The world feels off kilter
I’m spinning…..round and round
Every time I lift my head
The snow descends, engulfs me
At times it overwhelms me
And then, bang, down I fall.
Falling, falling, twisting down
How long it takes to reach the ground
Slow motion into blackness
Pain, pain, pain
Why am I on the ground?
A twist here and a bend there
Limbs entangled, joints at angles
Unnatural, except for me
Stretch and snap is the norm.
Salt, water; water, salt
Compression to limbs.
Like an autumn leaf
I fall and break
My body fragile, unstable
Just another day with EDS and POTS.
So yesterday saw me back in our local cardiology department to undergo investigations for my funny turns & faints – the symptoms of a malfunctioning nervous system, common with EDS. I was inexplicably nervous – particularly when I think about some of the major operations I have had over the years. Maybe it was the thought of having my symptoms induced or worrying that the tests might be negative and I might have to start convincing everyone that I’m not imagining my symptoms.
Anyway we arrived at lunchtime, me having starved for the obligatory number of hours, and the first test was an echo ultrasound of my heart. The first thing to establish was whether my scs would interfere with the scan as it did with the 12 lead ECG on my last visit. I perhaps should have been more concerned about my joints as I managed to pop my shoulder out whilst lying on my side, scaring the young sonographer silly as it literally “popped”. Not a good start before the tilt table as a sling was hung from the very same shoulder to support some of the machinery! The ladies performing the test were most concerned about my pain and my ability to stand still for long enough – I was instructed not to be brave. At this point we didn’t know if I would be able to keep my stimulator on or whether it would interfere with the heart trace. Happily there was no interference, so at least I would be able to keep my leg pain under control!
The first part of the test is easy – provided lying flat isn’t an issue (I managed) – lying on the table and being monitored for about 10 minutes. The next stage would normally be to be tilted up to standing – yes I was strapped on – and monitored for a further 20 minutes prior to GTN spray being put under the tongue, ahead of the final monitoring after the blood vessels had dilated. So great care was taken to elevate me gently to avoid jolting my back….and within seconds my vision was going, my blood pressure dropped, my pulse jumped and I started to heave! With this heaving apparently my BP dropped too low to measure and the student thought I was about to throw up over her. The next thing I was aware of was being flat and being told that this was the quickest and most dramatic positive result they had ever had! The same thing happened when I was slowly sat up 5 minutes later, so the test needed to go no further.
Not looking quite my best today! The ECG is attached to one pad on the chest wall and via a lead to another pad below the left armpit. The monitor can be unclipped to shower.
I was sent home attached to a 7 day ECG monitor which I need to activate every time I have palpitations, sweats or dizzy spells and am due back to see the cardiologist on Thursday presumably to talk POTS (postural orthostotic tachycardia syndrome). This morning I woke with the headache from hell and have been so tired, and I’m also feeling slightly paranoid about when I am pressing the heart trace button on my new piece of equipment -did I really feel something?? For the next few days I will be filling in a data diary and be even more wired than usual – with electronic gadgets that is!
Read fellow zebra Capricious’s account of preparation for autonomic testing here: https://zebrapit.com/2018/02/13/autonomic-testing-jitters/