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FREEEDOMMMM!!

I’ve been struggling quite a bit recently, what with the weather etc… although I couldn’t help but smile when I heard the weather reporter use the words ‘looking autumnal’ during their weather report the other day.

I’m sure its just a flare up with my stomach or perhaps some sort of bug – whatever it is, I hope it’ll clear up soon as its only been two weeks since I last took antibiotics and I was rather hoping for at least 4 weeks before the infection comes back.

On a more positive note; I did something truly strange yesterday evening. I picked up my car keys, put on my shoes and said to my parents “See you later, I’m just popping out…” The last time I did anything on my own was well over a year ago, whatever I do, I have always had someone with me – even to simply go along the fields over the road for a walk, or to post a letter in the village post box; for the past 14months I have not been alone.

I set off and it just felt incredibly strange, yet ‘normal’ – After doing my best Braveheart impression “freeedoooomm” while driving up the road, the silence of being alone was amazing. I didn’t go far, but despite the short distance, it was a massive milestone!!

“on the road again…”

Quite some time ago I gave up driving, it simply wasn’t safe and I thought it stupid to even risk getting in my car; so I sold it. Partly to remove temptation, but also to save money on insurance etc, for a car that was just sitting in the drive.

Months went by and as I entered into this year, what with learning about my limitations, and learning to life within them, I began to feel that I might, on good days, feel up to driving again.

On my last consult with my POTs specialist, I enquired about driving again, and was told that it shouldn’t be a problem, but the DVLA should be notified of my conditions. Buzzing with the prospect, I immediately filled in the correct form and posted it to the DVLA, months went by without a word, and I grew concerned – what if they said no? but last month saw a letter land on the doorstep giving me the OK.

My parents added me to their insurance and since the beginning of this month, I have been back on the road. I always have someone with me just in case its too much, but so far things are looking promising. I find my pots is tolerable sitting down and provided I don’t have the radio on or talk to much, then I can concentrate while driving, and of course the air conditioning stops me from facial flushing and burning up while driving.

I’ve managed a couple of longer journeys already this month and I’m now looking into getting a car of my own.

The summer is here…

I’m just about getting used to staying indoors and avoiding the sun. Over the past couple of months I have come very close to having seizures on numerous occasions from the sheer heat and humidity, but air con has been my saviour.(the only seizures I have had seem to be cause by the stomach infections when they return).

I live in my office throughout the day with the aircon on only to briefly leave to get a drink or food, within minutes on the hottest of days, the pressure in my heat increases and I feel myself getting dizzier by the second. A hasty retreat back to my room soonrelieves things.

Obviously as good as the aircon is, I just feel trapped in the house. To stop myself from insanity, I tend to head out for a bit of a walk in the evening when the sun is setting and has next to no heat. As hard and as breathless as it usually is battling the humidity, it is certainly worth it!

A fairly good 4 weeks.

The Augmentin did the trick. It took me a good 8 days to get the antibiotics out of my system, but although it hasn’t been perfect, I have had a good few weeks stomach-wise.

Sadly (there’s always a but…) the last few days I have felt rather nauseous, the night before last I had a pots attack at the dinner table brought on by the heat from my plate of food (this illness really does seem ridiculous at times) but I made it upstairs, put the aircon on and within 15mins the attack was over. I felt pretty horrid and heady all evening and had an earlyish night.

Yesterday my head pressure was immense, the nausea was a great deal more intense, and I simply struggled to do things much more than normal. With thunderstorms in the afternoon; the air pressure certainly wasn’t helping and by the evening I was so sick of my head ache and pressure that I decided to try to get some fresh air.

On returning from the very short walk, things started to deteriorate and it wasn’t long before my head was pounding and my legs were twitching… not a good sign. I opted for laying on my bed, but despite my best efforts I was soon having a seizure! Afterwards was just complete agony, my EDS in my joints was unbearable and it was as much as I could do to drag myself around, supporting my own bodyweight was almost impossible.

Another earlyish night last night and this morning has been another unbearably heady one with a painful stomach… aha! a quick check of my diary and today has been 4 weeks exactly since I finished the Augmentin… head pressure, nausea, head aches, more potsy than normal, bad stomach… looks like the bacterial overgrowth is well underway again.

As I write this now, my head is spinning and its as much as I can do to see the screen properly so please excuse the grammar and spelling in this post. I’m in a lot of pain with my stomach, so I am unsure whether I should wait for the oily stools that confirm the infection is back, or whether I should just listen to my body (which seems to follow the same pattern every time) and phone my GP tomorrow to get some more Augmentin…

Antibiotics, antibiotics, and antibiotics…

I apologise as I have not written a post for a while. Since my last update, and at risk of sounding like a broken record, the Doxycycline didn’t work and I had to wait a good ten days before I could attempt to try yet another antibiotic for the bacterial overgrowth caused by the slow EDS mobility of my bowel.

Determined to make sure that I kill it off this time, I opted for a rather brave ten day course. 2 tablets 4 times a day, no milk, nothing to eat 2hrs before or 1hr after. This meant that I was always digesting the dose on an empty stomach. Painful is an understatement!

By day three my stomach was beyond sore, and my POTs wasn’t taking any prisoners either – I’ll admit I had no idea how I was going to last out the full ten days! However, with my mind set, and with the help of pain relief and strong anti-sickness tablets, last Thursday I finished the course… and as that broken record skips around to play the track again – yes, sadly despite all the suffering this past ten days, this too doesn’t appear to have been enough to kill off the overgrowth.

I have recently received copies of letters to my GP from Prof Aziz, the first of which listing alternative antibiotics to try (this latest course was one of those mentioned). He also wrote that; some trial and error would be needed when trying to find the right antibiotic.

In the last letter, he recommended going back to a course of the Augmentin; the very first antibiotic I had, which is the only one that has worked. Yet again, it also didn’t work on the third course. However, it’s been a while since that third unsuccessful course, so hopefully it’ll work this time.

I shall hang out until Thursday of this week (that will be a full week since finishing the latest course of antibiotics) and I shall phone my GP to see if I can start a ten day course of Augmentin. It’s got to the point now that I don’t bloody care how unbearable they are to take, so long as putting myself through ten days of hell is rewarded with a few weeks of infection-free bowel at the end!

Living life FODMAP free!

As I write this I am currently one day away from finishing another course of antibiotics for the bacterial overgrowth in my stomach. Fortunately, unlike the Ciprofloxacin and Neomycin, this latest one (Doxycycline) hasn’t had a severe side effect. As with any antibiotic, my pots has flared up and I’m much more dizzy than normal, and my stomach is in a great deal of discomfort due to the nature of where the antibiotic is tackling the infection, but both of those I can put up with.

Previously, the Ciprofloxacin lead to an allergic reaction and a frightening night struggling to breath, so that ruled that one out. The Neomycin lead to very bad diarrhoea, which left me dehydrated and my pots soon plummeted, so I had to end that after only three days. The clear out caused by the diarrhoea must have cleared the bacterial overgrowth too, because I then had 5 weeks free before the overgrowth reoccured and here I am now, taking Doxycycline. It’s much more tolerable for me than anything I’ve had before, including the Augmentin, but until the POTS side effects of the antibiotic wear off, then I don’t know for sure how successful it’s been at tackling the overgrowth.

On Prof Aziz’s recommendation, I have also started a new diet. A ‘low-FODMAP’ diet. It’s relatively new and something that MUST be done with the guidance of a professional dietician, but so far has made massive improvements to the EDS discomfort I suffer through the digestion of food. Im sure you’re think A low-FOD… what!? I know I did!

It’s basically a diet intended to help those who suffer with IBS (irritable bowel syndrome), but a lot of the EDS symptoms are much the same; diarrhoea and/or constipation, bloating, distension, abdominal pain and discomfort, wind or flatulance. The following details I sourced from a booklet my dietician gave me.

Food is made up of different components, such as carbohydrates which include sugars. Some of these carbohydrates (FODMAPs) do not get absorbed in the small intestine, instead they make their way to the large intestine where they are fermented by billions of bacteria, thus causing wind and bloating. Diarhoea can occur due to an osmotic effect which increases the amount of water in the large intestine.

F- fermentable
O- oligo-saccharides (fructans & galacto-oligosaccharides)
D- di-saccharides (lactose)
M- mono-saccharides (fructose)
A- and
P- polyols (sugar alcohols)
s

Reducing these FODMAPs has been shown to improve gut symptoms. FODMAPs are actually poorly absorbed in everyone, its just that the side effects can be worse for those with IBS, and the side effects are painful and cause great discomfort with my EDS.

Jumping away from the scientific jargony bit. FODMAPs are unfortunately found in a VAST AMOUNT of foods. I seem to spend all my time reading labels looking for words like fructose syrup, fruit juice concentrate. It gets so confusing that I find I constantly refer back to the great booklets that my dietician gave to me.

What do those words mean? Well for a start, lactose free and gluten-free, they’re the big ones that most people will know of. After that, its down to the nitty gritty. Everything needs to be checked; as I can’t even have everyday things like; broccoli, cauliflower, onion, garlic, beans, etc etc. Fruits such as stoned fruits, apples, pears etc. Drinks such as fizzy drinks, cordials with fruit concentrate in them.

Put bluntly, its a bloody nightmare!! BUT and this is big but, eating food and not feeling like you have have a 24hr bug every time your stomach churns and rolls around as it digests the food, or stabs away inside as the gases make their way along the intestine, is, after years of suffering, worth giving up so much of this food!

I had hoped that the diet would also stop the recurring infections, but sadly this is not to be. I spoke with Prof Aziz on the phone last week and I will need to stay on this diet and then take regular antibiotics for the bacterial overgrowths as and when they come. But for the meantime, this diet, although in its early stages, has made a big improvement on my in-between times, the times when I’m not infected.

Its not all bad though. I have found lactose free milk, which is great, and a gluten free spaghetti, which is not as rubbery as some others. I’m getting used to what I can, and can’t have. But thankfully we cook all of our own meals so its not actually that much of an issue. Chives are a perfect substitute for the same flavour that onions would give, but once you look EVERY brand of gravy we have looked over uses onion/onion powder, so my gravy is now made by using stock and thickening it with corn flour.

I even went on the hunt for a substitute for pickle, no word of a lie, we went to a farm shop and must have looked at 30+ different pickles. The poor lady in the shop was helping look…

“apples?” she’d ask

“no I can’t have those…”

she picks up another… “this has garlic..?”

I look up from my jar of pickle, “nope not that either”

“what about this one… oh no, onions!”

There was only one that was ok – thankfully it tastes ok too!

One thing that annoys me is the prices shops charge for gluten free and lactose free produce, its ridiculous!! even for a packet of biscuits! They can’t seriously suggest it costs them that much to make the stuff!? Fortunately I just buy the right flour and bake all of my own cakes and biscuits at a fraction of the price – and I may be bias, but they taste a WHOLE lot better!

I have also seen in my booklet that I AM allowed a small amount of chocolate per day, as it is in fact low in lactose – That’s good enough for me! Roll on Easter.

DINET – POTS documentary

A fantastic documentary by the american POTS organisation (DINET). It’s fairly long, but is certainly worth watching, so you might just want to make yourself a brew first!