once in a blue moon is to be expected – I guess. Anyway, back to my point.

I got up the following morning, and despite feeling like shite, I managed a two hour journey down to Essex to see my grandparents! I started the journey sitting in the front, but within 40 mins my legs were shaking along with my jaw and the head pressure had reached exploding point. We stopped, I got out to relieve my O.A.P excuse of a bladder, and then got in the back.

Now this is probably illegal, but I spent the rest of the journey with my seatbelt on, but with my legs up laying across the back seats – Genius! With my legs up the blood didn’t pool half as bad and the head pressure was much more bearable.

We stopped once more on the way there, but on the way back I only had to stop once (and that was more a ‘bladder’ thing than a ‘head’ thing!)

Determination seems to be the best drug available, and I’m fortunate enough to have a wealth of it. I want to end this with a quote from a friend (who also has POTS), after discussing with her how much I have been pushing myself lately, she said;

“It’s bound to do you more good than harm”

That is something I plan to live everyday by!


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