Do I get the rant over with now?

Do I get the rant over with now?

Yes, I probably should.  Did I mention that I am a Registered Nutritionist?  I studied for 4 years and then worked in the field of evidence based nutrition for quite a long time (in Government Departments in the UK mainly) before going freelance.  There are a lot of people out there calling themselves nutritionists and a whole chunk of them are not regulated in any way, some believing wholeheartedly a load of stuff that quite frankly can in no way be healthy or fix, cure, detox anything.  Some make a lot of money out of following theories that are pure pseudoscience or some misrepresented science, some of which comes from practices of charlatans that really don’t care that their theories are flawed. As you may guess that can annoy me a bit.

Of course some nutritionists that are not registered can be excellent and some that are registered bad at their job – so I don’t want to offend people who take care about the advice they give, research thoroughly and understand the responsibility they have giving people advice that could affect their health.

I like this graph – it shows how someone with a little knowledge can be the person most easy to listen to because they have a confidence that far outweighs their knowledge.

Image result for dunning kruger effect graph

The experienced nutritionist will often answer the question with ‘it depends’ or ‘for most people it is this way but for some…’ – there is rarely complete black or white.  But for someone who has not learnt the complexity of human biology and science generally, it is very easy to be very sure and give simple absolute messages.  Some of which are really not balanced or healthy.  But at the same time very appealing.

To read some examples of the dunning-kruger effect in the nutrition world being torn down then have a read of The Angry Chef blog – out to challenge pseudoscience in the world of food.  He also demonstrates the other known phenomenon he refers to as

Brandolini’s Law, stating that –

‘The amount of energy needed to refute bullshit is an order of magnitude bigger than to produce it.’

If you don’t mind a bit of swearing then Angry Chef is a great read – he rants well.  I share a lot of his frustrations.

My shared frustration becomes greater when pseudoscience is aimed at people with long term health conditions.  And here begins my rant proper.

I have no problem with sharing your own experiences with a view to help others.  Isn’t that what I am doing right here!!  And no, I don’t want to be all smug and self-righteous that I am a proper scientist so clearly I am superior.  IC is a condition that science really hasn’t got fully to grips with, there are still big questions about what causes it, everyone seems to respond differently to treatments and diets.  So there is scope for people to say that they did things and it made a difference for them – science or no science.  Some complementary therapies are going to help and we won’t know why – and as long as there is no risk of harm who cares if the person is feeling benefits.  But – oh yes there is always a but…..

My anger started with extreme exclusions diets. They made me angry.  There was just no way people could really have a balanced diet on some of these diets.  This is not exclusive to IC but also for MS and cancer to name just two.  People could really feel unwell on some of these diets followed to the letter, cancer patients have died when they needn’t have.  Not to mention having the joy of eating and socialising around food stripped away.

An honest blog about someone trying something and feeling better is one thing, suggesting it might help someone else. I struggle with the ‘I did this and my x is cured, so now I am an expert, buy my book/supplements/products/therapy sessions – this will work for you’.  These theories should be tested and assessed in a scientific way, if they are so miraculous then let us explore the hows and whys, refine the theory make it better. Assess the downsides and minimise them.

We would be told there is no need – this doesn’t work in conventional science, people are following the regimes and they are happy, it is working for them, their testimonials are evidence enough surely? Or naively – look at me as the proof.  Sorry but a sample size of one, with no control group or any control of other important factors cannot be evidence.  That is anecdote, not evidence.  Who is following the people who tried the regime with no benefit?  And often someone is making money, so why would they want to question it.

It is the usual suspects getting bandied about – the leaky gut, candida overgrowth, the evil that is gluten, sugar and dairy, we are being poisoned by chemicals, GAPS diets cures everything, the nightshade family of vegetables, paleo diet is also miraculous etc.  There are scientific reasons to question the plausibility of these theories and there is reliable reasons why some of the resulting diets could have detrimental effects on health and well being, particularly in the long term.

Just because some idea has started with some logical premise doesn’t mean that it would stand up in the face of decent scientific testing.  Just because a few people believe that this thing they have done worked for them (this thing that no-one has objectively investigated to see if the thing that was changed was really the cause of their improvement) doesn’t automatically mean that it will work for everyone.  And some of these blogs can be so sure of themselves, so absolute that the person who hangs their hopes on this regime but for whom it doesn’t work is left feeling worse for having tried, more depressed with their condition, feeling inadequate that maybe they were just not sacrificing enough.

And this is the thing.  I am a sufferer of IC.  I am that vulnerable person.  I want that cure.  I want to be symptom free.  I want to believe that if I did this thing or ate that food or took that supplement I would get the bladder of my dreams back.  I question whether I am just too lazy to give these regimes a go and that if I sacrificed enough then maybe I could be fixed.  If you are in pain, if your day to day life is pulled apart because of the effects of a condition, you are in danger of being tempted into doing all sorts of things that a rational, well individual would not.  Pay silly sums of money. Take herbal supplements that are not required to pass rigorous tests in the same way as drugs because they are considered to be food.  Follow crazy diet regimes that are no way healthy in the long term not to mention impossible to enjoy.

But I have my head rooted in evidence based science.  It is impossible to set that aside.  I sometimes read these blogs or diets or adverts for a supplement and I am tempted.  Then I run my test.  Does it sound too good to be true?  Is someone making money out of this advice, is there a conflict of interests here?  Is there a risk of harm or any negative effects with no certainty of benefit?  Is there any evidence at all that might sway me?  Generally, the answers to those questions lead me to ‘not trying that then!!’

Angry Chef – could I borrow Captain Science and Evidence Warrior to help me out here!!  I need them.  You and your team could widen your net to pseudoscience aimed at us poor souls with weird rare conditions that no-one has heard of!!

IC limits your diet naturally – there are foods that aggravate the symptoms without a doubt.  There are foods that seem to affect most IC people and others that seem to be a problem only for some.  But more on diet later.  I think it is also important to remember that the symptoms are influenced by things other than diet which makes identifying problem foods hard and why diet alone, for most people, will not fix IC entirely.  Of course there will be some people who feel that diet alone works for them but there is no guarantee that following a diet will work for you just because someone said that it worked for them.

I don’t want to sound a killjoy – that there is no hope. Of course there is and I know things work even though there is no evidence.  If something works for you and does you no harm then go on and do it.   Enjoy that it works, share what works but don’t give the impression that it is a miracle cure that will work for everyone. Don’t peddle false hope. It may be your miracle but it might be someone else’s pipe dream that leaves them disheartened.

But be responsible on how you share what works for you with the world.  Don’t try to explain it with pseudoscience and make it sound all legitimate if there is no evidence. Be honest. I think there needs to be a lot more responsibility and care by bloggers in this field. I think the backlash on clean eating and the effect that this style of wellness blogging could have on those with a susceptibility to disordered eating should be widened.  Wellness blogging to other vulnerable groups has to be responsible too – in some ways it is even more important.

The real distrust in science is not good but there seems to be a move to challenge that and regain public trust in what good science tells us and also how science is communicated.  That is so important.  Scientists connecting with the public explaining why good science is important and what it looks like when science is done properly. How to differentiate good, sound information from bullshit.

I know there is a lot of debate about how to interpret data. Opinion can change, science can be flawed, it can take a long time to get to a concensus, sometimes scientists can be biased or worse still encouraged to show findings in a particular manner depending on where the money comes from (or the funders present the findings in a particular light).  But scientists are generally seeking the truth and follow the methods that aim to control for bias.  High quality science will expect scientists to highlight where there may be a conflict of interests.  And then of course, pooling evidence together in large meta-analysis to get a stronger, more powerful sense of what is truly happening and iron out any blips in the data.  Science is more reliable than bullshit. Fact.

Unfortunately, bullshit, with its absolutes and its simple messages often wins the battle of hearts and minds. And remember, ‘the amount of energy needed to refute bullshit is an order of magnitude bigger than to produce it.’

Advertisements
What do I want this blog to be?

What do I want this blog to be?

I started this blog a long time ago and I didn’t really know the answer to that question.  It was when I was first diagnosed and was trying to get my head around the whole thing.  The blog kind of died a death.  However, had I kept it going, it would have been a blog asking a lot of questions, a lot of me sharing my downs and symptoms, seeking support, venting.  An electronic journal I suppose.

Six or seven years on, I have learnt a lot about myself, the condition and ways of dealing with it.  I have had more experience blog writing with my nutrition blog and got a little more adventurous with social media.  I have seen some really great blogs and social media folk using digital media well and others that peddle information that is harmful or unhelpful.  So with all that experience plus the day to day dealing with life with a long term condition, I want to have another crack at this blog.

Rather than being a place for sharing my journey which was the reason I started, I want it to be more dynamic and helpful than that.   I want it to be a place of interesting articles, useful real life tips, stories (with humour preferably – please share).  Pointers to helpful websites that are grounded in science or reality.

I am not promising a cure.  I am not saying do what I do and life will be perfect.  This is not a ‘look at my weird diet and strict lifestyle, now I am cured and you can be too!’.  There is too much of that around.  I want it to be real.  I don’t want people to come to this blog and set off on some crazy quest that leaves them feeling inadequate and unhappy because they are not feeling any better.  But worse than that, feeling that somehow they are inadequate as well as ill because this person on this blog says that what they are doing will work  – so if it isn’t working then perhaps they are not sacrificing enough for the pursuit of healing.  This will not be a place for extreme remedies that may do more harm than good – there is a rant brewing on that topic!!

As a Registered Nutritionist with the AfN and as there is a link between food and symptoms, I want there to be stuff on food and some recipes here.  No extreme diet.  There is some agreed foods that seem to aggravate IC and some foods that are pretty safe.  Everyone is different.  We mustn’t lose sight of the importance of eating well whilst trying to minimise food related symptoms.  Eating well not only means feeding your body with a good balance of nutrients by eating more of the foods we don’t generally eat enough of and watching out for those things we know we tend to have too much of.  The usual boring messages.  But eating well is also to enjoy food.  When foods have to disappear from your diet or be reduced then eating well gets a bit harder.  It can distort our relationship with food totally.  Bad thing!!  More on that later.

I also want to have a place to say thank you to nice people – shops and restaurants that say ‘yes of course you can use the toilets’ and not ‘customers only, don’t care what your reasons are’.  The nice things friends and family do and say that really help.

Raising awareness is important.  People often have no idea this condition exists.  They may have an inkling of what it might be like if they have had a bout of cystitis. And, no cranberry juice won’t help with IC!!  As a result, people don’t know how to help or understand why you might be asking for a favour, don’t understand why some everyday things are a challenge.  How people react when you are having a bad day makes a big difference on how easy it is to cope with the symptoms.  Unfortunately, people are reluctant to talk about bladders and toilets and stuff – with perhaps the exception of little boys who find any talk of wees and poos all rather funny!!

How does that sound?  To me it seems I might have bitten off more than I can chew.  I hope any readers will enjoy.  I don’t promise a cure, but I hope what I have to say is helpful even it is just a soothing ‘you are not alone’ balm, or maybe a suggestion of a new way to look at a problem.  Even if you just laugh at the nutty things I attempt to do with a broken bladder, (run a cub camp for example – why would any sane person with a perfectly functioning body choose to do that let alone someone with IC).

 

I would love to get some guest blogs from urologists, well qualified health care professionals and complementary therapists (members of Health Care Professional Council or similar respected bodies please).  I won’t be including anything that I think is promising too much for the evidence that is available, that is likely to break the bank for little gain or has negative effects that outweigh any promise of benefit.  And any stories from the research world that I can share in lay persons language.  Maybe there are new treatments or potential cures out there that can encourage us that maybe one day people won’t have to deal with IC.

So if you want to share, contribute in any way please make a comment or drop me a message.  I plan to set up a twitter account – should I do a Facebook page too?  Am I getting ahead of myself?

Positive Blogging

Positive Blogging

I have been on many forums and blogs related to IC and similar conditions.  A lot of people are blogging through the bad times, seeking help when things are tough.  Sometimes they can make for depressing reading – people telling pretty harrowing stories of lives of pain.  Not that there is anything wrong with that, it is helpful for them and some of the discussions have taught me lots.  But I don’t want a blog like that.

I don’t want to talk about my lows.  Rather talk about positive day to day experiences, facing the chronic condition with humour.  A bit of patting myself on the back for overcoming challenges and keeping it up.  If that cheers someone up and makes them see that there is life with this little beast trying to spoil the party all the time then great.

That doesn’t mean I don’t have my down days.  I don’t want fellow sufferers reading it and thinking, she probably doesn’t have it bad.  She can’t have. (Not that this is a competition of how bad our symptoms are).  My urologist has described it as a severe case and severely interferes with day to day life.  I just don’t want to make that the focus of my blog.

I have a choice.  To lie down and let IC take me over.  NEVER. (Well, maybe I let myself have a little cry now and again and stay at home on the couch, with regular loo breaks obviously, reading a book or with some crochet). My choice is to get on with life and do the things that makes life worthwhile for me.  Always!! Some adjustments are required, some support needed (thanks husband, kids, friends and family), some grit and lateral thinking.  And a bit of honesty – with myself (which can be hard) and with everyone around me.

I want to share the positives, reinforce them for me, focus on that.  It has to help. Share your positives too and funny stories.  I feel a need for some toilet humour! Little observations that only people who need to use the loo as often as me would notice.  Like how annoying is it when you can’t find the end of those loo rolls in public loos that are enormous and you spend 10 minutes rolling the thing around with your finger tips getting attacked my the metal serrated edge meant for cutting the paper – worse than losing the end of the sellotape.

I also want to raise awareness and get people who are professionals in various fields to give information and comment on information flying around on the blogosphere.  Like lots of long term conditions that don’t currently have a cure, there is a lot on the web that gives out ‘cures’ or describes things that ‘worked’ for them that have not been assessed by any health professional.  But more about that in another post.

 

 

I am a registered Nutritionist with the AfN so it is safe to say I like my food.  I have another blog so do have a look.  IC means watching what you eat so maybe a bit of sharing of recipes could happen too.  I think another post on food is necessary.  Ooh the list is growing!!  So much to write about, so little time, so many loo visits in the way and I have a cub camp to organise for 2 weeks time…..yes camping with IC, yes I do think I am crazy.  Honest, cub camp is fun!!

French toilets – or the lack of them

French toilets – or the lack of them

Image result for toilettes publiques paris

Moving to France has been fun in many ways.  I love my local market and French markets generally, I love the boulangeries and the cheese is pretty good too.  I like the buildings and I like the challenge of learning another language.  It has been a thing that I am so happy that we did as a family and that I did in spite of the IC.

IC brought its challenges of course –  it meant I had to have a crash course in the way the French health care system worked which with only basic school girl french was interesting.  Thanks to some very helpful bi-lingual new friends I got it sorted.

But I have to say one thing that France is really not so great at.  That is the public loo!!  Seriously!  Many public loos in Paris are those push button, door opens, you lock it and then out you come whereupon it shuts itself up for 5 minutes to clean itself.  So if there is a queue it could take far too long for a person with IC to wait.  Or the are ‘hors service’ – out of order.  The ones in stations can be truly disgusting, they get blocked but people (sometimes the homeless who to be fair have no where else to go) still use them until they are so gross.  But it is not the job of the station staff to do anything about it so they can stay in that state for weeks.

Many loos have no toilet paper – like never have paper – everyone carries little packets of tissues in case the need to use a public toilet arises.  Some have no loo seats, even in nicer public loos.  There are many stations with no toilet at all and the RER trains have no toilets yet can have fairly long journey times.  If you jump off at a station there is no guarantee that you will find a loo easily.

In bigger train stations following the signs to the toilets can be a nightmare too.  There is sign pointing to toilets and then all signage disappears and no toilets appear.  Arrgghhh!!  Often you have to pay to use public toilets in bigger stations or shopping centres but generally those you have to part with 70c for are pleasant and clean with seats and paper!!

In the UK, I know where I can easily walk in and ask (or just use) the toilets.  In Paris I have absolute refusal and disdain.  And places that I would expect there to be a toilet there isn’t one like some multi floor large stores.

Add don’t stop at a French Service station on the autoroute at lunchtime!!  Everyone will have stopped for lunch, there will be no place to park and there will be the most horrific queue for the toilets.  When you finally get into the toilets there are only about 5 cubicles.  I have often walked into the mens (along with plenty other women) otherwise I would crumpled in pain!!  Once upon a time the autoroutes were so empty that the small service stations were perfectly adequate but now there needs a bit of expansion, especially in the toilet facilities!

One saving grace is that I have a very useful card, issued by the French Cystite Interstitielle charity, with my photo, an explanation of my condition and my urgent need for the use of a toilet and generally people are very helpful.  Without that card would be a challenge indeed.

So if you come to France, have plenty of loose change, a packet of tissues and consider contacting the Association Francaise de Cystite Interstielle before you come if you suffer from urgency.  You may have to pay to join and fill in a couple of forms, but I am sure they would be happy to arrange a card.  Always worth asking especially if you visit France regularly.  I get to use staff toilets in shops and train stations as well as in hotels and restaurants where I am not a customer.  People are generally helpful, sometimes you get a gallic shrug but you get to use the toilet!

The men among you may not find it so hard as there are a few of these around the place…

Image result for urinoire publiques paris

The toilet guru

The toilet guru

I am the toilet guru. No really I am. Any place I have been the places that have facilities are imprinted forever. I know where there are friendly coffee shops, department stores, public loos. My standards are low. You won’t hear me say”I’m not going in there’. Well there has been once in Charles De Gaulle Etoile RER station, one of those automatic push the button to go in ones so popular in France. It was so bad.  But generally, if I have to go then I have to go. It hurts not to go, like really, really hurts.

So you learn to walk into coffee shops and fast food restaurants and pubs, head held high with purpose and walk straight to the loos. You learn that at service stations on British motorways, it is quicker to follow signs for fuel as there is always a toilet there and you can park closer to the building and you don’t have to walk all the way through the plethora of shops and eateries to the furthest point of the services to get to the toilet. 

Always have a pack of tissues for the no loo paper scenario. And if there is a queue then I don’t feel guilty to use the disabled loo, I may not be eligible for a blue badge, I may not have a mobility problem but this condition is an invisible disability. I have noticed that more disabled loos have the tag line that not all disabilities are visible which is helpful.

I will ask in a shop without a public toilet if I can’t be sure of where the nearest public toilet is and some shop staff are really lovely. Petrol stations in the UK very often have public loos so if you stop at one and it doesn’t then generally they will let you use the staff one after an explanation of the problem.

It can be a big barrier doing things when you never know how frequently you might need the toilet and where the next loo might be. Building up a mental map of how to get around the problem and having the confidence to ask is essential in life with IC. So I continue to build my toilet guru skills. I should start a toilet rating, a IC friendly point system. France would score badly but that is another post by itself.

IC = Interstitial Cystitis

IC = Interstitial Cystitis

I was diagnosed with interstitial cystitis in October 2012. For over a year, every bout of cystitis came with a negative test for infection. Next the possibility that I had overactive bladder but after the medication didn’t work I was sent off for a rigid cytoscopy and hydrodistention. Diagnosis – interstitial cystitis (which is a nightmare to type so from here on in it will be IC before I break the delete key!)

Anybody who has had a bout of bacterial cystitis will know how painful and how inconvenient it can be. With IC there is no infection, the bladder is inflamed and at risk of ulcers as the bladder’s protective lining is broken.

Urine is an irritating fluid which can be acidic and contain compounds that are irrtants, including break down products from metabolising the food we eat. Therefore, there are a number of foods that are consistently reported to be problematic and loads of others with big question marks by them.  I have limited some foods to see if I can manage my symptoms through changing what I eat – I have an advantage as a nutritionist.

It is important to say that this is reporting of my own situation and not specific professional advice for fellow sufferers. What works for me will not work for someone else. I will be guided by my professional knowledge – keeping my diet balanced and ensure that I am eating well (not just nutritionally but also enjoying my food and that cooking and eating fit in with my family life). I hope that fellow sufferers might be able to use the information I find and my strategies for working out what affects me useful.

I also want to use the blog to keep useful or interesting web-links, investigate other treatments and consider other strategies that may help manage the condition which has become quite challenging, making simple things like travel stressful (for someone that has travelled around the world twice with her life in a backpack this is quite a trauma!!)

I found it quite hard to discuss everything with my consultant so I hope that others will be helped to better able to ask the right questions and make the most of their care team.