"Nothing but the rain"

Unless you've been living in Gollum's Cave for the last few weeks, I assume you will have come across the news that Tess Munster, creator of #effyourbeautystandards has been given a modelling contract. As with anything else on the internet, nothing out of the ordinary can happen without extremes of opinion flying out of the woodwork faster than you can utter "I didn't see that coming".

Tess is 5'4" and a dress size 22 - as such she's far from the traditional size and shape found in the fashion industry. Whilst plenty of people have celebrated this as a victory over the stranglehold of the incredibly narrow vision of beauty perpetuated in the media, plenty more have waved their pitchforks in impotent rage and shouted into the void about what a terrible thing this is.

(Image from http://tessmunster.com/effyourbeautystandards.html)

Various arguments are being thrown about as to why that is. "The fashion industry shouldn't promote poor health" is the first. No, strictly speaking, it shouldn't and it has a responsibility for the media and imagery it produces. However, given that for years we have been discussing the trend of models who are underweight or suffer from eating disorders, this is hardly a new idea. We should also be considering the fact that the primary thing being promoted by the fashion industry is the fashion industry, because it needs to remain relevant on a massive scale.

Second among them is the typical "Oh my God, how is that person a model?!" I'm not even going to dignify that. If you're one of those people, take a fanned long look at yourself and consider your choices.

The one that particularly interested me in terms of this post though is more inextricably tied up with what #effyourbeautystandards is all about. I've seen many variations on the theme of "People that shape should not be comfortable with themselves."

To which I ask, who the hell do you think you are?

There is a difference between being comfortable with yourself and "promoting obesity" or however we wish to phrase it. How comfortable another person is with themselves has nothing to do with anyone else at all - it just simply isn't any of your business.

Why is it that when, just possibly, a small baby step has been made towards a wider representation of shapes and sizes in fashion (which is surely to the good of all), that people are so put out?

I suspect I can answer that. It's because it's something different.

There are a lot of people who don't like anything outside of the norm. It challenges the status quo, and that makes them uncomfortable. Things they don't understand frighten them.

Because they can't understand why a person at a particular end of the weight spectrum would feel happy and secure in their size, they try to impose their view. Anyone outside of the norm has " no right" to feel the comfort and security associated with that norm.

Something else to consider - there appears to be a (completely misplaced) sense that anyone outside the norm is immediately open to public consumption. Everyone else "owns" the right to have an opinion on them and to express it to them regardless of any hurt caused. In revealing I'm a fibromyalgia patient I'm frequently bombarded with everyone and their aunt's opinion on my "attitude" and various things I "should" be doing in order to feel better (because everyone's a doctor). In the same way, it appears anyone carrying extra weight is subject to the fact everyone feels they have the right to tell them what they should be doing with their own body.

Tess Munster is indeed overweight. However, it's her body, and I for one am behind everyone feeling as good as possible about themselves. I'm lucky in many ways that as a petite slim woman I don't have to try very hard to seek representation of someone my size and shape. However, I've still suffered through body hangups and feelings of inadequacy. Having done so, I would not wish them on anyone. The idea then that those outside of the average should be forbidden from feeling good is nothing short of disgusting.

(Even early 90's Disney got their head around the fact people are rubbish at dealing with "different".

Image from quotesandmovies.com)

The same logic can be applied to many things. To take the stereotype of "lazy" chronic illness patients, this sort of thinking would dictate these patients have " no right" to fulfilment and happiness because they are outside someone's box of understanding. They are yet again outside of the "norm".

I quoted Steven Erikson's thought on lifestyle fascists in this post. Humorous as it is, there's a serious point there. When you begin to dictate the parameters and ostracise those outside of them in terms of size, shape and weight, a lifestyle fascist is exactly what you're  becoming.

To further the alternative example of patients with chronic illnesses, to the narrow minded, anyone not out of the house in an average nine-to-five job is "lazy", so patients who are forced to remain at home much of the time are definitely squarely in their firing line. However, they can be doing plenty within their limits to help themsleves and to hopefully improve their situation - negative and ill-informed attitudes do not help. In the same way that attacking Miss Munster stands in the way of the very movement she has thrown herself into supporting, so attacking "lazy" patients can hamper their own efforts to effect change in their lives.

Also, here's an interesting idea to stick in your pipe until you choke - not everyone "can" get better. Not everything is curable. Do you really think you imposing your vicious inability to think outside the box is going to do anything except damage the person you've set your sights on?

But wait, everyone and everything should match your opinion, right? Nothing else is acceptable in your hopelessly narrow existence, is it?

And very neatly, we're back to those people who claim people the size of Miss Munster "have no right to be comfortable with themselves".

You do not get to dictate who can and cannot feel good about themselves, and neither does anybody else. You have no right to take that away from another person.

For me, I tip my hat to Tess Munster. If having just one single representation of themselves makes a group of people who usually cannot see themselves in the fashion industry feel better, then I refuse to accept that is a bad thing. It could well be the first step on the road to all shapes and sizes finding a space in fashion media.

Everyone has the right to self worth and to make peace with themselves - whether they match the ideals of what you wish to do with your own body or not.

If you do not accept that, I suggest you should have some long and hard self-examination ahead of you.


I'd love to hear other people's thoughts on this - even though I'm not in the group this is most relevant to, I still think the abuse and narrow-mindedness says a lot of damning things about people, and that needs discussion.

Wishing you all many spoons xxx

Thin = Healthy

Oh please.

I don't usually consider myself a bad-tempered person. I'm usually pretty reasonable and generally I'm very level and cheerful. Occasionally however like everyone I will see red and then woe betide whatever the butt of my disapproval is. One such example of when I cross the boundary into an out of character temperament is when faced with an assumption that has been cropping up rather a lot lately in all sorts of discussions about chronic illness - that weight at either end of the spectrum is the sole cause of the problem.

OK, stranger. Let's say that I'm prepared to give your hypothesis even a moment's thought. Show me the medical qualifications with which you feel empowered to make such a sweeping statement. Nothing doing? So would you like to explain to me the relevant experiences of ill people which have led you to your false conclusion? The huge breadth of people you would have needed to meet and discuss this with in detail to have any hope of such a broad statement being remotely accurate?

Silence.

I'll tell you why you're silent. You're one of the ignorant masses who never pause to think beyond whatever Google tells them. You never give any thought to anything beyond the narrow boundaries of what society deems acceptable, and the actions of the mass media which enforce those standards. Bravo, bravo.

My weight has virtually nothing to do with my conditions. Interstitial Cystitis is an inflammation of the bladder lining - please explain to me how my weight whatever it may be could possibly prevent or cause such an affliction? No really, I'm waiting. I'd simply love to hear it. Obviously this is an area of biology and pathology I'm completely oblivious to so go ahead and educate me.

I dare you.

Fibromyalgia affects the joints, muscles and fibrous tissues of the body. Exactly how does my being "thin" stop the aches and stiffness, the sensitivity and weakness? Exactly what could my BMI (a flawed system to be sure) have to do with any of that?

When I first fell ill I lost nearly two stone in weight and I looked awful - there was nothing I could do and I was eating as well as I could with my rebellious digestive system. My explanations never stopped any comments of "You'd feel better if you just ate more" or "There's no point starving yourself to be thin".

(You most certainly are. Image from openmindhypnotherapy.co.uk)

Really? REALLY? Just who in the hell do you think you are?

First things first about me - I'm 5'3" and have a small frame. There's nothing I can do to change those two facts, and they define rather a lot when discussing size. I'm reasonably slim, but I work at it. The days of my being able to eat whatever I wanted and metabolise like a racehorse are gone, so I'm well behaved and the amount of exercise I do to keep the Fibromyalgia at bay is an enormous help in this regard.

I'll tell you a secret - I have no idea what I weigh. I don't weigh myself. Aside from if you have a medical reason for monitoring weight, I think it's a bad idea. It just seems too easy for self worth to become wrapped up in the number on the scales.

The heart of the matter is that the number on the scales only shows you one thing - a numerical representation of your relationship with gravity. When last I checked gravity was an infinite resource. Thin people are not wasting their allocation thereof, and bigger people are not *gasp* taking up more of it than they should. I'm fairly sure short of something catastrophic we're not going to run out of gravity.

The weight game is yet another hazard of an illness being "invisible". Weight sadly is visible, and it's all too easy for the ignorant to pin the problem on what they can see. Weight is not simply a matter or how much or how little you eat. I have known people who might eat like the proverbial four-legged herbivore but can't keep weight on because of inflammatory bowel conditions (one example cause), and still others who barely eat anything at all and still balloon in weight as a result of medications they have to take to have any hope of a productive day to day existence. Their weight is the effect of their illness, not the cause.

There is no difference between telling a thin person they should eat more and telling a bigger person to eat less, or exercise more. Either way you are being incredibly rude - whatever anyone else does with their body isn't required to match up with your idea of what to do with yours. In fact, nobody else's body is any of your business. Particularly when in the realm of chronic illness you're also being incredibly ignorant of the myriad of complicating factors which may determine the person's resulting weight - and how dare you presume to judge their eating and exercise habits as a stranger?

More importantly though, why is weight seen to be such a defining characteristic for us? Are "fat" or "skinny" really the most important things we could be as human beings? Are they really the standard by which everything about a person should be judged? Why is it seen as completely fair game to comment and expect no consequence for doing so?

A trick some people never learn is to engage their brain before they open their mouth. So many of us speak in ignorance when we should be quiet and learn, and in situations where we honestly do not have the right to comment.

You often hear this personified as "I'm a straight talker - I say what I think!" as if that's a get out of jail free card for whatever offence could be given by your words. Freedom of speech is not the same as freedom of consequence - and the latter seems to be what people are expecting when they envoke the former.

Happily for those of us less impressed with your behaviour, one day you'll meet someone who talks straight in return and I can guarantee you will not enjoy it in the slightest.

One final thing to remember, and it really sums up all of this post. Not a single one of us has to justify to anyone else the space (however much of it) we occupy in the world, and nor should we ever try to.

(Something to always keep in mind. Image from candidrecovery.wordpress.com)

Has anyone else been the butt of comments regarding their health and weight in this way? What did you do?

Letting the bee out of my bonnet and wishing you all many spoons xxx

Wrecking Ball

We know that come tomorrow

None of this will be here

So hold tight to your anger, hold tight to your anger

And don’t fall to your fear.

Bruce Springsteen – Wrecking Ball

I wrote not so long back about my new fitness regime and how it had begun to help with the various Fibromyalgia symptoms. I’ve been ill for too long to have expected lasting improvement – chronic means chronic, after all – but I would have liked things to have lasted a little longer than they did.

The frustrating thing is just how much better I became. I had more energy than usual and whilst the usual pain symptoms were still present I certainly felt the sense of well being that comes with being generally fitter. Though still ill and having rough days I was significantly more bright-eyed and bushy-tailed for want of a better phrase.

However, for the last couple of months I’ve barely been able to exercise at all. The workout DVDs are gathering a fine layer of dust in the living room and don’t look like moving soon. I have attempted to break the cycle a couple of times, but on both occasions ten minutes into the workout I was overcome with the feeling of needing to be violently sick. This didn’t happen but it would be idiotic to try and push past that sensation.

I’m not completely immobile – I’ve still been getting to work and pottering about in the evenings and at weekends but I miss the sense of structure and purpose. Taking up something like the 30 Day Shred again would be so ridiculous as to be laughable at the present time. I just don’t have the energy and attempting to fight this, as I’ve covered, does not lead to pleasant results.

I first noticed this oncoming phase when we went on holiday to Wiltshire at the end of June. We were blessed with sunny and hot weather but I think this further highlighted the problem – it was the sort of muggy heat that saps energy. Whilst we had a lovely time and went to some really lovely places – we’re both history nerds, and Wiltshire is the sort of old the dinosaurs had already forgotten about - I struggled with energy constantly. In hindsight I managed to do quite a lot considering, but it was never without the feeling of needing to collapse in the shade fairly regularly. Still, it was nice to get away and I’d go back to the area in a heartbeat.

(Not giving a monkey's at Barbury Castle - right up until my knees gave up a couple of hours later anyway.) 

So, the break did not improve things as you would usually expect it would. I’ve then been in the process of changing jobs again due to circumstances beyond my control and I suspect this has piled on the pressure on top of my already depleted resources. It never rains and all that.

So, at the moment I’m walking eight miles a day with a couple of train rides in between to get to work. I probably don’t need to illustrate the fact I’m back on the routine of come home in the evening, eat, sleep and repeat. The walk will have to do as my exercise for the foreseeable future because short of a miracle I will be summoning neither the energy nor the will to do anything further. For now, I give up.

Giving up. What an unpleasant phrase. However, there comes a time when you have to be sensible and recognise the difference between giving up because you can’t be bothered and conceding defeat because it’s the most sensible and healthy thing to do.

I am slowly coming round to the idea that I think my general health and fitness will work in cycles like this. For every phase of relative good fitness and energy levels I’ll have a corresponding low period. It’s undeniably frustrating because it means I can’t build fitness beyond a certain level before I have to let it slide again, but hopefully with perseverance it will creep up a little each time.

I really could moan about this, but on reflection I think the important thing to remember is that I could be without those good phases at all, and plenty of chronic illness patients are. Right now, it’s a bad patch and doesn’t look like letting up any time soon. Maybe Petunia didn’t like Stonehenge and Avebury very much (tasteless swine).

However, I had a phase of a couple of months where I was unusually well preceding this, and they’ve occurred infrequently before. That means with any luck it will reoccur again. I’m hopeful that once the situations of the job and the new house are sorted out I might settle down a little bit, but if I don’t then so be it. Petunia is as Petunia does after all.  

So in terms of my fitness, slow and steady will jolly well have to win the race, and as for those elusive "well" periods, they provide something (however tenuous) that can always be looked forward to. I'll take my small victories gratefully.

What do you do in your corresponding good/bad phases? How do you approach the fact that your health never stays the same?

Wishing you all many spoons xxx

"It's just a fashionable diet"

One of the most common complaints across the board of chronic illnesses is problems with food and digestion. Whether it is specific intolerances or more general bowel issues (diagnosed or not) it is a factor many patients have in common.

Another thing many patients have in common is facing the attitude from others of “It’s just a fad diet”, thereby implying that you are being awkward and difficult for ultimately silly reasons.  This is particularly in the case of problems categorised as intolerances. We all know allergies are deadly and I like to think that nobody would argue with another person who stated they couldn’t eat something because they could quite literally expire if they did so. I’d really like to think that everyone is decent enough to not do that.

This understandably casts "mere" intolerances in a poor light. They’re not deadly and therefore I think some people see this as an excuse to ignore them or at the very least not take them seriously. When taken in direct comparison with an allergy I can see why this is so.

However, let’s talk a little bit about food intolerances. I will warn you now this will not be particularly pretty.

First off it’s worth pointing out that you can have an intolerance to just about anything you ingest, and if it’s a minor ingredient hidden in a lot of foods then you’re going to have a tougher time weeding it out. Two of the most prevalent intolerances you would be likely to come across are to gluten and lactose, a sugar found in dairy products. Usually those are the first two candidates a doctor will tell you to exclude to try and narrow down the source of the problem.  

Symptoms of a food intolerance can include abdominal pain, acid reflux, bloating, constipation and/or diarrhoea, fatigue, headaches, nausea and skin problems amongst others and when acting in co-morbidity with another condition the list of potential problems grows exponentially.  

(Some more possible symptoms. Image from thebroadstreetpractice.com)

This year I’ve discovered that I am intolerant to gluten, and I found this by going gluten free for the better part of four months. Many of my digestive symptoms calmed down and some ceased to exist entirely during this gluten free period.  To give this some context I hadn’t had what you would consider a normal and healthy bowel movement in probably two years. Apologies for this being a little icky, but I think that sometimes in tip-toeing about and prettifying the point you lose the importance therein. Given this is a topic that is already not taken particularly seriously, avoiding the unpleasantness simply won’t do.

So, through exclusion I found that my problems were routed in intolerance to a certain foodstuff, and I set off into the brave new world sans bread.  The difference has been wonderful for me, and I would recommend if you’re going to try exclusion dieting that you need to eliminate the chosen food or drink  for a good few months – it took two months for me to start seeing any benefits and a further month for “normal” to happen.

Now it’s time for me to hold my hands up and admit my guilt. I don’t always behave with this. I don’t always feel up to the potential battle of wills which follows asserting this issue, so sometimes I just keep quiet and eat things that I probably shouldn’t. Other times it’s for a reason far simpler – every now and again a girl needs a slice of toast in her life, and as I don’t have an allergy I’m lucky enough to be able to indulge on occasion.

This obviously doesn’t help on the being taken seriously point, but the thing to remember is that this is my body. I know what’s going with it and I know if my symptoms have been low key enough to allow a bit of gluten-containing food or whether in fact they’ve been disagreeable and so it should be avoided. When last I looked, nobody else held the responsibility of policing my digestive system.

Rather like most of the symptoms of ongoing illnesses it’s something that can be fine one day and then troublesome the next. I understand that cooking around dietary restrictions of any kind makes things more difficult, and I'm always incredibly grateful when people do make this effort and particularly when cooking for many. That being said however I do very much resent the idea of “just being awkward”.  To prove my point, I have but one question:

Why would I deliberately make things awkward for myself?

Consider this: I like bread, pasta and plenty of other gluten containing foods. Gluten free versions of those products are available but they are invariably far more expensive than their ordinary counterparts, and often quite difficult to come by.

(I wasn't hungry before I started putting this post together.... Image from lavenderandlovage.com)

In illustrating this, I worked out recently that if I wanted to cook a completely gluten free meal of lasagne and an accompanying garlic bread, then assuming I went to my usual supermarket for the other ingredients I would need to visit two different additional supermarkets to find the gluten free pasta sheets (Tesco or Waitrose) and the garlic bread (only Asda so far). That’s a lot of messing about for just one meal, but sometimes life calls for lasagne and garlic bread in a way that even the stoutest of hearts cannot ignore.

My approach is that when I know an event is coming up where the insidious presence of gluten is likely to make itself felt then I’ll avoid it completely for a couple of weeks before and probably after to make sure things can get back on track as quickly as possible. I would say that I am currently working on about 90% gluten free the vast majority of the time and this keeps things ticking over quite nicely, and means most of the time my symptoms are mild enough that I can allow myself the occasional treat of a gluten product (who am I kidding with “product”? It’s cake.)

I believe we’re back at the same point I often make in that it’s not for anyone else to decide what is best for you, your body and your condition(s). If it’s something that affects someone’s quality of life then it should be taken seriously, not ignored on the basis of it not being something else. That’s the same logic that leads people to tell chronic illness patients “At least it’s not cancer!”

Next time you are faced with cooking around a dietary restriction (and I’m including the choices of being vegetarian and vegan in this too, as they seem to carry the “awkward” tag just as often) perhaps instead of bemoaning how this affects you, you should take a moment to consider that it isn’t actually about you at all.

To end on a happy note, for all my fellow cake fiends who are reading this and might also need to avoid gluten, I simply must recommend this dark chocolate fudge brownie recipe. I needed to double the oven time from what the recipe suggests but those brownies are simply god-like.

I kid you not, there will be angels composing odes about them as we speak. 

Has anybody else discovered food intolerances? Has this made your symptoms any better?

Wishing you all many spoons xxx

Why Petunia is not allowed an opinion.

This could be my record attempt for my shortest ever post, because in summary I could just say “Because she’s a moron”.

One of the things I’ve noticed over time is a seemingly insidious sense from her that she can adapt – clearly in a previous life she was a Galapagos finch. Whatever I try seems to work for a while, and sometimes quite a long while, but it’s as if one day she wakes up having figured out a way to defeat my new strategy and things on the health front will return to the erratic nonsense that is their norm.

There is only so much anyone can take of this before they start to get pretty fed up. She can’t be reasoned with and she can’t be talked round, and each thing I try she manages to work out how to beat it or simply ignore it. Maybe I just haven’t found the right strategy to attempt yet, but I’m running out of feasible options rather quickly.

The real reason for the bad taste left in my mouth about it all is this though; science and current medical thinking would dictate that these things should be working. There doesn’t seem to be a logical explanation for why they aren’t doing so, or at least not on a long term basis. It’s as if she just ups and decides that she doesn’t have to pay attention.

(Except she's not listening. Image from pandawhale.com)

My latest attempts were going gluten free and adopting a new exercise regime. The switching to a gluten free diet has not been anywhere near as difficult as I was at first expecting. Yet again I have reason to be thankful that my parents (and therefore me when I was growing up) were typically British in their eating habits. Not many things in sauces and a lot of plain but good food. Italian was about as far as we stretched to foreign cuisine when eating out.

Once I’d gotten my head around the mind-boggling array of unexpected items which contain gluten (yoghurts – really?) I actually found the transition to be relatively painless. I’m off bread completely and so not attempting the gluten free alternatives, and only occasionally having pasta for which I don’t mind the alternative at all. I’ve also discovered some lovely supermarket brand gluten free ginger cake slices – unlike most gluten free sweets and cakes they’re not terrifyingly bad for you and they’re just the right size that one is enough to give me a little bit of a treat rush without impacting my otherwise healthy diet very much at all.

Did I mention they’re beyond delicious? I should have, because they are.

Of course the main question at this point is whether this is working. At the moment, after three weeks I can tentatively say yes. There are some definite improvements with bowel symptoms and thereby as a result I have experienced comparatively little bloating and discomfort since making the change. I was expecting it to take much longer for any change to have impact and so for the first week or so of improvement I was understandably suspicious and waiting for the pendulum to swing back.

Thus far, touch wood, it has yet to do so. I still get a certain amount of pain from the same areas as before (upper and lower left quadrants) but the difference is wonderful. By proxy, my diet is probably also cleaner than it has ever been and I’m certainly feeling like I have a bit more energy than I have had in a long time. I no longer have the “food nap” sensation after meals. I still have days where I feel like I’ve woken up with the spoon count already in the negative – negative spoons are a thing, I’ve discovered – but my “normal” level of energy is still noticeably improved.

What about that exercise regime though?

This is the story of when Petunia met Jillian Michaels. They did not part as friends

To begin with, I will just say that I’m not going to go into this write up recommending Jillian Michaels’ workouts to anyone. They’re hard work and very taxing on the body – and I would suggest that would be true for the 100% well let alone those with chronic ill health, so please don’t take my successes with the workout as an automatic green light for you. Most of her workouts are available to watch on Youtube – I really can’t stress enough the need to watch them through before you think about putting them into practice, and if you’re still not sure then you need to speak to your doctor.

There are also parts of the workouts I modify and switch out, purely because (sorry Jillian) she’s absolute murder on the knees in particular. Some of the exercises I watched and knew better than to attempt from the off – another reason I say you must watch them through before you try them. This also helps to ensure you’re picking up correct form, too.  

I would also say that I don’t consider Jillian to be a human being so much as I do a walking and talking embodiment of the “no nonsense” approach. She takes no prisoners at all, and whilst I love the effect the workouts are having on my let-go-a-little-through-winter body, I still expect her to remain a permanent fixture on my hit list.

(This is turning into something of a complex love-hate relationship. Image from copykitty.co.uk)

Most of what I’m doing is the 30 Day Shred DVD. It’s hard. However, it does deliver the results promised. I’m about half way through and I can see visible difference and clothes fit better already, so I look forward to the results at the end of the month. It’s also getting me into the frame of mind of exercising most days which I’d like to try and keep up because it does do good things for my energy levels overall. I’m having at least one day’s swimming a week instead of the DVD and at least one day’s rest – ideally you should have only one but there’s no sense in working beyond my capabilities. My body won’t do six days straight no matter what incentive you give it.

At the moment then, I’ve conquered the wild beast and she lies asleep and tame once more. I don’t know how long this will continue for but I’m determined to keep up the mostly gluten free diet (the odd treat to accommodate eating out with friends and what have you) as even if it doesn’t solve the specific symptoms I was aiming for long term, the renewed energy and general feeling of “better” isn’t something to be sneezed at.

Long may it continue.

Definitely not sneaking off with another ginger cake slice, and wishing you all many spoons xxx

Who will rid me of this turbulent.... something?

If only it were as easy as having Petunia assassinated.

Mind you, if it had been that easy this would have been a rather short-lived blog. Swings and roundabouts as always.

By way of summary, I’ve decided to give in and go back to the doctors. I’ve been resisting this for some time as I really don’t take kindly to the thought of going back down the gastroenterology route once more. I’ve been telling myself I can put up with all the various shenanigans my digestive system likes to engage in, if only I didn’t have to go back and fight my way through all the lowest common denominator rubbish the GP would drag me through before actually listening to me again.

Truth be told though, I can’t. Aside from all the usual things, spending nigh on a month so bloated that my clothes don’t fit properly  and being in pain as a result of the most normal of bodily functions is just that one step too far. Actually, it’s several steps too far but I’m exceedingly stubborn. The fact remains I should probably have done this some time ago.

Nothing in my diet has changed in that time so there’s nothing I can point to in terms of why things have suddenly gotten so much worse again. Especially when you consider that up to the last couple of months I’d been without more than moderate trouble in this area for the best part of a year. I really don’t have even the faintest idea what has happened.

So, never one to sit around and wait for the solution to walk through my door (hurry up, would you?) I’m going back to keeping a diary so hopefully I can bypass some of those initial hurdles with the doctor and give them something to work from.

(Image from mindbodygreen.com)

I’m also going gluten free for at least a month to see what effect if any that has. I don’t expect gluten is the true source of the problem, but if cutting out bread and pasta and the like helps with the bloating (which I suspect it may do) then I think it’s worth a try. Once I’ve had my trial of that, I’ll try going dairy free.

When I referred to lowest common denominator with the GP earlier, this is actually where some of that feeling stems from. When I first started to develop bowel symptoms the first thing I was told was “Try a week without gluten and dairy and come back”.

Er, no. If you’re going to go free of something to test for an intolerance then do it properly. When you consider the fact an ex-colleague of mine (who was a diagnosed celiac) repeated to me that it takes six years for all traces of gluten to leave the system, what exactly do the doctors expect to happen in a week?

I strongly suspect with answers like those they actually just want to delay having to deal with you. Current thinking for those wishing to go down the Paleo diet route is that you need to remove the offending food groups for thirty days to see a difference. So, thirty days of gluten free here I come.

In light of this decision I went gluten free shopping last night after a quick horror-filled dash around our kitchen confirmed that almost everything in the known world has gluten in it. Aside from the obvious, the yoghurts we currently had in (Activia) contain wheat flour which came as a bit of a surprise. I also wasn’t too happy to find gravy was out too. However, I have now discovered Bisto Best (the glass jar variety) are suitable for celiacs, so that’s something of a blessing.

After copious amounts of eye-watering at some of the prices I encountered, I came away with some yoghurts which use tapioca instead of wheat flour (Shape in this case, but there’s a fair few about), gluten free pasta and some gluten free ginger cake slices so I have a go-to if I want a sugar fix, which I suspect I might. I also found some gluten-free self raising flour and a bag of ground almonds – thankfully there’s an easy equivalent gluten-free recipe for the apple and cinnamon cake I make, so the other half’s birthday cake later in the month is saved.

Other than that, basically I’m swapping sandwiches for salads at lunch time and having fruit and a yoghurt for breakfast instead of cereal. Main meals are planned to be mostly meat and veg so if nothing else I’ll be clean eating like a pro for the thirty day period. Here’s to hoping I see some results.

I’ve mentioned food intolerance tests before, but the main reason I have yet to have them done is the expense. A month has not occurred yet where I have £200+ spare to play with. This week however I discovered a company who live here who offer hair testing instead of blood testing, which if I understand the science behind it correctly is better for showing generalised patterns, whereas blood tests are much preferred for emergency or minute-to-minute analysis. 

I’m familiar with hair testing through work (it’s the preferred method to test for drug and alcohol levels) so know a bit more about it, but another large appeal is that it’s much cheaper. Over £120 cheaper than the previous best quote I’d seen in terms of blood testing.

I might just be on to something there!

I’ve also purchased a copy of Jillian Michaels’ 30 Day Shred DVD, since I’ve enjoyed the DVD I have from her series so far. I’ve heard good things in terms of results for 30 Day Shred and some of the appeal lies in the fact that there are three levels of intensity to the workout, so if the limits of the Fibro dictate that I have to stay at level one then that’s fine, but I’ve also got the opportunity to try something a little harder if I feel up to it.

(Could start being highly relevant after this 30 days.... Original X all the Y meme from Hyperbole and a Half)

Whilst I’m not under any illusion I have much in the way of excess weight to lose, it would be nice to feel that whilst I work against  all the extreme bloating and water retention, underneath it I’m getting into good shape. It would be pleasant to think that at some point in the future I’ll be rid of those side effects and maybe get the courage up to show off a little.

As it’s me than the latter is extremely doubtful but stranger things have happened at sea.

Now I’m thinking about it though, probably not very many *wink*.

Have you had any attempts at exclusion diets or experiences of food intolerance? I’d love to hear them and hope to share mine as I go forwards.

Wishing you many spoons

King of Fools

We are never gonna be like you,
We don't follow - King of fools,
You are the blind who lead the blind.
You are the King of Fools.

Edguy - King of Fools

Diet and exercise – the two things most likely to irritate me as suggestions for how to make Petunia behave. Simple, obvious and perpetually ineffective.

The problem for me is two-fold. The assumption that everything that is wrong with a person’s health can be fixed with a mixture of the two is both tiresome and in some ways quite rude – there’s an unspoken assumption there that the person is too stupid to have thought of those things themselves and therefore is wholly responsible for their own problems. That also bolsters uninformed opinions regarding patients “attention seeking” and that they just refuse to attempt to get better and are in fact happy being ill.

Yes, we thoroughly enjoy it, and personally if Petunia were tangible I’d marry her, I love her that much.

(My lollygagging is becoming a real issue. Image from Tumblr, source unknown.)

(If I ever say that to you I suggest you duck, because eventually it’s likely that it’ll be swiftly followed up by something being thrown.)

So, I ask of all the pseudo-experts out there, what should I do when having a clean, healthy diet and doing regular exercise don’t work and in fact causes as many problems as they solve?

I eat pretty plainly in order to try and calm my insides down. Most of the time I aim for a good balance of protein and vegetables and a reduction in carbohydrates in a meal – I don’t cut out altogether, but I do cut down. I don’t drink because of the dual reasons of medication interaction and the fact the Interstitial Cystitis side of Petunia’s personality would no doubt explode if I did. I drink plenty of water (too much at times) and I don’t drink caffeine during the day. I don’t snack much except for fruit and mostly keep sweet things for weekends only. In essence I am pretty damn well behaved on the diet front.

I also exercise as much as I’m able. Due to my recent dip that hasn’t been as much as I’d like but it is slowly coming back and I hope to over time work up to the point where I’m working out three or four times a week again. This doesn’t include general walking about such as walking to work. I’ve just purchased a couple of Jillian Michaels’ more cardio-driven exercise DVDs to give myself a bit of a change and I’m hoping in a few months I’ll be back to being able to take this amount of exercise regularly once more. This will obviously be made easier as we move into Spring and things start to warm up too.

The second problem however is that this has become habit forming. There’s nothing wrong with that in itself, except that I’m a little concerned just how much worse I feel when I need to have an evening off. I’ve spoken about giving myself the evening off as a gift so I don’t feel like I’m just being lazy, and this is mostly effective. However it doesn’t change the fact that I physically feel sluggish and lethargic whenever I’m too tired or sore to exercise, and I don’t have an unrealistic idea that one day I will banish this problem. I have Fibromyalgia – I’m never going to be able to keep the routine all the time.

I wrote a post some time back about what I considered to be the negative and dangerous aspects of the “fitspo” fad – a wealth of articles, memes, diet and exercise plans constantly telling you that if you aren’t following exactly, you’re weak, lazy, fat and an altogether useless sack of flesh.

The thing is just avoiding fitspo related websites doesn’t keep you away from this sort of attitude. It's more than a little disturbing how quickly I’ve started to feel lousy in myself when I can’t complete my exercises as planned.

(Whilst I realise it's not all bad, I am predominantly very anti-fitspo, because as illustrated it can be sodding dangerous. Image from pinterest.com)

There is something very insidious about being at the top of a slippery slope where your self-worth becomes completely tied into your diet and how much exercise you do. Constantly being told it is the way forward (even when you know it isn’t) will wear anyone down eventually, and it’s surprisingly easy to start to question yourself when faced with a relentless onslaught of pseudo-expertise.

Sometimes, it does just feel like far too much effort to keep explaining yourself and once you reach that point you start to wonder if it’s too much effort to explain because you are in fact incorrect. The pseudo-experts start to sound like they possibly make sense.

The slippery slope I just mentioned, do you know what is possibly waiting at the bottom of there? At the point when the apparent army of inherently arrogant “experts” and their unasked for opinions have won their battle with their victim's self worth?

A variety of different mental illnesses, self esteem problems and anxieties which tear people's lives apart.

I repeat myself a lot on this blog in terms of the topic of "think before you speak", but it really can be of vital importance. If even one person takes that thought away from this blog, then I'll feel like I've achieved something. A few would be lovely, and lots would be phenomenal. In a generation of trolling and keyboard warriors where people seem to feel that their opinion is the only important and worthy part of any discusion, it's a lesson that only becomes more necessary. The art of civilised discussion has seemingly long since disappeared into myth for most.

There are very few scenarios where you "have" to say something, so when you've ruled out necessity consider this:

Just because you can say it doesn't mean you should.

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

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

Nobody Expects the Spanish Inquisition!

.... and particularly not over their diet.

("Too inquisitive! Should have been the Spanish Casual Chat!"
"Circle", Eddie Izzard. Image from auntiemomo.com)

As we all know I put a fair bit of time into keeping abreast of things going on in the chronic illness community. Yes dear readers, I was one of those irritating children who always did their homework and even sometimes dared to enjoy doing so. Old habits and all!

Something I’ve seen a terrifying amount of is people (usually incredibly courageous in using the website’s anonymity function) expressing the opinion that chronic ill health only happens as a result of what the person is eating.

That’s it everyone, the mystery is solved! If we all stop eating chocolate, bread and milk we’ll be cured! Sounds legitimate to me, I can’t wait to start feeling bet.....

... Anybody else seeing the problem?

Wait, you mean the rather colossal and looming one that goes something like don’t you think we might have tried that already?

To take this out of the chronic illness sphere for a moment, this touches on something I strongly believe in. Nobody else has the right to comment on what you eat or on the effect that has on your physical shape and health. Your diet is entirely your choice and I firmly believe it is therefore nobody else’s business. I’m sure we’ve all seen the sort of stupid comments which accompany photos on the internet – usually along the lines of “go eat a sandwich” or “who ate all the pies” dependent on how the victim doesn’t fit the incredibly narrow version of normality those commenting possess.

We even have memes backing it up. Hands up if you’ve seen the “Real men like curves, only dogs go for bones” one? The fashion and media industries are constantly piling on the pressure to be thin, the masses cry. Now I'm not saying for a moment that isn't true, but apparently this makes it OK to pour bile and vitriol upon thin people.

(Good old Philosoraptor.)

Can you honestly sit there and justify that one is any better or worse than the other? One body type has been demonised so now the demons are fighting back by inflicting the exact same thing on the body type opposite to their own. And so the dance goes on, and on, and on.

Here’s a novel idea: how about we accept everybody is different, that their diets are different, and leave each other alone?

Bringing this back on track in terms of chronic illness, in doing some research on the role of diet I found lots of references to “Leaky Gut Syndrome.” A more detailed look can be found here but to all intents and purposes LGS is increased permeability of the lining of the intestines, leading to not only toxins escaping into the body, but to malabsorption of essential nutrients which also escape. The theory goes that because a large proportion of the body’s immune system is located in and around the digestive system, this leakage causes inflammation and could be a factor in a lot of autoimmune problems.

Amongst the conditions listed as potentially linked to LGS we find Fibromyalgia, CFS (ME), Irritable Bowel Syndrome, Inflammatory Bowel Disease, Arthritis, Eczema and other conditions which are either lacking a clear pathology or in the least are poorly understood in terms of why they appear.

Despite my opening comments, I’ve never been against the idea that diet (and particular foods more so than others) have an effect on overall health. My problem is with other people passing comment as if coming from a place of superior knowledge, and as much as I hate to pedal negative stereotypes here on TRB it is usually the perfectly healthy who seem to feel the need to do it. 

On a personal note with the question of diet I recently decided to cut bread out of my diet during the week and allow a treat at weekends. In essence I've swopped my usual sandwich lunch for either vegetable batons and houmous or salads. The next step will be to go onto gluten free pasta as opposed to the regular product. I don’t have Coeliac Disease but I am fairly sure gluten is becoming a problem for my bowel nonetheless.

I’m excluding slowly in stages because my gut takes umbrage if I do anything quickly – several extremely painful encounters with this problem have taught me to take the “slowly slowly” approach. I’m going to do this over the course of some months and then see if I’m feeling any different. Eventually I plan to make the same attempt with dairy, and I still fully intend to save up for the food intolerance tests I’ve made mention of previously.

Having a quick read of the list of problem foods on the website for LGS, I was very soon struck with the idea that eating would become very boring indeed were I to keep to it exactly. Speaking for myself, I enjoy my food and I don’t want to lose that enjoyment. I’m willing to make attempts but I won’t go the whole hog and turn eating into a chore.

(A simplified representation of the link between LGS and chronic conditions. Courtesy of leakygutcure.com)

Given the views I’ve expressed over the judging of weight, diet and body type I’m of the opinion that there’s quite enough people with an unhealthy attitude to food – whether it be for themselves, societal pressures or the reactions of the people around them – without me engendering a poor view of my own.

And that decision is nobody else’s damned business.

Have you made any dietary changes? Do you have any comments on Leaky Gut Syndrome or on the opinions of others as to the role of diet in chronic ill health? Please feel free to add your comments below, I’d love to open up some discussion with this topic. 

Wishing you all many spoons xxx