Sunday, 30 June 2013

The Retired Bridgeburner: 30 Day Chronic Illness Challenge

This is something new for me, a challenge to blog for TRB every day for a month rather than just once a week. I also thought this would be a good opportunity for readers to get to know me a little better in somewhat quicker fashion than reading my more essay-like posts.

I'll still write longer posts as usual when ideas come to me, but expect a post a day for the next 30 days and I'll see how constructive I can make them.

Day 1

Introduce yourself. What illnesses do you have? How long have you had them?

I'm Hannah. 23 year old Brit living with my partner in historic Jorvik.

Tea monster, fantasy fanatic and spoony. Arguably spent far too much time slaying dragons.

(Me!)

I have Fibromyalgia with associated Costochondritis and relatively mild Interstitial Cystitis. I also have some sort of undiagnosed bowel issue (I personally believe it's a food intolerance of some kind, and I'm saving up for some lab tests to start the ball rolling to that end.)

It's hard to pin down when they appeared precisely. I started up with bowel problems and general malaise and tiredness just over two years ago, and because we have IBD in the family I spent about a year under a Gastroenterologist who unfortunately (or fortunately, depending on how you wish to look at it) found nothing. After the first six months or so the fatigue worsened and general all over aching and pain began to be an everyday occurrence. Phases of poor memory and concentration started to recur around this time also.

Around a year ago I developed what seemed to be an incredibly virulent and recurring UTI. Five courses of antibiotics later and it refused to vacate the premises. After a long battle I managed to obtain a referral to Urology, who listened to me talk through the chronology and symptoms for five minutes and diagnosed me on the spot.

I firmly believe if it hadn't been for an accidental (and fateful) change in the GP rota at my surgery the Fibormyalgia would be undiagnosed to this day. After listening to me the new GP did some reading about chronic pain conditions and came back to me with the pressure point test. A couple of minutes of me virtually bouncing off the walls later and we had our answer.

At the moment I'm taking Amitriptyline for the Interstitial Cystitis and a somewhat demanding exercise routine has been the only relief for the Fibromyalgia so far.

So there you have it!

Saturday, 29 June 2013

Elementary, my dear Watson*

I'm sure many of you will have seen the article below in the last week or so, as it marks a possible breakthrough in research for Fibromyalgia:

Doctors confirm Fibromyalgia is not imaginary

In all honesty I have some difficulty with the article, as it seems to use the phrases "nerve endings around the blood vessels" and "blood vessel endings" interchangeably when they are clearly not the same thing. Also, whilst it's fantastic to have a proven pathology, there's too much focus on the hands and no clear indication of whether the findings would be consistent around the rest of the body.

Does anybody else suffer particularly with their hands? I have hand issues on and off but they are not and have never been my primary pain source.

Also, being by nature particularly anal about standards of written English, the article's poor grammar flicks automatic "disregard" switches for me.

However despite any misgivings it will be interesting to see where research takes us in the future. The question which came to my mind is that if the finding of these specific nerve endings is going to supersede the four quadrant and pressure point tests in the diagnostic stage, if this pathology is found to not be present where does that leave patients who have been diagnosed with Fibromyalgia using the accepted tests?


(This diagram from phys.org illustrates just some of the variety of symptoms found in Fibromyalgia patients - one of the reasons I find this sudden focus on purely the hands unsettling.)

I have my reservations about this new theory being widely accepted - the following is an article from 2008 which already declared Fibromyalgia was not a figment of imagination:

Fibromyalgia: a real disease

This particular research demonstrated abnormalities in cerebral blood flow to be part of the pathology discovered in Fibromyalgia patients, and also ties neatly to the pre-existing concept of central sensitisation of pain. It bothers me that previous findings seem to be disregarded wholly in the face of newer ones - why can both of them not be true? What makes them mutually exclusive by default, as seems to be suggested?

It's also worth bearing in mind that at any point in time, you can always find counter-balancing negative studies reported, such as the following:

Weather conditions do not affect pain or fatigue in Fibromyalgia

The Dutch researchers aren't dismissing the idea entirely, as the headline would suggest, but in their particular control group they found more evidence against than for the concept of symptom differentiation caused by the weather. I've covered this in my own post Winter is Coming, and I have spoken to plenty of people who react similarly to cold and wet conditions or to high atmospheric pressure.

I can't help but feel deep down that people have gotten carried away with this new hand research, when there is already a body of research present receiving little to no attention. It's far from the only research being carried out in this area, but for whatever reason it has accumulated much more coverage.

I read a statistic recently which suggested ground-breaking research in even basic science can take up to forty years to penetrate into medical practice and become part of accepted treatment. - on that basis I'm sure more will have been discovered by the time this research has had any chance to enter the popular medical conscience.

Whilst it can only be celebrated that we now have a widely-seen proof of Fibormyalgia being real (as if any sufferer ever doubted it for an instant!) I think it's easy to see why the community as a whole remains quite divided in their opinion of the new findings.

On a lighter note I wanted to share this as I'm unsure if everyone will have seen it - Christine Miserandino's Spoon Theory made the BBC News website here in the UK!

Running low on spoons

Well done Christine!

I'd love to hear what others have to say about the new research, or indeed any of the existing work I've posted. Please feel free to leave me a comment or contact me (The Green Moranth tab gives you several options of how to do so.)

Wishing you all many spoons xx

(EDIT: A friend very kindly sent me the full paper for the new research - it isn't ruling out anything, merely suggesting the hands were a source of the particular phenomenon being previously recorded and so chosen for use in this study. Short version: you apparently cannot trust ANY press to report scientific research accurately!)



* Yes, I'm well aware Holmes never said it, but who am I to fly in the face of tradition?

Thursday, 20 June 2013

So Say We All

The aforementioned kitten post is delayed once more, friends!

I’m sure plenty of readers will have already seen this image of the note left on a young lady’s windscreen by a passer-by after she parked (rightly) in a handicapped space.

(The note left on Emelie Crecco's windscreen which she bravely shared.)

I’d dearly love to say it’s the first instance of such ignorance I’ve seen, but that would be far from the truth.
The situation doesn’t directly apply to me – I’m not ill enough to be considered disabled – but I know people who are and they sprang immediately to mind upon seeing this.
Now, had the scenario been a traffic warden stopping the person and asking to see their blue badge (or whatever equivalent applies) I can understand – they’re doing their job. For a random passer-by to make such a judgement and then have the gall to act upon it is nothing short of rude.
To illustrate the point of invisible illness and disability somewhat further (although it never ceases to astound me that the concept of “invisible” needs explaining), the following is a list from DisabledWorld.com of SOME of the disabilities in existence considered to be invisible – they add their own caveat that this is far from an exhaustive list:
·         Allergies
·         Arachnoiditis
·         Asthma
·         Autism
·         Bipolar Disorder
·         Brain injuries
·         Charcot-Marie-Tooth Disease
·         Chronic Fatigue Syndrome/M.E.
·         Circadian Rhythm Sleep Disorders
·         Coeliac Disease
·         Crohn’s Disease
·         Epilepsy
·         Fibromyalgia
·         Food allergies and intolerances
·         Hyperhidrosis
·         Hypoglycemia
·         Inflammatory Bowel Disease
·         Interstitial Cystitis (aka Painful Bladder Syndrome)
·         Lupus (all forms)
·         Lyme Disease
·         Mental Health Disorders
·         Metabolic Syndrome
·         Migraines
·         Multiple Sclerosis
·         Multiple Chemical Sensitivity
·         Narcolepsy
·         Primary Immunodeficiency
·         Reflex Sympathetic Dystrophy
·         Repetitive Stress Injuries
·         Rheumatoid Arthritis
·         Scleroderma
·         Sjรถrgen’s Syndrome
·         Temperomandibular Joint Disorder
·         Transverse Myelitis
·         Ulcerative Colitis 
There are 35 different conditions in that list. 35 different reasons you cannot see for the use of that disabled parking badge. 35 different reasons why the person with the badge is not lying.

35 different reasons to think before you speak or act.

I think the point that annoys me most with snap judgements like this is that in a sense it punishes the ill person for doing well, for having a healthy mental attitude to their difficulties and doing their best to participate in a life as normal as possible.

You look relatively OK and you’re going about average every day business? Ah well, there must be nothing wrong with you then.

It becomes apparent sometimes that as a sufferer of long term ill health you are expected to be a spectator of life and not a participant – and no, you can’t step outside of that extremely narrow box, foolish Youngling!

If we ignore general ignorance and all the other negatives which tend to lead to those sorts of assumptions, I think a large part of the problem is that the psychological side of long term well being is disregarded by many, when to my mind it’s equally as important as the physical aspects. You can’t fight the physical cavalry if your mental infantrymen are all missing in action.

Why should you be expected to live life on the sidelines just to fit the narrow imaginings of other people?

I’ll use an example from my own experience. Whilst undiagnosed last year I went to the Bloodstock Open Air Festival – I’ve been going since 2008 and it’s become something of an annual tradition. I enjoy the music, the friendly atmosphere and the chance to see friends I may only have that once-a-year opportunity to catch up with.
(Sorry Doc, Avantasia are more than a good enough reason to be silly!)

Most people were supportive and thought my attending was a good thing – you shouldn’t give up without trying was the general consensus. However a couple of people did start with the “If you’re supposedly so ill, what are you doing here?” comments.

Now, there’s plenty in the cold light of logic which is impractical in attending a three day outdoor festival. However, impracticalities aside I chose to put my mental well being first for those three days and do something I love in the company of people I love.
It had nothing to do with how physically well or not I was– it was a choice based on the fact I’d already had to give up plenty, and that was one thing too many. I’ve said before that I firmly believe that occasionally you have to make logically flawed decisions for the sake of something which is important. You allowing yourself a break and setting boundaries in terms of allowing yourself to participate in life is not only healthy in the long term – I believe it is entirely necessary.

This was something of a lively argument I used to have with my regular GP before I moved up to York. He’d lay out all the practical issues with whatever I wanted to do, and I’d come right back with “With all due respect, I need to do it.” He eventually came to realise that I’m far from a fool and would take all the precautions possible including any suggestions he had to make. I’d make sure I rested up before and after said knotty desire of mine, and I’d do everything in my power to minimise the impact.
During my last appointment with him he wished me luck and said I’d actually had an effect on the way he viewed the overall complex picture in terms of when mental well being contradicts physical limitations. He agreed that sometimes if done sensibly it could indeed be a positive thing.

The Retired Bridgeburner 1, Convention 0?
What I choose to do for my own mental and physical well being is my business and nobody else’s. I respect the informed opinions of the medical experts I deal with, but that doesn’t mean I won’t challenge them if I feel the need to. Passers-by can make all the assumptions they like – nobody knows my body and my health limitations as well as I do, and last time I checked I was not obliged to run my own informed decisions past anyone else, however entitled they may feel to their opinion being heard.

Something possibly worth considering if you are an uninformed by-passer of any ilk – you are seeing only the final product in looking at the ill or disabled person being wherever they are, whether it be a heavy metal festival or sitting parked in a disabled parking bay. You have no idea of the process which led to that – the days, weeks or months of planning and preparation which may have been entirely instrumental in that trip being possible. How do you know if that isn’t the first time the person has gone farther than the end of their street in six months?
How do you know they haven’t gone farther than the end of their street in order to allow themselves to do what they’re doing now?

Think before you speak, and if necessary, don’t speak at all. Your assumptions could do more harm than you know, and they stick in the memory for far longer than you realise.

Wishing you all many spoons xx

Tuesday, 18 June 2013

"Normal People Sick"

(A day may come when I stop taking on contentious subjects and write a post about kittens. But it is not this day!)

As most of you know I have a Tumblr blog (that’s not a recommendation folks - I do nothing but talk geekery and post photos of my cat!), and something I’ve seen a lot of recently is the idea of “normal people sick” in comparison to chronic and/or incurable conditions. The idea of comparing a bad headache to chronic migraines, regular period cramps to endometriosis, or general soreness to Fibromyalgia or other chronic pain disorders.

Believe me I could put in no further consideration and sit here and declaim about lack of perspective, insensitivity and general failure to engage brain before opening mouth, but there’s two good reasons for me to not do so. One, I don’t actually believe  there’s any intended insult there most of the time, and two it’s lazy and I like to challenge the way I’m inclined to think sometimes.

What I feel it’s worth thinking about is that chronic ill health is not something in the sphere of experience of the general population. I would venture as far as to say it is impossible to encapsulate and articulate the quality of that experience to someone whose life is not touched by chronic ill health – whether they are the sufferer or whether they are close to someone who is.

Even though it’s often highlighted just how common some of invisible illnesses are - Fibromyalgia is thought to effect anywhere between 2 and 4.5% of the UK population (Fibroaction.org) – it’s still incredibly difficult to describe in a way people can understand. Firstly, I’ve yet to come up with a simile which accurately depicts what my own conditions are “like”. They are unlike anything I’d experienced before, so even with my somewhat obsessive love of language I’m a little flummoxed.

Secondly, if someone says to me “So it’s like the ache after a good workout?” I am extremely disinclined to say “No, it’s more like every nerve ending being set on fire” – one because it’s too dramatic for my taste, and two because it still doesn’t quite scratch the accuracy itch.

Another barrier to this is that the human brain cannot remember the sensation of pain. We can remember that we have been in pain, and we can remember stimuli or scenarios which resulted in pain – but we cannot “re-feel” it. There’s a fairly simple reason for this – pain impulses come from the periphery nerves outside of the brain and spinal cord and are then fed back to the central nervous system. Memory is a far more complex process taking place in the brain alone, with no involvement from the nerves which form the origin of pain sensation signals.


(Quite! Courtesy of the wonderful butyoudontlooksick.com)

This is a two-fold problem – if you can’t explain it to someone in passing, you probably can’t explain it with absolute accuracy to a doctor either. It at least offers an insight into one of the many reasons these conditions are far from easy to detect and diagnose.

Something which occurred to me was the frequency with which the comparison “Think of the worst headache/period cramps/aching you've ever had” is used to illustrate a description of pain or discomfort in a chronic condition. Naturally the person being spoken to does indeed think of the worst of that type of pain they have experienced, and equates your pain to this. Why? Because you told them to do so.

We come back to a point I've made more than once before – comparison is not the way forwards.

Something I find oft-forgotten (including sometimes by me) is that if a fleeting cold or transient pain is the worst ill-health a person experiences, then they will complain about it. How much they do so and whether the complaining is in any way proportionate comes down to the nature of the complainant; and more importantly it’s a whole different can of worms I have no desire to split open.

I find in a lot of cases this is indeed forgotten and it’s assumed the person doing the complaining about their “normal people sick” is trying to imply their situation is worse. Whilst I won’t deny there are some ignorant people who will play that kind of game – I’m sure we've all met the type who cannot bear to have attention anywhere but upon themselves - I’d hazard a guess that at least some of these instances amount to over-sensitivity and seeking and therefore finding. Not everything is premeditated or indeed directed – but if you go in already looking for such then you’re almost sure to find it.

Having some perspective in what you say or do is a wonderful thing, but it only comes with experience. It isn't a problem limited to health either. If the worst water damage you've had to deal with is a burst pipe or a leaking tap, complaining about said experience will not garner you sympathy from a person whose house was rendered uninhabitable by flood waters for example. Neither experience is invalid, but your perspective is only formed from what you yourself have seen or done.

We’re all human, and we all moan about whatever it is that affects us on that particular day. I’m not a saint – I occasionally see a “I have a cold, it’s the end of human life as I know it” sort of proclamation and feel more than a flicker of irritation, and I will hold my hands up and say that I have no patience at all for the serial “woe is me” sorts, but that comes down to me being quite a pragmatic person by nature. Doing will always be better than moaning in my book.

Recently though I've given this more thought and done my best to get a handle on those feelings. They’re not helpful and as I've said the comments are probably not meant to hurt. Insensitivity is not to be confused with malice

Most importantly of all though, I know I wouldn't wish my ill health on my worst enemy. I’d like to think most of us are exactly the same. 


Wishing you all many spoons xx

Thursday, 13 June 2013

The Knights of Dros Delnoch....

(The fortress of Dros Delnoch by Gaius31Duke of DeviantArt.com
If you haven't read David Gemmell's "Legend", I suggest you remedy that quickly!)

This was quite a big post for me to commit to paper (screen?) and as such I’d ask a little indulgence and patience from readers. It’s not been an easy thing to write but I do have something positive to say about it.

I actually broke down about being ill in the last week. Not just once, but twice.

Why? Well I’ve some new potential pressures on the horizon which have been frightening me for a while, and I certainly think giving thought to those was the catalyst. More simple than that though? Because doing so has been some two years overdue.
This caused some quite necessary self examination. I realised I’ve very rarely given myself any leeway to be vulnerable with my situation.  I had never once allowed a moment of upset, a brief storm of tears. I’d never screamed, shouted or hit anything.

Put simply: I’d never allowed myself to vent properly.
There are a few reasons for this. The first being I’m a person who doesn’t like crying, although the dislike is only for my own tears and doesn’t extend to other peoples – those I can approach in possession of an almost infinite capacity for patience and empathy (by comparison). Despite said profound dislike I’m naturally given to crying far more than I ever have been to shouting or screaming. The odd time I’ve shouted and really lost my temper about something I’ve ended up crying anyway because that seems to be my natural come-down from being angry.

Moreover though I think I’d become a product of others expectations. It had been made exceptionally clear that if I complained I was seen as seeking attention or begging for sympathy. Given that neither is really in my nature I felt the best thing to do was to be quiet – if I never said anything, surely there could be nothing to misconstrue?
On the flipside of this I’d had a lot of people tell me I was doing “so well” and that handling it with positivity was “amazing”.

Now they’re lovely things to hear, and I’m grateful for them. The problem is I’m a perfectionist, and so I couldn’t allow myself to be anything less than “amazing” from there on in. I felt I had to keep up that exact level of positivity, resolve and strength because anything less wouldn’t be “doing well”.
And lastly, crying was giving in. Each tear was a drop of failure. Getting upset was to admit I don’t have everything under control.

Crying meant Petunia had won.
That seems a rather depressing basis for a post, but bear with me. Here at TRB it’s all about the positives and humour to be found, so I promise it gets better.

Firstly, there was a terrific sense of freedom once the weeping had blown over. I’d finally let myself admit that the situation was a bit pants – a more elegant phrase doesn’t seem appropriate. I’d said the words that had been in my head for so long that it seemed I’d been wrestling them forever:

“I’ve forgotten the last time I wasn’t in pain.”

Now, that’s not a moan, a whine or a grumble. It’s stating a fact. I’ve been ill for two years – I genuinely don’t recall not being very clearly any more. I remember being able to do pretty much anything without consequence, but nothing clearer. Although the manner of the pain has evolved, moved round and progressed, I don’t recall not having any pain any more.
I admit I twitched a bit writing that out. Partially I struggle with accepting that it’s OK to say it. Whining to me would be saying it all the time, or constantly posting it on your Facebook status or on a Tumblr page. Saying it quietly to yourself though, or to someone you trust? Now I’ve let myself I would argue it’s not only reasonable, but necessary.  
I’ve been thinking a lot about admitting (my other half copped for all of this, poor soul) that I was frightened. There’s a certain amount of conditioning involved here. I’m a Northern lass, I’m supposed to be as tough as old boots. We don’t do being frightened – it’s too grim up ‘ere for that sort of nonsense.
When you stop to think – why wouldn’t you be frightened? Your body is doing abnormal, uncomfortable and painful things which it shouldn’t be doing. The collective minds of medical science cannot stop it doing so. One of the first things I was told post-diagnosis was “You do realise you’ll be like this for the rest of your life, don’t you? Oh, and it degenerates with age.”
Being completely honest, that’s not a picnic in the park. It’s entirely human to be frightened by something like that. I think I’d actually made it worse for myself in the long run not owning up sooner.
In thinking my way through this post I actually went back through my Facebook feed from the time I first fell ill up to the present day. Most mentions I make of anything to do with ill health are humorous in nature or written with a positive twist – perfectionist tendencies aside, it’s how I am. Do you know how many times I’d actually made mention in a negative context?
Three times.
Three times in two years. So I’m hardly the Queen of Whinging.
One of those times was when I went to hospital for my internal cameras, and after having eight weeks or so to convince myself I was OK in the run up to the day, I reached the doors of the hospital and my childhood crippling fear of them came flooding back. There was a fair bit of death in my family and extended family friends when I was a little girl – hospitals to my young mind were places people went when they were never coming home again.
I turned to Facebook for some support – I didn’t have anyone to ring as everyone was at work. It’s not something I would usually do, but exceptional circumstances call for exceptional measures. It worked – buoyed on peoples words of kindness I went in with my head held high. The fact I then nearly screamed the place down during a botched procedure is an almost amusing afterthought in light of that.  
A couple of friends have told me repeatedly in moments of doubt that they don’t know I need extra support unless I tell them. It’s something to bear in mind – there’s no need to punish yourself for taking the help and support offered. We all need it sometimes.
It’s always worth remembering that everyone deals with their trials differently, just as they treat their successes in different ways also. For some people, a vent over the internet is just the right thing for them to do to let out a bit of frustration and to allow them to continue with whatever they need to do. For others that’s not the way that best suits them – they need to think about it on their own. Some people talk to a couple of trusted companions and nobody else. Yet others never say anything at all. For me, it’s writing a blog and occasionally letting myself have a cry.
As long as the path you find helps you and harms nobody else, then you should never be answerable to anyone else about how you cope. It’s your health and the way you deal with it has to be wholly yours also.
This isn’t a static state of being either – it’s a learning process. Therefore it’s worth bearing in mind that the concept of coping is a fluid one and you will occasionally stumble upon a hidden gem you were unaware of that may help more than whatever you did before. You’re not answerable for a change of outlook or method either.
Strength in dealing with an ongoing difficult situation isn’t measured in the amount you need to vent, or in whether you open up to another person and admit to struggling. Failure is not counted in the tracks of your tears. Nobody is black listed from an imaginary roll of honour of “coping well” for losing their temper or being overcome with frustration from time to time.
At the end of the day, we’re human beings and that makes us fragile creatures – we aren’t made of stone. However, the human race has an incredible capacity to learn, to adapt and to quietly subvert expectations.
And if all else fails I advise this, fellow Dragonborn:  


(We hadn't had a Skyrim-ism for a bit.. Courtesy of ibrokemykeyboard of DeviantArt.com)



Wishing you all many spoons xx

Saturday, 8 June 2013

Different Wings

I came across this post on Tumblr courtesy of The CVS Girl and it set me off thinking (we all know this is dangerous by now!). The original full post was made by GlitterHerpes and is here.She offers the view of a problem with success stories. To quote.

"This is the problem with the “success stories” that pop up every now and then. Of people who overcome their obstacles and go on to do great things. You were born with cerebral palsy and you’re now the world’s leading theoretical physicist. That’s fucking fantastic! I’m really proud of you! But for people who have never struggled, this becomes a point of comparison." 


There will always be extraordinary people - if there weren't we'd have nothing to look up to and no "wow" factor. Reading these phenomenal success stories makes me smile. However, if phenomenal is the expected and set standard then we can have no appreciation of anything "lesser". All small triumphs go unnoticed by virtue of the fact they don't match up to these (for many) unrealistic heights of excellence.

Depending on your health "victory" is something entirely unique to you that may not apply to another person. I count it a victory when I manage to complete a full workout; I talk to others whose health dictates that a triumph is when they make it out of bed in the morning. Why should these personal feats be frowned upon or discredited because of a couple of extremely rare and extraordinary examples? 

Each triumph, however small, is something to be celebrated in the face of something lifelong and incurable. For the moment for most of us there will be no ultimate triumph of a cure. There is no flawless victory. Why should that mean we can't enjoy small and simple daily successes? Sure, they're not as impressive as being a leading theoretical physicist in the eyes of the healthy person who doesn't understand your situation  - why should that dictate how you feel? Nobody knows your body and your capabilities like you do - so focus on how you feel about your day and what you've achieved. 


(Stephen Hawking is absolutely incredible - but he's a one off. Let's not forget the man is a genius - they are very rare.
Graphic courtesy of curiositybydickens.com)


“Well if so-and-so did it, you certainly can do this!” 

Wrong, wrong, wrong, and have another wrong for luck.There can be no standard in chronic illness - the very nature of that generalised term renders standardising impossible. Playing the game of "but so-and-so can...." can constitute waltzing blindly into dangerous territory. Long term ill health is by its very nature a vulnerable state of being - I've made a post here about the negative feelings which are wrapped up in this experience. Being bombarded with "but so-and-so" is distinctly unhelpful and hugely insensitive.

Your health is yours, wholly and utterly. It is entirely personal and completely unique. There is no standard, not even for the same condition as they affect each person so monumentally differently.

This also brings up a point previously mentioned about comparing X condition with Y. I could declaim at length about the nonsensical stupidity of this, but I won't. Just stop it - don't go down that road and think before you speak.

"Everyone struggles, no matter what it is - it’s difficult for them. You’re saying that because this man with cancer tries to walk, I should “try” to not let my anxiety stop me. First of all, you don’t get to dictate what trying encompasses. You don’t get to set the standard of trying."

Continuing the unique point, "trying" is just as impossible a state to generalise. For every single person "trying" will involve something completely different dictated by how you feel that particular day and the limitations your overall health dictates. Nobody else gets to set the "standard" - you do. There is no reason at all that you should ever have to justify what you can and can't do on any given day to another person - after all the difference from day to day is one of the things which makes chronic ill health so tricky to both diagnose and explain to others.

I do want to draw attention to one particular paragraph as I really like the point being made:

"No one is obligated to try and especially not for someone else. It is perfectly acceptable to have a day, week, month, year of just giving up. Of breaking down. It’s fucking human! That’s why it’s called “being strong” when you manage not to, it implies that it’s not the normal, it is not the default - it requires effort."

Correct. An expectation to be strong all the time, never once showing a wavering of resolve or accepting the possibility of doubt is inhuman and ridiculous. I'm not suggesting "being strong" doesn't have its benefits - it certainly does - but as GlitteringHerpes said it's not the norm and shouldn't be expected as the norm. I'd also argue that the state of "being strong" will differ from person to person based on not only their illness but on their own personality also.

People shouldn't be criticised if they are more sensitive and easily upset than others, or if they refuse to put on a false front that they are indeed anything else. The fact we are all of different dispositions is something to be celebrated, not something to be swept aside because it doesn't fit a prescribed view of "being strong". Every single one of us at one point or another will need a good vent - it's healthy as it lets off steam and frees pent up emotion. Whether you scream, shout, burst into tears, punch something (preferably not someone!) or indeed anything else - it's fine. It's healthy in fact - you're human.

This brushes the edges of something I believe more widely in life as a whole - comparison to others isn't healthy. Your life is your own, just as any other person's is. You don't have the same experiences and you don't have the same joys and sorrows, the same trials or the same triumphs.

So how on earth can you expect the same outcomes?

(The grass isn't always as green as it appears.... courtesy of nerdfitness.com)


The only person you should ever compare yourself to in terms of ill health is you on a similar day - and I'm a firm believer there are very few of those. Focus on what you feel like you can do on this particular day and let that be enough. If you feel like pushing the boundaries a little, do so. If you feel like you can't, then don't and do what you feel you can. Winding yourself up with needless comparisons (whether spoken by someone else or conjured from your own head) will not help and will only hinder your small or indeed large successes. 

Save the world domination and paradigm-shifting discoveries for a day when you're feeling a little brighter.


Wishing you all many spoons xx

Saturday, 1 June 2013

... part two

So, I said I'd come back and give my take on that letter when I was calmer. Discussion of part one last night certainly made for an interesting evening.

Because I don't view the TRB as being about negativity - that isn't what I created it for - I decided I'd challenge myself and try to argue both the good and bad aspects of that letter, as I firmly believe there are plenty of both.

(I'd love to have a debate like this!
Courtesy of digitaltrends.com)

So, the good:

I read the piece again this morning and I think I can understand the main point the doctor wanted to express. Whilst "You scare doctors" understandably immediately sets hackles rising, I don't doubt for a second that it's probably true.

I can appreciate being a doctor is a difficult profession. You don't have all the answers and solutions expected of you, and no doubt do meet your share of patients whose expectations are wildly off kilter from reality. That must be an incredibly frustrating experience.

I can understand the frustration mentioned in relation to chronic illnesses. You can never fix us. We are what we are and we repeatedly come to you to manage the unmanageable, to help relieve the unrelievable. I can even as a patient myself understand on some level that this is a frustrating and probably upsetting experience.

In some ways it is interesting and informative to be given the other side of the doctor-patient relationship, and to be given a possible explanation for the sometimes incredibly negative experience chronically ill patients have with their doctors.

And yes, even as a patient I do understand your flawed humanity. Speaking from personal experience I don't go into a doctors surgery expecting a miracle. I go in expecting to be listened to and understood, and to take it from there. I appreciate it's a very human thing to not wish to be confronted with your own limitations.

Reading to the bottom of the article and the tips listed there, some of them are indeed quite helpful. Keeping our eggs in a few baskets is sensible, Limiting the use of emergency departments and the reasons for why - nothing at all wrong with that. I'm sure most of us have had hair-ripping-out frustrating experiences with A&E or our country's equivalent. And I've said myself earlier in this blog - if one half of your doctor-patient relationship isn't pulling its weight, it needs to be replaced. Finding the right doctor is indeed key to overall health and the management thereof.

I can also understand the basis behind the point on "coming on too strong" - I know myself that my poor past experiences lead me to go into each new appointment already feeling defensive and ready to bite. I've already reached the conclusion due to past doctors disinterest that if I don't advocate for my own health, nobody else will.

The principle lesson is don't tar every doctor with the same brush, and I agree. We shouldn't do it, it isn't fair. But I also know from personal experience it's an incredibly easy trap to fall into, and the more bad experiences one has with different doctors, the more defensive and negative one is likely to become.

I can't fairly sit here as a patient and disagree with the fact that there are things patients do "wrong" which are just as counter-productive as the things their doctors do wrong.

(It's worth remembering this is one doctor's opinion - this one seems to gainsay some of it.
Courtesy of tmjhope.org)

However, the bad:

Whilst I can understand the idea behind the piece, the execution is for me the largest part of why it is problematic. For me at least the wording has been quite poorly thought out and comes across as negative and condescending.

Mostly it's the three central paragraphs of metaphors concerning what chronic illness patients "are" to doctors which I found most disturbing:

"But chronic unsolveable disease stands square in our way....We want the miraculous, and you deny us that chance."

"You are the rock that proves how easily the ship can be sunk."

As much as the gentleman does go on to say "I'm not saying it's your fault" the use of those phrases and others like them does apportion blame - they imply that patients are actively doing something to get in their doctors way. We're actively causing the problem, and we're deliberately setting out to tear down the doctor-god delusion.

The intention was more than likely good, but the execution for me makes a mockery of the original intent.

My biggest sole problem is that without wishing to appear a martyr, setting up the doctor experience in direct comparison to the patient one and implying comparative ill-fortune was not a constructive road to venture down.

As a doctor the gentleman has picked his profession, hopefully knowing all the pitfalls which accompany the perks.

As a chronic illness patient, we none of us picked our situation. We, unlike our doctors, had no choice. To make a comparison between a freely made decision and a genuinely powerless swipe of ill-luck is on the one hand condescending, and on the other in my opinion extremely foolish.

A good comparison was made by a friend yesterday - if you work in retail, you're expected to be nice to all your customers no matter what and you gripe only behind closed doors. The point is made in this that doctors get frustrated and angry with their patients - surely the same standard of professionalism should be expected and fulfilled? Do your grumbling elsewhere, but treat your client or customer with respect and compassion.

Offering up "we're human and fallible" as an excuse doesn't hold a great deal of water with me either. We're all human and fallible, but we're still in the wrong if we don't treat other people with the respect they are due - your profession, whatever it may be, does not excuse you from this.

I am very strongly against the idea of playing the game of "if you have a black cat, mine is blacker", and it frustrates me immensely when I see people playing that sort of game with the topic of illness. Having said that it's my belief that the doctor and patient experiences just aren't comparable and to try to do so isn't helpful and offers nothing constructive. However, that's just my view.

(As black cats go, this takes some beating. Photograph by Sarah Plove)

In summary

I'm sure it's clear I don't like the article very much. Whilst I can applaud the intention behind the piece, I have real problems with the execution and wording of said original intention. Whilst (I think) trying to offer an insight into the other side of the coin, the gentleman has ended up in my view embroiled in one-up-manship between doctor and patient and this results in condescension and a seeming lack of a grasp of perspective.

What do others think?