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“We’re just round the corner…”

July 24, 2011

Ive been really suffering with bad eyesight lately, so the thought of sitting here typing and reading back what ive written, has meant a delay in updating the blog. Its not that i ‘cant’ see properly, its more that I get blobs floating in my vision, and everything just seems far too contrasty. Words appear to float above the page, and if i go from close vision, to looking out of the window, it takes my eyes a second or so to adjust. (and to think that people pay a fortune on back street medications, to achieve these “spaced out” symptoms!)

Fortunately my eyesight, like everything else, takes a plummet into the unbearable levels in the evening, so between the hours of 9am and 4pm are when I use the computer most, but on the occasional days when my vision is impaired during the day, then I don’t work. After all, trying to clean up images at 100% and work out whether the “blobs” are on the image or in front of your vision is enough to send anyone crazy!

Tuesday I had another blood test (having been on the Fludrocortisone for a fortnight) and Friday I went back to see my GP to discuss the results and have my BP taken. The bloods were all fine, so it was good to know there were no underlying problems caused by the fludro. Through talking to other sufferers of EDS and POTS, i’m learning that all these drugs are so hit and miss, that what works for one patient, can cause another to be terribly ill. and then there is also the conflict between certain meds, so some patients never get to try them in the first place.

My GP then took my BP and although it is still in the ‘dizzy’ low figures, it is actually the highest its been in over a year (or since i first went to the doctors a year ago) So although there is still a way to go, its there in black and white that the fludro ‘is’ helping to raise my BP. I have also (dare i say it) not had any seizures in the last fortnight since starting the drug. I still come close to having them, but fortunately they are some how “manageable” now. Its hard to tell for sure, but it appears that, by raising my BP that small amount has proved enough to fend them off.

I go in for my autonomic testing on the 17th of Aug and will obviously need to be off all medications, so for now we wont be raising the dose of fludro until after the tests. Its also apparent from speaking with everyone else, that after my testing in august, my results will go in my file and then wont be looked at until I see the professor at my follow up out patients appointment in January next year. But for now I’m just glad that i have a very helpful and understanding GP!

Thursday I was ‘supposed’ to go for my outpatients appointment at Barts in London with Prof Aziz (the gastro neuroenterologist), but instead it proved to be a day of waiting. The first ambulance never showed, and with less than 2.5hrs until my appointment we phoned the hospital…

hang on the phone…
get through to main desk – we’ll direct you to travel
hang on the phone…
No this is travel ‘bookings’ – we’ll direct you to travel organisers
hang on the phone…
get through to travel organisers

(remember the above, because it became the ritual of the day!)

Jacek informed us that the first ambulance had broken down on route, and the second one had told him that they would be with us just after 1pm. Panicking at the lack of communication so far, mum jumped straight on the phone (or should i say: sat on hold again) trying to reach the outpatients dept, to notify them that: 1, we would be late and 2, would we still be seen.

1:30pm – still no ambulance… so through the above “on hold” ritual yet again. By now Yacek was starting to share similar signs of frustration that we were trying to hold back on. “they are just round the corner” he informed us “but if they are not there by 1:45, please phone me back as i want to know!”

1:45pm – yep that’s right, reading this you’re staring to get the hang of the pattern now aren’t you… back through the above “on hold” ritual and eventually through to Yacek. Patience now running out on both ends of the phone line – not with each other, but with the “we’re just round the corner” second ambulance. 2.15pm was the next deadline.

We tried to get through to out patients, but the lines were down, so fortunately Yacek sent a colleague to the department and phoned us back to say that the outpatients would check with the professor and get back to us.

2:50pm – (10mins before my 3pm appointment in London) still no ambulance… the outpatients department phoned us and basically said that we wouldn’t make it in time before the clinic closes, so would unfortunately lose the appointment, but they would speak with the Prof and get me the next available one out in the post (no idea when that will be…) And we phoned Yacek back, who was so annoyed that he filed an official complaint against the transport contractors.


Next Wednesday I have my first EDS physio appointment at the UCLH so will be needing transport for that, fingers crossed they turn up this time.

  1. Adriana Marks permalink

    Dear Liam
    I hope the physio went well. Good luck on the 17th! We’ll be thinking of you.
    Adriana, Peter and Daniel

  2. thank you!

    The physio, although difficult, has done wonders! Just got to get the testing out of the way next week before I can start trialing medication properly, but things are certainly moving in the right direction now!

    All the best,


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