The thin skull rule

One of the things in life which is most likely to push my buttons instantaneously is the subject of bullying. It upsets me to see it, and excuses made for it upset me even more. I don't think it's anything to do with the usual bullied-at-school background either; I'm the sort of person who (for better or worse) has very hard lines set about right and wrong - and bullying is always wrong.

A situation a couple of years back came up in conversation twice recently and prompted me to flesh it out into a post. It also touches on themes addressed in Divided we Fall, of those who consider they have the right to judge who does or doesn't have any particular condition.

The situation revolved around a group of people picking on one individual. There had been some run up to the incident but it escalated beyond all sane proportions and became downright nasty. It never ceases to amaze me how "brave" people can suddenly be safely behind a modem and keyboard with ten others backing their view up.

The point most relevant to the post however is that when the individual was revealed to have a particular mental and behavioural disorder, it was unanimously decided on the spot that this was a "convenient excuse" and therefore couldn't be true and the bullying not only continued but intensified.

The phenomenon of cyber bullying achieved national attention in the UK when it formed part of the campaign for 2013's Red Nose Day. The subject highlighted in particular was those who tragically take their own lives as a result of relentless bullying. Simon's story was bravely reiterated by his family as a part of the awareness campaign, but the picture board of young people who came to the same last resort at the end of the video is probably the most horrifying part of all.

What links the two was the oft-seen aftermath when people discover less then palatable details later on and use the excuse "Oh, but I didn't know!" to attempt to justify their words or actions.

Some may think this harsh but I'm going to take this opportunity to cut right through the rubbish of that phrase. What they mean by "I didn't know" is "I didn't think about what I was saying because I didn't care what the other person might have felt in response".

How exceedingly unimpressive.

(A moment's light relief - let's play "Can you see it yet?" - image from truth4seekers.wordpress.com)

Mental illness and behavioural disorders share the common problem of all invisible illnesses - they cannot be seen. You cannot know by looking at an individual whether their diagnosis is correct, incorrect or a complete fabrication. It is also impossible to tell purely from what a person says or (perhaps more pertinently in this context) what they write.

I'm not discounting the scenario that behavioural disorders of all shapes and sizes are used as an excuse for what is just plain bad behaviour, however I don't believe that knowledge of that potential inaccuracy should equate to automatic assumptions across the board.

Unless you are that individual's treating doctor or specialist you are not imbued with any right whatsoever to judge their physical or mental health. Even if you have the same condition, you are not the automatic authority. There is no such thing as illness royalty and no health government - there is no individual or body of individuals who own the authority to judge others by their own convenience or expectations. I know we've all been guilty of this at some point, but that fact doesn't render the truth any less real.

You're still wondering about that title, aren't you?

(The beautiful Royal Courts of Justice, London UK)

In the criminal law of England and Wales, the thin or eggshell skull rule exists. The rule holds that a person who engages in any activity which causes another individual harm is liable for all the harm caused, even if the victim has any pre-existing conditions or vulnerabilities which mean an unusual level of harm is inflicted, including fatality.

A short and hypothetical scenario applying the rule: you hit somebody on the head and they had a peculiarly thin skull and died as a direct consequence of the blow you inflicted. Ignorance of the abnormality would not absolve you of liability for their death. It isn't murder because it lacks "malice aforethought" (premeditation), but criminal liability for the death is nonetheless recognised and would be upheld.

The general maxim? A quote directly from the Lord Justice Lawton in the conclusion of R v Blaue (1975) sums it up perfectly - "You must take the victim as you find them."

You very rarely know enough about another person to be absolutely certain of the whole truth of their circumstances. Until you do, exercise a little decency and don't be the person who stands in the cold afterwards saying "I didn't know".

Wishing you all many spoons xx

Screw your courage to the sticking-place

("Positively primeval." Image from fanpop.com)

An aside: the title is part of a speech from Lady Macbeth – it also turns up in Disney’s Beauty and the Beast in the song “Kill the Beast”. There you go, a completely irrelevant fact for you. You can't say I never tell you anything interesting (read "useless").

Courage and bravery are ideas I often see discussed and opined upon in the realm of chronic ill health. A few people have kindly told me they think the writing of this blog is brave, not only in openness about grim details on occasion but also in being willing to tackle difficult subjects, from time to time taking the road less traveled by in terms of approach to them.

It’s a concept I find horrendously awkward.

I don’t see myself as a particularly brave person by nature. I’m just a bit too quiet and mild-mannered for that, and for a practical example no matter what anyone tells me about “facing up to your fears” nothing under the sky would compel me to get close to large spiders. I’m not an unusual individual in character really and in writing this blog I’m not creating the textual equivalent of rolling high fortitude saves against life.   

In discussing this idea recently I countermanded it with the fact that I’m not always open about my health. There are plenty of occasions where I don’t talk about it when I perhaps should, times when I’ll smile and say everything’s fine when I actively want to scream, and rarer occasions where I’m faced with ignorance and I simply don’t have the energy to match it.

There’s problem number one – the idea that to be brave, you have to be the same all the time.

The second issue is the idea many are conditioned towards that bravery manifests in one set way. It’s bold and makes itself heard; it batters down any and all doors closed against the cause it champions. It never, ever pauses or falters.

In this guise therefore it is essentially a somewhat inhuman characteristic.

Within the sphere of chronic illness there are plenty of examples of different forms of bravery. It doesn’t have to be flashy or worthy of recognition and it could be entirely personal and appreciated by an audience of one.

Making it out of bed for the first time in a week after a flare up, facing numerous and sometimes fruitless hospital procedures, speaking about your health to someone new, agreeing to a trial a new medication – they’re all courageous acts in their own way. They might not gain the recognition they deserve for being so, but that makes it no less true.

(Poignant. Image from spirituallythinking.blogspot.com)

The one characteristic of mine that I would allow is possibly a brave one is that I've never very often been afflicted by the need to belong to a group, and so I've always had the ability to stand aside from behaviours or ideas I believe to be morally wrong despite of what anyone might think of me because of this failure to conform. This I think has manifested in a tendency for some posts on this blog to be a little apart from the norm of what a reader would maybe expect from a blog about illness. 

I’m not here to tar all healthy people with the brush of ignorance, and I’m not writing from the position of believing all sufferers of chronic ill health behave impeccably and are always right in what they do and say. That would be an easy enough path to travel down, but it’s not the one for me.

I didn't start the blog because I thought it would be a brave thing to do – I started it because I thought I could help. I wanted to show the reality behind all the romanticised or conversely demonised notions about chronic illness and those who suffer with it. I hoped to show that it was normal to struggle and to have bad days, just as it was normal to have better ones.

In summary then I’m going to offer an unpopular idea about the concept of bravery within the realm of illness, because I don’t believe that the loud and brash archetype of courage is the correct yardstick to apply.

Perhaps courage lies in making peace with the situation; accepting that good days, bad days and everything in between are a part of being human.

Maybe the greatest bravery of all is in accepting that you can’t always win, and that in not winning it’s fine to pull off the Boots of Anti-Ignorance (+5 these days, because +3 wasn't quite enough!), hang up the Helm of Brave Face* and live to fight another day.

*In case you wondered, no, it’s unlikely I’ll run out of Dungeons and Dragons references any time soon. 

Whilst I’m talking about recognition, I’m incredibly honoured to say that The Retired Bridgeburner has been nominated in the WEGO Health Acitivist Awards! Nomination are to my knowledge still open and you can find out about the categories and when voting will begin on the link  here.

Wishing you all many spoons xxx

Divided we fall

One of the things I find most perplexing in life is when a community of any sort which is possibly ostracised from the norm (for whatever reason) then starts to divide itself down imaginary lines.

I follow a lot of chronic illness groups, pages and communities. I wouldn't say it’s a common problem but I have certainly seen it more than a handful of times. Usually the factor is age – the idea that you’re not old enough to have whatever condition you have because it’s accepted to be an older person’s disease. Arthritis is the big one for this but it’s perfectly possible to contract it young. Horribly, it’s also been known to appear in children.

(Really now?)

Sometimes it’s faith. I've come across numerous “miracle cures” which claim you must be a believer in order for the cure to work. That I can’t understand at all – if I’d found a cure for a previously incurable condition I’d want to share it with everyone I possibly could. Nobody deserves to be ill after all.

It’s not just present in chronic illness communities either. Glance at any forum, page or group dedicated to music, books or any other form of entertainment and you’ll find it pretty quickly. If you don’t have the particularly obscure bootleg by insert-band-of-choice of which only 27 copies exist on the entire planet then you’re not a “proper” fan. What do you mean you don’t have the first edition of the book signed by the author? What rock were you living under around publishing time? Oh, you only like it because you’ve seen the film. The accompanying sneers and superiority complexes are virtually tangible.

I’m not sure which of those two examples I find more idiotic.

You will know by now the biggest part of my love is given over to books. If I've found a book I really enjoyed I recommend it to friends who like similar things. I love finding people to talk about it with. Recently the culprit is the second book in Scott Lynch's The Gentleman Bastards sequence Red Seas Under Red Skies. As a result I'm all fired up and excited for a discussion of larceny and silliness with anybody who wishes to have it, tipping my fabulous (and imaginary) pirate hat as I go.

I can’t understand why anyone would disdain to talk to someone just because they’re reading something for the first time rather than having read it numerous times and been in the know for a while. What difference does it really make? I pride myself on my knowledge of Tolkien’s mythos (what I’ve read of it, which isn’t everything) but I’m as willing to talk to those who know more than me (A big fan who accepts more knowledgeable fans exist – who’d have thought it?) as I am to those who are currently scratching their heads and thinking “So exactly what is a Hobbit anyway?”

Even more ridiculously, the division can come down to something as simple and inescapable as gender. The redoubtable Angelina of Albinwonderland has spoken about this problem within the comic book community and particularly in relation to conventions. Her video “Fake Geek Girls” is linked below and well worth a watch. She draws attention to the concept of the title and sets about merrily debunking it for the ridiculous sexist rhetoric it is.

("Fake Geek Girls" from Albinwonderland's channel. I recommend watching a lot of her videos, not just this one.)

The thing to remember is that no matter how madly in love with the object of your interest you are now, at one point it was brand new to you, and at some point before that you had no idea it existed. People who don’t know a lot about it aren’t “fake” and they’re not failing to be “proper” fans; they’re just new to it like you once were.

If you can recognise yourself in any of that, I suggest you get down off that rather unsteady high horse you’ve been perched on. One day you’ll overreach, it’ll throw a buck and you’ll come off involuntarily – best to escape with a little dignity still intact, no?

I understand this phenomenon of exclusion even less when it comes to illness.

One of the oft-complained about scenarios I see across communities is lack of understanding from healthy people be they family, friends or complete strangers. The reasons for this are many and diverse and I’m not going to spend this post repeating myself about them. I’m also not suggesting it isn’t something to be complained about – it is frustrating when your situation is dismissed or you can’t make someone close to you understand.

With that in mind, what good does it do to then invalidate others experiences with the same condition just because they fall outside of the sphere of your specific health? How many times are we all going to have to hear the truth of “it’s different for everyone” before it actually sinks in?

Just because somebody is younger than you have encountered before doesn’t mean they don’t have arthritis or fibromyalgia or any other “older” diseases (I’m 24 this weekend and began having symptoms at 22 – my Dad has rheumatoid arthritis diagnosed at 28).  If another individual doesn’t suffer with auras it doesn’t mean they can’t have chronic migraines just because you do.

Symptoms which manifest differently to yours do not automatically equal lack of the same condition. This touches on a truth even deeper still – just because you can’t see or understand it doesn’t mean it’s wrong.

Furthermore, to quote Albinwonderland’s video: “Even if you own every Avengers comic that has ever been made, you still don’t own the Avengers.”

If you have any or all of the symptoms associated with a condition, you do not own that condition. You do not get to decide who has it and who doesn’t based on your own narrow experience. You do not get to say who you “allow” respect and validation for their contribution based purely on your own.

Every voice is valid and necessary. EVERY. SINGLE. ONE. When dealing with illnesses which lack a cure, a clear pathology and any sort of rhyme or reason at all, medical science needs all the information it can get. It needs the experiences of patients across the entire spectrum of symptoms, manifestations and quirks. Somewhere in a time to come I believe that someone will experience something and by chance they will tell the right person about it, and it will provide the final clue which completes the jigsaw.

Do you want to be the person who ignorantly dissuaded them from speaking up because you didn’t believe they fit into the “right” category? 

It’s an inescapable and tragic fact that when we play these sorts of comparison games, we all lose.

I shall summarise with an idea sprung from a proposed telegram of a certain Captain E. Blackadder for you all to consider.

Dear all. Stop. Please please please. Stop.

(Pretty much the expression I've been wearing whilst writing this.)

Wishing you all many spoons xxx

Petunia (AKA Why I talk about my illness as if she's a person)

The title says it all. I had a message asking the question of why my illness has a name as if she’s a person. Aside from certain aspersions cast about how sane I am (who knew sense of humour was a way to measure sanity?) the question didn't surprise me – I thought somebody would eventually ask who the hell I was talking about.

Petunia started as a joke about eighteen months ago in the time of my having hit the IBS Wall and venting my frustration with the same. I described the way my digestive system behaved as like having a stroppy teenager living in there who’s perpetually feeling like nobody understands her and hates her parents – incidentally, exactly the kind of teenager I never was. My friend suggested the teenager should have a name, and settled on Petunia because it’s a vile name (given to some truly not vile people I am sure) and it had some real connotations of first-world-problem sort of complaints.

Oh you don’t like me eating anything at all despite it being a completely necessary function? Poor little lamb, my heart positively bleeds.

As is often the case with good jokes (and bad ones), it stuck.

Originally it was just something which made me (and others) laugh and anything that can do so is helpful, because if I’m completely honest there isn’t much to laugh about with the cold reality of the fact your body is attacking itself for no real reason.

However, whilst it became force of habit to refer to my conditions with the name it also made it something separate from me. There was the person I’d always been, and then there was the interloper I grudgingly shared space with – and when you’re pretty small like me there’s not a lot of space and so consequently there is a lot of grumbling.

She’s also a wonderful release for the part of my personality I keep very much in check the vast majority of the time. I don’t like to upset people, and so I very rarely call anyone names or make unkind comments – I’m human, so I have done so and will again – but all the same I try not to, and if one does spring to the tip of my tongue I’ll always attempt to think about why I think that way. Self examination is a cruel mistress and I can understand why so many people avoid it, but I can’t. The downside of this is that a certain amount of pent up frustration, whether it be with people or anything else  just never quite gets free.

Enter my unwanted lodger – now I have every reason in the world to call her names and absolutely nobody to answer to for doing so. She deserves it.

(A petunia - suitably coloured for Fibro!)

There’s a danger with long term and incurable ill health that you start to attack yourself in your frustration, and view yourself and your body in an entirely negative light because of its sudden “betrayal”. I’m not for an instant going to invalidate those feelings – I understand them. There is something which feels horribly treasonous about a body which worked well for twenty one years suddenly throwing in the towel and deciding it can’t be bothered to do so any more.

However, it’s a potentially harmful cycle to fall into. All that negativity leads to stress and anger, neither of which are conducive to you feeling better. They also tend to contribute towards flare ups of a lot of conditions.

Something to remember – a lot of the symptoms common across a lot of chronic conditions are evidence not of the problem itself, but of your body fighting the problem. However low you feel the human body is a machine designed to strive to repair itself. If your body is doing the best it can, it’s counter productive to flood it with negativity which can be avoided.

I’m not attacking me though. Petunia’s not me – she’s an unwanted roommate who without death-defying leaps of progress in medical thinking will be sharing my space for good. Most of the time however I rub along well enough with her presence – there are of course days when I’d like to have her murdered in particularly innovative fashion, but they’re few and far between. I’m just not an angry person by nature, something I appreciate much more since falling ill than I ever did before. 

I will point out that I’m well aware that this is a personification I’ve made and that I don’t actually think there’s another person floating about. I’m not insane – just a little whimsical and off the wall at times, and armed with a particularly sarcastic and dry sense of humour.

This whimsy of mine comes back to a point I’ve made often on TRB; it’s all a matter of individual choice. I don’t have to justify to you why I choose to combat things in this way, and you don’t have to justify to me if you think I’m completely barking for doing so and your own methods are as far away from mine as can be. Nobody has to justify anything, because the only thing this is truly about is making yourself feel as comfortable as possible with a drastically uncomfortable unasked for situation.

Now if you all don’t mind I must dash, half of Hobbiton is expected for dinner….   

(Image from worldwanderingkiwi.com)

I highly doubt I’m the only person who has discovered a quirky coping mechanism, please feel free to share yours in the comments section below as I’d love to hear them.

Wishing you all many spoons xxx

Shut Up and Dance

(Aerosmith – well why not, I seem to spend enough post titles working through my music collection as it is. Image from wemustobey.wordpress.com) 

For the past few months I've been searching about for another form of exercise I can take up. I always hoped to return to pole dancing for example, but I particularly wanted something much more cardio based – Pilates is wonderful for flexibility and core strength, but it’s not the sort of exercise that lends itself to raising the heart rate.

The pole dancing scenario is looking unlikely – the most promising centre holds a class too late in the week. It’s becoming apparent since I’ve returned to full time work that I have absolutely no hope of doing anything highly physical beyond about midway through Wednesday – I’m simply far too tired and could well cause the first instance of falling flat on your face off the pole because you’ve gone to sleep.

The other two centres I found are problematic too – one books on a monthly basis to guarantee space at the weekly class of your choice and that’s no good for me with my unreliable health, and the final option whilst holding classes earlier in the week sells it all wrong for the way I think about it.

To give some background, SwanseaUniversity has recently banned its pole dancing society because of “inextricable links to the idea of strip clubs and objectification”. So once again a narrow-minded few spoil something for the majority. Pole dancing is often illegitimised as a form of exercise because of attitudes like the one quoted above – but exercise is entirely what it is. It requires strength and skill to accomplish well and provides a challenging whole body workout which builds muscle tone, flexibility and fitness.

The objectification point is rendered utterly ridiculous when you consider that the vast majority of classes do not allow spectators – so who’s doing the objectifying exactly? The third centre sells the sport via the website as all about ”looking sexy”. Whilst I wouldn’t wish to belittle those who choose to participate for this fact – each to their own, after all – given my thoughts about the way pole dancing is portrayed I don’t feel I can really put my money into an enterprise which is for better or worse going along with the potentially damaging stereotype.

I then started to look around into other dance classes in the area and mostly came up against the same too late in the week issue. The couple which didn’t fall into that category are either a pain to get to because of lack of parking facilities (dear old historic Jorvik hasn’t really accepted the car yet) or they’re a long walk away.

I like a walk as much as the next person, but it brings me neatly round to the main point of this post. Walking to an exercise class of any kind involves going out in the cold.

Yes I know, it’s nearly winter and generally speaking cold happens in winter. What exactly was I expecting?

(The only Cold Winter Night which is acceptable to me any more!
Image from wikipedia.org)

The problem is that no matter how well I wrap up if I go out in the cold, I get cold. Cold equals pain, soreness and overwhelming tiredness. No matter what good the physical exercise of the class would do, it would on balance probably be undone by the getting there and back.

Back to exercise DVDs I go.

It struck me on coming to this conclusion that I had been subconsciously avoiding this pretty inevitable end. Why though? I already use one (or the basis of it) regularly, so what harm would using another do?

I find there’s something of an assumption in the realms of health and fitness that exercising in your own home is cheating and showing lack of committment. You’re not going to a gym or a fitness class, you’re not going out running in all weathers, you’re not using a personal trainer so that means you’re not trying.

Essentially, do it one way or you’re doing it wrong.

Anybody else getting a sensation of déjà vu from "I'm not like you and I don't wanna be..."?

What I realised was I’d basically been telling myself this for a long time. Sure, I could carry on doing Pilates at home, but if I was going to do something else then a rather insidious little voice kept repeating “Stop being lazy, go to a class, meet people, be sociable!”

I know. I have Fibromyalgia, work full time and walk there and back each day, do a workout three times a week and yet I was still telling myself I was being lazy. When you put that next to the poor souls afflicted with FM to the point they can’t always make it out of bed, I look and feel a prize idiot. As for the sociable point – my lack of any sort of grace and particular skills in the clumsy department don’t lend to me being particularly comfortable with the idea.

In truth I don’t think there is a “right” way with exercise, except the way that’s right for you and your circumstances. It’s the same with diet – we all know some things are healthier than others and that other things are bad for us, but in the realm of chronic ill health where you have a myriad of diet restrictions, energy deficiencies, overwhelming fatigue and in some cases excruciating pain, these clear lines become much hazier and more difficult to see.

For me, it’s much wiser to stay inside and do whatever exercise I can there, because that way I don’t have to go out and get cold and I can turn the central heating up to whatever hilariously high level I like whilst I do so. 

After looking around and much reading of various reviews, I decided on the Strictly Dance workouts.

(Strictly Come Dancing minus all the clichés, made-up stories and excruciating attempts to be funny… This has merit!

Image from www.parentingwithouttears.com)

They’re all reviewed as being fast paced and difficult when you start out. My other half has just bought himself a tablet and is making full use of Instagram, so I can just about promise with certainty that when I inevitably knock myself out and end up in a heap on the floor there’ll be photographic evidence.

If I’m feeling generous, I may even share it with you all.

Wishing you all many spoons xxx

Adventures in Temperature

I've gained a new symptom.

I think so at least, either new or a furthering of an existing one. Usually my problems with temperature rest in the colder and damper part of the year where I struggle to get warm and end up waddling around in multiple layers looking like a very small Eskimo. It does however mean I get to indulge my love of knitwear, and for that you will never hear me complain! I most recently bought a really thick over-sized purple creation and this sort of thing reliably induces “child at Christmas” mode.

(Over-sized knitwear makes me happy. And a little brave.)

However, the last couple of months my ability to regulate my temperature at either end of the spectrum seems to have vacated the premises.

I mentioned in my post covering exercise that I love to follow it up with a long soak in a hot bath. After my years with a back injury I got used to having the water as hot as I could stand – just shy of scorching – and have continued with this. Recently though a very hot bath has caused my core temperature to rocket upwards to the point of being faint and pouring with sweat. Hardly the result you want from a bath.

Please feel free to leave me a comment below if this is something you encounter, as it’s completely new to me. It makes a sort of sense that if cold temperatures cause problems then hot ones will too, although I survived our unusually hot summer without trouble at all. Possibly it’s the sudden change in temperature provoked by so much as stepping into a bath which causes the problem.

In light of this I’ve also found my temperature is jumping about a bit during the day regardless of stimuli. Layers are fast becoming not only an option but a necessity. The temperature of the office I’m working in certainly doesn’t change, but my temperature just won’t settle.

Having recently been burying myself in Unfinished Tales and The Silmarillion, it’s almost as if Petunia, ever one for extremes, has absorbed the sprawling vistas of Middle Earth and decided “The cold of Helcaraxë or the fires of Mount Doom? Pick one.”

("Fingolfin Leads the Host Across the Helcaraxë" by Ted Nasmith)

Cheers, madam. You missed all the nice gentle places like Rivendell and Doriath then?

This was particularly bothersome last week, it being the time of the month when dysmenorrhea leaves me pretty much gritting my teeth and trying not to scream for a week. Usually I’d grab my wheat bag or hot water bottle and a blanket and just settle myself down for a bit until things calmed down - except that didn't work because I couldn’t stop fidgeting about as a result of my indecisive temperature. 

There are days when I really do wish all these conflicting symptoms would just kiss and make up, or in the very least conduct their squabble in such a way that I don’t have to deal with it!

Thus far I’m resorting to wearing layers most of the time so I have some leeway and having cooler baths, although it seems to depend on the day as to where the line of “too hot” lies. What was fine one day won’t necessarily be so the next.

Just to make baths even more interesting, Misty has recently taken to standing next to the bath with her front paws on the side and looking as if she’s considering trying to leap over the bath and onto the windowsill.

She’s tried that before. It didn't go well, and I was amused with the resulting sogginess even if she wasn't.

Uncomfortable I may be, but at least I’m uncomfortable with the strong possibility of entertainment!


Does anyone else find they suffer at both extremes of temperature? Have you found any ways to make this a little easier? Feel free to comment below.

Wishing you all many spoons xxx

Crouching Tiger, Hidden Citrus

I did it again – fell for the old chestnut of “apple and mango aren’t citrus fruits, so this soft drink will be fine!” and casually forgetting the metric tonne of citric acid in there as a flavour enhancer.

I believe I mentioned during the 30 Day Chronic Illness Challenge the vindictive little person who lives behind my kidneys wielding some sort of mighty war hammer. It’s called Aegis-fang, and no I don’t have a good reason for that.

Well, except that R. A. Salvatore’s The Spine of the World annoyed me immensely and so do the person and the hammer. 

(Aegis-fang. On paper there's no reason at all I shouldn't get on very well with R. A. Salvatore's books - except the actual writing. Image from forgottenrealms.wikia.com)

This is what normal people would call Interstitial Cystitis, but that’s a mouthful in conversation.

Well, unsurprisingly after this dose of unexpected citric acid said little person (and Aegis-fang) were both wide awake and rather busy, and I spent most of today wincing and trying to find once more the mythical balance between enough water to try and cleanse the system and too much which just exacerbates the already every-fifteen-minute-trip-to-the-ladies situation.

The thing is, avoiding citric acid isn't as simple as you might think. Also, you may find you are able to tolerate some sources and not others in the absence of any rhyme or reason as to why this is so. For a personal example, on the soft drink front as long as I only have one in a given day I can get away with a J2O - even orange and passion fruit flavour, which seems illogical – however the apple and mango drink (neither of which are citrus fruits) set me off within a couple of hours.

As an aside, it is worth noting that ALL fruits naturally contain citric acid. Citrus fruits naturally contain higher levels (the clue is in the name….) and so do exotic fruits. All vegetables contain citric acid too, although usually less than fruit with the notable exceptions of tomatoes and potatoes (personally though, I’ll fight tooth and nail before I give up mashed potato.)

It’s often in things you wouldn't expect too, as citric acid and citrate are commonly used as flavour enhancers and pH balancers.  

Here’s a list of some foods you might not suspect of containing citric acid:

Milk and dairy

Milk naturally contains citric acid, but a lot of dairy products add in extra on top. Surprisingly, a lot of cheeses are manufactured using citric acid too.  Many butter and margarine products are vegetable based and may contain soy. Yep, soy beans contain citric acid too. Which means….

Dairy alternatives

... Are also something to be a little careful with. Soy is personally above my tolerance level, but it’s worth trialing rice and almond based products rather than assuming they’ll be OK if soy isn't  Many of those contain citric acid too.

Grains

In their natural form, all grains except corn are citric acid free. That doesn't mean grain products such as bread and pasta necessarily are though. A lot of bread and pastry products also contain soy traces. Rice and rice based products tend to be safest in this regard, and when looking for soy-free grains organic ranges are a good place to start. 

Soups

The best approach here is to read the list of ingredients and make a choice from there, although if it's a tomato based flavour you are probably best steering clear. Most soups however contain either vegetable derivatives or products from the groups above. 

Jams and spreads

All fruit jams contain citric acid from the fruit, however further citric acid is often added as an additional preservative. Peanut butter contains citric acid from the peanuts, and a lot of other spreads will contain soy traces. This is another area best judged on the ingredients list.

(Citric acid, *shakes fist*. Image from vinmetrica.com) 

Whilst there are plenty of things that are sensible to cut out for IC patients straight away (citrus fruits, alcohol and tannin amongst others) there are plenty of things that are worth a trial and error approach until you discover your own tolerance level and the peculiar quirks thereof, as there’ll probably be a few.

A good place to start is the IC Network’s Food list, which splits things into categories of best avoided, worth trying and usually IC tolerable.You will probably find some individual differences but the list at least saves a good deal of research for the completely unfamiliar.

Adventuring in the realms of Interstitial Cystitis can be a perilous business, but there are people who have been there, done that and reached Level 80, and plenty more who are still constantly learning through trial and error just the same way you are. The elusive final boss of a cure might remain hidden, but while that remains so it never hurts to stick your head above water and ask questions. I'm happy to answer anything I can here for example, and sites like the IC Network are full of people old and young, newly diagnosed and long standing veterans. 

Between the whole lot of us, somewhere we may just have the answer.


Wishing you all many spoons xxx