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Opticians, Pain and Stomach Problems.

November 22, 2011

A lot has gone on in the last two weeks since my last update. As I write this, I am unfortunately back on the antibiotics for my stomach and desperately counting down the days until I complete the course.

I guess I should start with the journey back from the Lake District. Put simply, it was hell. I laid in the back on the way there, but that was no longer an option due to travel sickness. I just about put up with it on the way there; albeit ending the journey with a seizure. Therefore the journey back was to be one sat in the front – good for travel sickness, but very bad for blood pooling and the POTS!

Every 30mins I had to get out of the car and walk about to get the blood pumping back up through my body. Eventually the length of the journey and little time to recover at each stop, really wore me down, and it just became an unrelenting battle to stay well.

The following week I continued to suffer for the little that I did in the Lake District (which was obviously still too much!) and I spent the week in a great deal of pain and very potsy.

That Saturday I had an opticians appointment, and had found a new sense of courage after solving problems and pushing through the attacks that I had experienced in the shops in the Lake District. However, I was still a little apprehensive how I would cope, especially with the fact that there was no escape should I need it.

I guess its like saying to a claustrophobic, “Go and stand in that cupboard, but if it gets too much, you can leave at any time”. That’s the mentality that got me through the shopping in the lakes, enter a shop, and leave when it got to much.

Today was different, today was more, “Go and stand in that cupboard, and I’ll let you out in 20mins time…” All of a sudden you’re tied into the situation, I would need to last the whole eye test, even if it got too much, and then I would need to walk round and choose glasses… obviously if it got too much I could stop the test, but that’s not the same.

We opened the door of the opticians and I was immediately punched in the face by the sauna-like heat. “Oh dear, this isn’t going to be easy” I thought.

The staff were truly excellent, I had a seat and even laid on the floor at one point. The optician kept the door open during the examination – albeit a pointless attempt to keep the heat down, but it was a thoughtful gesture all the same. He even assured me that we could stop as soon as I needed too. Better still though, he also sees three other patients with EDS, so we had a good discussion about my eyesight issues and he assured me why and how the EDS causes those problems. It’s always reassuring to find someone who understands things – even if the POTS side of it was new to him.

It was a battle to deal with the immense heat, and I think it was due to the heat, that caused my heart rate to go loopy that evening. Dropping beats, adding beats. It truly is an awful sensation. Its like the feeling of tripping up something and your heat skips out because you almost fall over, combined with the sensation of turbulence, when a plane drops in the sky. Topped off by the feeling that someone has grabbed your organs and given them a sharp tug down. But all this happens whilst sitting down, not moving. And that night it lasted for hours.

Adamant that I didn’t wish to waste anyones time, I went to bed in the hope that by the morning things would be better… yeah right. Good one!

It continued through the night and I didn’t get any sleep. By 10am Sunday morning, I was having a seizure, and I thought it best to get my heart checked by the ECG that the ambulance crews carry with them. I had friends visiting for the morning, so it couldn’t have come at a worse time!

It would appear that the seizure had reset my heart rate back to normality, but a day wasted in A&E still followed.

Now we get to last week.

It started with one evening the beginning of the week, rolling around in complete agony, sweating and feeling sick to the stomach through pain. Pain which I couldn’t escape. Pain in my stomach.

It lasted for a good hour, and then every 30mins after that I had to rush to the loo, thinking that I was about to explode with diarrhea, only to reach the toilet and not even break wind!? I couldn’t understand what on earth was going on. Yet again, time after time the urge came, but nothing happened.

The following day, the immense pain was now a twisted pain, similar to that which you would get with a normal 24hr bug, but again, no bowel movements.

It got to about 3pm and the immense pain began to return, so 5pm I was at the surgery, getting a check over by the GP. She explained that it may well be down to the EDS, but I was wise not to just assume it wasn’t anything more serious.

The following morning, after two days without a bowel movement, I woke expecting constipation, but nope, my stomach was officially back to its old ways. All my symptoms were back, the reflux, nausea, taste in the mouth, loose bowels – the list goes on.

It’s rather strange to phone your GP, state your symptoms, diagnose yourself, and then ask them for a particular medication, and wait for them to say yes…

After explaining that I thought my EDS stomach infection was back, I then explained all my old symptoms that I’d had for years previous to the new drugs Prof Aziz had put me on, and then asked for another ten-day course of Augmentin.

I am so fortunate to have a great team of GPs, she found Prof Aziz’s letter, agreed with me, and then put through the prescription for the ten-day course of antibiotics.

Thus bringing me nicely back to the start of this blog post. I am currently half way through the course of antibiotics. Poisoning myself with medication, making myself incredibly ill; all in the hope that, like last time, I may have another 5-6 weeks free of stomach infection.

I swear these antibiotics contain some form of Cyanide or Kryptonite, and they also make me unnecessarily angry and short-tempered, which I hate, as it’s not like me to be in that state of mood – but I just can’t help it.

I speak to Prof Aziz next month, to follow-up on how well all of these stomach drugs have worked, so in a way its good that I can explain to him it’s returned – hopefully there may be some other drug which will allow me a little more rest bite in between infections, or better still something that can ward of the infection completely.

That said 6 weeks of relative normality after 10 years of problems in the stomach is definitely a good thing. Roll on Sunday when I take the last of these flippin antibiotics!

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