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

One does not simply walk into Mordor

I thought it was time for something a little more fun after the recent seriousness.

The temperature is definitely dropping here now and it's been very damp. As such my hands are pretty bad and I'm struggling to wear the ring Alex gave me for our second Christmas together. Russian Diopside in platinum-bonded silver; not only is it beautiful but I'm very attached to it for sentimental reasons too.

In response to said difficulties, I did this. 

Let it never be said that I am a woman easily defeated! 

The most unkindest cut of all

Anyone involved in any of the chronic illness communities on the internet will I’m sure have seen the controversy surrounding the 60 Minute segment of CBS news which aired on 6^th October 2013 in America. The topic was disability. 

Commenting on the severely overstretched disability benefit system in the country, Senator Tom Coburn (a qualified physician) commented that twenty five percent of the files he reviewed at random should never have been granted disability payments, and another twenty percent were “highly questionable”.

Comments were passed on the rising prevalence of disability lawyers, with eighty percent of claimers now having legal representation compared to the twenty percent represented in 1971.

Lawyers Jessica White and Jenna Flizsar were then interviewed about the new onrush of cases flooding the Courts, and the sticking point for many ill viewers came when one of them flippantly declared that many of the cases were for conditions with “subjective symptoms like backache, depression and fibromyalgia.”

Let’s look at that for a second:

Subjective: based on or influenced by personal feelings, tastes and opinions.

So, what they actually came perilously close to saying is that the symptoms are all in sufferers heads based on their “personal feelings”.

(Food for thought. Image from izquotes.com)

Well gosh; we spoonies have certainly never heard that one before. Oh, wait….

Jenna Flizsar (notably not a physician or doctor of any kind) then went on to comment that there is “really no diagnostic testing for it [fibromyalgia]”. The correspondent Steve Kroft stated that it was therefore “hard to deny you’ve got it” and she replied “Correct”.

I’ll start very slowly shall I, for the benefit of their ignorance?

If you bothered to do any research at all - and the fact that you’re a practicing lawyer in the field and you clearly haven’t done should not fill your clients with any confidence in your professional competency – you would find that there is a very real diagnostic for Fibromyalgia. There is no one specific test, granted, but since when has lack of that meant that nothing is wrong?

Diagnostic criteria were set down by the American College of Rheumatology in 1990, introducing the inclusion of pain in all four quadrants of the body (both sides, above and below the waist) lasting for longer than three months combined with the presence of at least eleven of eighteen “tender points” – specific points on the body which cause pain when gentle pressure is applied. Diagnosis of fibromyalgia is often differential – if specific tests have ruled out conditions it can be considered to mimic (most notably arthritis and lupus) then these criteria are to be applied.

So not only are you incorrect, you’re a staggering twenty three years behind the times.

It’s not only recognised in America either. The International Classification of Diseases (ICD-10) compiled by the World Health Organisation firmly classifies Fibromyalgia as a diagnosable disease under the category “Disease of the musculoskeletal system and connective tissue” and the European League Against Rheumatism recognises it as a neurobiological disorder. I could go on, but I won’t.

What angers me most is that Fibromyalgia is estimated to affect 1 in 20 people worldwide. That’s a heck of a lot of people (roughly 0.35 billion, in fact) to be casually dismissed in a high profile manner as either conjuring their problems in their head or indeed using these “conjurations” to flout the system.

Comments about backache really make me despair as well. Not only did I suffer with it myself for years after a particularly nasty fall from a horse (the horse fell and I was pretty lucky not to end up underneath her), but I’ve watched my Dad battle with it on and off for most of my life. When I was a little girl he had a trapped nerve which took nearly two years of physical therapy to release, and then more recently suffered with locked muscles around an undetected joint injury. He walked bent over to one side for nearly eighteen months and sees an osteopath to this day. Both times he really should have stopped working but as a self employed bricklayer couldn’t afford to, and besides which he’s far too stubborn for his own good (I simply can’t imagine where I get it from). My Mum suffers with trapped nerves intermittently with accompanying sciatica too, but she never stops going to work either. My point isn't to criticise those who do cease work because of back injuries - what I wanted to illustrate was that in both cases they were advised that they *should* do so.

(Not fun, and yet another example of something which can't be seen being dismissed out of hand. Image from jhenteopengco.blogspot.com)

Not all people with backache are lazy or making it up and it’s highly insulting to assume so. 

Dismissal like this is why so many awareness blogs, websites and communities exist. I’m newly a member of the Fibro Bloggers Directory and there are 83 of us in just that one list. Over on FibroModem’s FCK Directory (of which I’m also a new and excited member!) there are even more. That’s just ONE condition.

Googling the term “chronic illness blogs” yields over two million results. Not all of those will be blogs, but a lot of them will be.

We can’t all be wrong.

Putting the righteous anger back in her box and wishing you all many spoons xxx

A silence of three parts

(Consider the title a hint that if you’re a fantasy fan you should probably give Patrick Rothfuss’ The Kingkiller Chronicles a go. Image from www.clandestinecritic.co.uk)

Regular readers will probably be aware by now that I’m not overly shy in giving my opinions on things, and that I do try to approach a subject reasonably and consider all the angles I can before writing it up. 

However, I’m sure we all have things which we struggle to meet with reason. One of mine is the abuse of the idea of free speech. 

To give some background, part of my job is transcribing detailed attendances and conversations, and working for a law firm means attention to detail and accuracy are paramount. However it also means I occasionally have to type something quite unpleasant.

Put simply I was typing up something fairly abusive and when challenged the individual turned round and said “I can say what I want, it’s called free speech!”

There seems to be an assumption that freedom of speech should somehow equal freedom from consequence. By your own logic if you have the freedom to say whatever you like, someone listening equally has the freedom to call you out on what you’ve said. To me it’s a part of being an adult that you recognise the fact that just because you can say it doesn't mean you should. 

In the sphere of illness, nowhere is this more prominent in my mind than the area of mental illness and in particular the subject of depression. 

Depression is not something I have personal experience of, but some people close to me have suffered or still suffer from it. I’m not going to sit here with a pretense of understanding the condition itself – what I wanted to do is comment on the fact the phenomenon above seems to be so much more prevalent in this area.

The little I have learned is that each person’s experience will be as individual as they are, and that there is no right answer that can neatly box everybody up. Similarly to most of the illnesses I talk about it can range from the mild to the soul-destroying, it’s not always easy to pinpoint a catalyst and it comes in many different forms and manifestations.

So why is it that everybody and their aunt and their dog has an opinion about depression?

Better yet, they all appear to feel that they have a right to express their opinion to sufferers without thinking about how possibly unhelpful it may be. Showing off their supposed knowledge and “informed” (make of the quotation marks what you will) opinions seems to be vastly more important than anything the sufferer might think or feel.

(The redoubtable Stephen Fry. Like him or loathe him, he's one of the foremost voices in combating the ignorance surrounding depression and those who suffer from it. Image from wallblog.co.uk) 

If the subject comes up I can guarantee you will see this happening. I've actually challenged people before and asked whether they have experience of depression – when they say no, most of the time its revealed that they've picked up their erroneous views from others who have no understanding and have taken the view as gospel without further thought (because actually evaluating it would be too much effort, right?), or they've done a quick search round the internet and cobbled together what they've found there.

Well Google isn't a doctor and if you genuinely think that a search engine will tell you enough to have an informed view of such a nuanced and variable condition then you are a colossal fool.

It may be outside my sphere of experience, but I still get irritated when I see people mouthing useless platitudes like “Just think positive!”, or “Just get some fresh air!” as if they’re talking to someone who is merely lazy (and apparently stupid).

I’m not suggesting that being outside in the fresh air and sunlight or taking exercise aren't sensible ideas, because that would be silly. However to tell that to someone with depression as though it is something they can just snap their fingers and decide is hugely ignorant and completely divorced from any compassion for their experiences.

And “think positive”? If it was as easy as that then depression and just about every other illness simply wouldn't exist, because everybody could just “think themselves better”. Subscribers to the method of auto-suggestion – training the brain into different thinking patterns by associating the old ones with something negative – are some of the worst I've seen for this approach.

It’s something new and shiny that works for their life (usually remarkable on the fact that depression is not involved) and they then seem to think that anything from a nail biting habit to suicidal thoughts can be fixed by something as simple as wearing a rubber band on your wrist and snapping it when you think anything negative.

Disappointingly I didn't make that example up. I've actually seen someone suggest that to a depressed individual. I've talked about this “what works for one must work for everybody” mentality before on TRB and it never ceases to amaze me that people are actually that blasé about their fellow human beings.

If it’s not telling people how to fix themselves then it’s dismissing the side effects of antidepressants (which they've never taken) as myth and invalidating the experiences of those who take them. 

Just a little piece of information: I take a drug called Amitriptyline for my IC and Fibromyalgia. In higher doses Amitriptyline is a tri-cyclic antidepressant. As with all medication, there’s an information leaflet in each box of tablets which explains the ingredients, anything which shouldn't be taken alongside it and also the list of possible side effects in order of how commonly they occur. 

The list is over two sides of the leaflet and it does include extreme mood issues and an array of cognitive difficulties – the things these knowledgeable folk dismiss as mere myth. Just to poke further holes in egos, it’s also worth noting that said list is part of the reason Amitriptyline and other tri-cyclic drugs are being phased out as front line depression treatments and being reserved for when other less problematic medications have proven unhelpful.

In common with other chronic illness sufferers, I've known several people who don’t like to mention they have or have had depression. They deliberately keep things vague to deflect the ignorant suggestions and worst of all the stigma that it’s “not really an illness”.

To bring this full circle back to my original point about free speech, I mentioned further up that it’s a part of being an adult to distinguish between things that you can say and things that you should.

Something even more important and even simpler yet: it’s about being decent as well as being right.