How To Train Your Health Scare

(Given the choice, I'd have much rather had a dragon. Image from fanpop.com)

I wasn’t initially going to write about this, but I think I might be able to turn it into something useful and possibly entertaining, so I think it’s worth a try.

Essentially, the lump I’ve been talking about got quite a bit scarier after my consultation and tests this week. We know nothing for certain yet (test results next week) but it’s almost certainly a tumour and currently being classed as “indeterminate” as it has features of both benign and malignant masses. And so, we wait.

There are definitely both good and bad ways to go about handling the intervening period between tests and results. Here are some ideas:

Talk

Let’s be brutally honest – you’re going to drive yourself completely bananas worrying about the problem until you get a definitive answer. This is normal and expected. However, it can be made at least a little bit easier having someone to talk to. They can’t fix it, but they can let you bounce your thoughts off them and just be there for support, which we all need from time to time. Bottling it all up will not make the situation any easier or less unpleasant.

If nothing else, talk at your pet. I say “at”, because I have a cat and we all know they don’t deign to talk “with” mere mortals. Fiddler’s contribution to proceedings so far has been to try and sit on my face and yell at me this morning. Truer words than “there is no snooze setting on a kitten who wants his breakfast” were never spoken.

A word about Google

Rule One – Don’t Google it.

Rule Two – Don’t Google it.

Rule Three – Why aren’t you listening? See Rules 1 and 2.

In all seriousness, it won’t help. It will only make you worry more and add to the confusion. Spare yourself at least some anxiety and don’t go look it up. If you really feel you must, do so with a championship ski slope’s worth of salt and a very critical eye.

Keep busy

This doesn’t have to mean tearing around at ninety miles per hour, but mostly it’s about keeping your mind occupied so you don’t dwell and end up, as mentioned, driving yourself up the wall. For me this meant going back to work, where I can’t help but be occupied because I’m a secretary to seven people (who are proving once again they are in fact some of the nicest people in the world). My friends took me to the pub on the day of the hospital visit, and I’ve a few things planned between now and next week’s results. One of those things is putting together a three door wardrobe whilst trying to keep Fiddler’s “allen key = toy” confusion at bay.

This leads nicely into….

Look after you

You’re allowed, after all. Do whatever you need to do to feel calm and content (or as close to that as you can get). If needs be, spoil yourself a bit. Do all the things you would usually do when you want to feel better. For me at the moment that’s tearing through my Springsteen collection and devoting rather a lot of time to my latest re-read of the Malazan series (me, fangirl? Perish the thought), and watching some really rubbish telly of an evening after work to help switch my brain off.

Also tea and cake, because I’m British and why not?

Most importantly though, make yourself the most important thing for the time being. You’re allowed the break from everything else, and those who matter will understand. I don’t think it’s possible to be worrying about a health scare and lots of other things at once without spontaneously combusting, but we shouldn’t really test that theory.

(Metaphors amuse me, I make no apologies. Image from bbc.co.uk)

Be the Rhineland

I am a demilitarised zone, you are not Germany.

Drama is right out with something like this. It really is important not to get embroiled in the sort of silliness everyone encounters at some point, because in a lot of ways people (all of us) are a bit stupid. We get upset about silly things and we let those things grow out of proportion, and in doing so we make angry phone calls or send ill-thought out bitchy Facebook messages, then the receiving party does the same and it all gets rather messy.

Now is not the time to be involved in those sorts of things. Look after you, ignore everything you need to and everyone else can go have a World War somewhere else. Be antisocial when you need to be, and this sort of thing qualifies.

Mind you, I live in a village in the middle of nowhere in the deepest darkest North, where people think might not have discovered fire yet. It’s really easy for me to be antisocial when I want to.

Be kind to yourself

You’re allowed to be upset, and you’re allowed to be frightened. It’s completely normal. No beating yourself up for being a human being is allowed at this juncture.

Be human- it’s what most of the rest of us are, and to be honest it’s alright.

Have you had a health scare? What did you do while you waited for clarification? I’d love to hear others experiences of this sort of thing as (happily) it’s completely new to me.

Wishing you all many spoons xxx

The Art of Being Polite II

In which Hannah seriously considers never cutting or tying up her hair ever again.

 

I mentioned in my last post that I was having some problems with a swollen lymph node in my neck. Annoyingly, it’s still here. Blood tests showed no sign of current infection and as there is no history of recent infection or virus that I’m aware of, I’m off to see an Ear Nose and Throat consultant in the near future to sort out a biopsy.

 

Bang went my hopes of it just being something you could stick something sharp in, drain and have done with!

 

(www.patient.co.uk)

 

The point of this post however is to discuss other people’s reactions to it thus far, which today in particular became quite interesting. Usually I wear my hair down and so you can’t see the lump at all, but today I needed the mane out of the way and decided to stop being silly about it. It’s a lump at the end of my bottom jaw which is about two inches long by an inch in length. It’s not as if there’s a football growing out of my face.

 

Or, so I thought…

 

“What’s that on your face?"

 

My ear , given where you’re vaguely pointing. Oh, you mean that fairly small unobtrusive lump that really isn’t the major event you’re pretending it is? That? It’s a baby monster that if you don’t stop pointing at it will jump out and eat you, Alien style.

 

 

“You’ve got a lump on your face. Why?”

 

Well spotted. If I knew why, I doubt I’d be a legal secretary.

 

 

“I can’t stop looking at it!”

 

You have a approximately 160 degrees within which you can turn your head. I humbly suggest you pick a degree my face isn’t currently occupying. Also, it’s really not that alarming. Face on you can’t see it at all.

 

 

“Aren’t you worried about what it might be?”

 

No, not at the moment. As a society we’ve learnt to run around panicking at the first sign of an unexpected lump of any kind (and I agree you should always get a lump checked out by a doctor to be on the safe side) but the chances of a swollen lymph node (even without the obvious presence of infection) being something sinister are actually really, really slim.  The most likely scenario at this point is that the biopsy will reveal a benign growth or cyst of some kind, or that there is in fact some sort of underlying virus I’m unaware of that said lymph node is arguing with. Either way, I don’t really think there’s any point working myself up about it at this stage.

 

 

“Would it hurt if I poked it?”

 

No, but *you’ll* hurt if you poke it.

 

 

“Shouldn’t you be covering it up?”

 

Oh for goodness sake.  It’s completely unobtrusive. It’s not lit up like a Christmas tree or declaiming in Dova. Are people really that freaked out by anything that’s just ever so slightly off-kilter?

 

 

 

“You know, you look a bit peaky as well…"

 

Say it with me: “pale complexion”. Yes? Good. I realise that’s tetchy of me, but I do get tired of being told I look ill when it is in fact just my normal skin tone. When I’m actually ill, I look like a one of the Drowned Dead  from Dungeons and Dragons. Believe me, you’ll know the difference if you see it.

 

 

 

And so we learn “normal” sick is actually no different from invisible illness in terms of the propensity for silly questions. And no, I didn’t actually say any of this, merely thought it all pointedly.

 

Also, in the midst of all this, I feel slightly mean for not congratulating my body for circumventing Petunia and actually managing to be sick all by itself. It’s not actually managed this since she made herself at home until now. I feel like a bizarrely proud parent.

 

Gold star, body. Now pack it in.

 

 

Wishing you all many spoons xxx

To Google or Not to Google? That is the Question

Well, actually, no it isn’t. On a basic level you should never do a straight up Google search for anything health related. Or, if you do, you should be prepared to take anything you find with half the planet’s production of salt in accompaniment.

 

I say this after a recent doctor’s appointment whereupon I was, with good humour, banned from Googling the problem because as we both agreed “Google will assure you that you have cancer”.

 

To give a short background, I have a solitary swollen lymph node (or that’s what we’re assuming it is at present) at the back of my jaw. It’s come up very quickly and having ruled out throat and ear infections doesn’t seem to have an underlying reason for deciding to wake up and party. I get the results of rushed-through blood tests tomorrow, and as far as I understand it the urgency is to do with the size and character of the swelling in that it’s hard to the touch (but it does move, which apparently is a good thing).

 

For the moment then, I look like I have about a couple of inches worth of spare lower jaw on my right side.

 

(All the better to eat you with, etc.

Image from www.boneroom.com)

Let’s examine this example for a second. Good old Google would no doubt inform me that I have a Hodgkin’s Lymphoma, being in the most prevalent age bracket and showing a couple of the possible peripheral effects of recent weight loss and a general status of “under the weather” – because as we all know, they’re completely specific to cancer.

 

I’m positive (knowing a great deal more about my circumstances than Google does) said weight loss and my general feeling of malaise have to do with the horrible build up to our move and the fact we’ve barely stopped since in terms of unpacking and the general things you have to buy, put together and do when you move into a new house. Nobody’s kidding when they say moving home is one of the three most stressful life events you can experience (alongside a death and a divorce).

 

In fact, for the sake of accuracy I even checked this earlier today (sorry Doc, but you can’t knock me for checking a theory) – put in “solitary swollen lymp node” or indeed “swollen hard lymph node” and the top few search results will be articles with the words Hodgkin’s Lymphoma helpfully emboldened, just in case you missed the fact that YOU DEFINITELY HAVE CANCER.

 

Not cool, Google.

 

I am of course being monstrously sarcastic here, but I’m using this to illustrate the point that unguided and unrestrained internet searches are not helpful things in regards to health. Particularly as patients with long running conditions with unspecific and widespread symptoms, it is productive and helpful in the long term to wise up about how and where to search.

 

Firstly, don’t just Google it. If you need to search a particular symptom or condition, use medical websites. Patient.co.uk is a good resource, WebMD is another. You’ve more chance of getting something specific on a website like that than you would have on a general search engine. If you have a diagnosis already and are trying to find out if a symptom is typical or could be something new, head to websites specific to your condition.

 

If you can find a forum board dedicated to your condition, so much the better. Start a topic about your symptom (if you can’t find any existing ones) and you’ll find most patients are happy to share their experiences in the hope of being able to help.  

 

I’m probably teaching many readers to suck eggs, but it is so important to not fall into the traps of believing whatever Google tells you, particularly if you are new to the realms of chronic illness and finding these things out for the first time.

 

More importantly, bear in mind that even those sorts of websites can only give you a general overview, or an “average” take on the symptoms and the condition. They’re based on how a condition “usually” presents or what a symptom “generally” indicates – which is why they are not to be wholly relied upon in conditions where the number of symptoms is quite large, or where the main symptoms are general such as fatigue or joint pain.

 

Using those two as examples, there are a myriad of conditions in which those two either separately or together occur, and fatigue in particular is one of the most general medical symptoms in existence. Fatigue can be a symptom of just about anything - yes Google, including cancer!

 

Taking the above into account this brings me to my most important point. Never self-diagnose.  Do your research and compile any information you think is relevant, but always take it to your doctor.  The information available on the internet, though helpful, is just too general to be used to form a concrete diagnosis.

 

Even when backed up by the experience of other patients, remember that chronic illnesses usually have the particular quirk of being quite different from individual to individual. A symptom match doesn’t necessarily dictate a diagnosis match, however much it might appear to “fit”.

 

If you don’t feel you’re getting anywhere with a doctor, always remember you have the right to request a second opinion or indeed take you and your health elsewhere. It’s important in long term ill-health to maintain a good doctor-patient relationship and that means both halves of the relationship being happy that the other is pulling their weight. If you want further reading material resources, you can always ask your doctor where they recommend you looking.

(“In the name of love” or “Hammertime”? You choose!)

In my experience doctors will appreciate the question far more than you (however well-intentioned) attempting to be a Google physician.

 

On that note I’m going to leave you, as I need to go do some reading into why it might be that Fiddler is seeking to destroy a particular patch of our hall carpet which seems to have offended him in the last few days. Maybe it’s calling him names after we’ve gone to bed of a night.

 

Answers in the comments section as to which of them we’re betting Google thinks is the potential cancer patient – the cat or the carpet.

 

I hope this is taken in the tongue-in-cheek manner in which it is intended, and I hope it is helpful. It’s very easy to get caught up in internet research that appears to fit, but it’s always best to approach this with a critical eye and with your doctor’s guidance and support.

Wishing you all many spoons xxx

The Naming of Cats

But I tell you, a cat needs a name that's particular,
A name that's peculiar, and more dignified,
Else how can he keep up his tail perpendicular,
Or spread out his whiskers, or cherish his pride?
Of names of this kind, I can give you a quorum,
Such as Munkustrap, Quaxo, or Coricopat,
Such as Bombalurina, or else Jellylorum-
Names that never belong to more than one cat.

The Naming of Cats - T. S. Eliot

Much and more has been happening! We finally completed on the Upside Down House this week!

What a relief! We move in next week, so I will be spending the rest of the weekend playing several rounds of High Fantasy Tetris.

What’s High Fantasy Tetris, you ask? A game I invented when I moved up to York – I have a thing about getting all of the same series of books in the same box, no matter how many times I have to re-pack said box to make it so. This is usually fine until there’s more than ten books and they’re all doorstops.

Hello, packing the Malazan Book of the Fallen! We meet again!

However, something we didn’t particularly foresee happened recently too. We met a cat.

After losing a beloved pet there is an expected period of grief, but once you naturally come out of this there next comes a phase where the house feels perpetually empty for lack of a four-legged presence. As we are unashamed cat people, we soon realised there wasn’t a chance of us not looking to have another cat once we’d moved in.

We’d pretty much settled on the Cats Protection shelter in York, as one of the only ones we enquired with who were prepared to match individual cat to individual circumstances instead of having a blanket “no indoor cats” or “no cat flap, no cat” policy. There’s nowhere in the Upside Down House suitable for a cat flap, so we decided to stick to the one place that seemed sensible.

(http://www.cats.org.uk/)

We’d been keeping an eye on a particular cat for a while on their website, and I had started to wonder what the unspoken facts about him might be. He’d been on there for a long time and was a young and very handsome tabby cat who was specified indoor only on his profile. The more weeks went by with him remaining unreserved, the more curious I became.

Eventually curiosity got the better of us both and we called to enquire about him. My instincts weren’t wrong – he is FIV positive. For the unfamiliar, consider it roughly the feline equivalent of the HIV virus in humans. This explained the restriction that he must remain indoors, and the shelter invited us to come in and meet him and discuss the circumstances involved in looking after an FIV positive cat.

As it turns out, it’s not as complicated an enterprise as you might think. There will be potentially a few more visits to the vet than with a completely healthy cat (but there are no guarantees an FIV negative cat wouldn’t need unexpected trips there either) and there is the possibility of a somewhat shortened lifespan. However, to my mind when you take on a pet you take on the painful inevitability that you will outlive them, and with love and care there is every chance of an FIV positive cat living a long and happy life.

What saddened me was that he had been there for so long because people heard this complication and ran. He might be very handsome, playful and loving, but he’s different. There’s a little more risk and a little more complication and the lack of a squeaky-clean bill of health, and so nobody wanted to give this little cat a chance. I’m not sure I entirely have the words for how saddening that was, particularly after meeting him and him being such a friendly boy. 

It goes to prove a point that continually annoys me - some people get a cat because they think cats are "easy" and don't require much looking after. Give them a possibility outside of their "easy package cat" box and they run for the hills. 

There’s a line in a film called Seabiscuit “You don’t give up on a life just because it’s banged up a little”. In the film that applies to both the eponymous equine and also the people around him, and to me it should indeed extend to people and animals alike. We’re all different, human and animal, and that means we all have different challenges. None of that makes us unworthy of a chance, and of a little bit of care and compassion.

The little tabby cat will be somewhat ill for the rest of his life (he’s only seven months old). What struck me immediately was that in actual fact, so will I.

Does that have to mean I’m doomed to be passed over in life in favour of healthier people because I’m that little bit more complicated? I sincerely hope not.

Happily, from now on neither will he.

(This is his Cats Protection photo - I will share some of our own soon!)

Newly-christened Fiddler the tabby will be coming home with us next weekend. 

Whether my own health experiences and my feelings about them played any part in the decision I’ll never be one hundred percent sure (I suspect they did though), but there was never really a much intention of us not giving him the chance of a loving home when so many people wouldn't. 

Especially not considering he made a bee line for me and after a quick cuddle proceeded to try and eat my coat buttons for reasons I can’t pretend to understand – there’s something just a little (read: a lot) endearing about that.

Wishing you all many spoons xxx

The Art of Being Polite

(I do, and I very rarely do. Image from www.keepcalm-o-matic.com.uk)

I’m British, and as you may be aware one of the things we British are known for (apart from Stephen Fry, Doctor Who and corgis) is being polite when we’re actually thinking something quite rude. We’re staunchly passive aggressive in this regard - it’s up there with such known British quirks as automatically saying sorry for things which we know were the other person’s fault.

 

I have the added bonus of working in the legal system, which takes this to a whole new unimagined level. Beginning a sentence with “With respect”  in a legal letter for example roughly translates as “I’m going to explain this very slowly to you, because you clearly have the intellectual capacity of goldfish."

So, for a bit of light-hearted humour, I decided to apply the “What the British say vs what they actually mean” approach to some of the most irritating/silly questions I’ve ever been asked about life with a chronic illness.

 

Before anyone potentially gets offended, I will just point out this is very tongue in cheek. I am well aware most people's curiosity is completely harmless, and that the vast majority are not as obtuse as the questions they sometimes ask. I merely ask you consider the more colourful responses you yourself may consider if you'd answered the same question fifty-odd times and counting.

 

So, for a bit of fun:

 

 

But… how can you not drink alcohol at all?

What I say: Well, it took a bit of getting used to but now I don’t really notice. I miss the odd specific drink but nothing major.

What I mean: I walk up to a bar and I order that-which-is-not-alcohol. It’s my superhero power.



How can you be in pain all the time? That’s not even possible.

What I say: That's what a chronic pain condition is. It's not particularly well understood, as such there's no cure so it's difficult to know how best to go about preventing patients from being in pain. It's just one of those things.

What I mean: Because wizards. Moron.

(See? Wizards... image from diydespair.com)

So it’s a chronic fatigue condition. Why don’t you just go to bed early?

What I say: Sadly it’s not the sort of fatigue that any amount of sleep particularly benefits. I still have to be careful how much I do on a daily basis and sometimes even that doesn’t work.

What I mean: If you honestly think I wouldn’t have tried that in the last three years, I suspect your brain is missing.

Maybe you just need to go out more?

What I say: That’s not always a good idea for various reasons, but I do get out as much as I’m able to.

What I mean: No I most certainly don’t, going out is how I end up talking to people who ask silly questions...

(....what?)

Don’t you think it’s all about attitude?

What I say: With respect, positivity can’t wholly solve any medical issue. I think there’s a great deal more to it that’s a fairly dismissive assumption.

What I mean: I mean no respect whatsoever because I think you’re an idiot. I suspect that’s not the attitude you were referring to, however.

Aren’t you a bit young to be  ill?

What I say: A lot of chronic conditions typically manifest in the early 20’s, but can crop up at any age. It’s just one of those things.

What I mean:  No, but I’m definitely a bit young to be this cynical about people…

How come you don’t look ill?

What I say: Because all the symptoms are internal - that’s why it’s an “invisible” illness.

What I mean: Say it with me, "invisible". There’s this thing called a dictionary - perhaps you should try it.

(Nectar of the gods. Also, just to be clear, we Brits don't all serve tea in the finest china. We aren't all the cast of Downton Abbey.)

*In response to not feeling well* - Do you want a cup of tea?

What I say: Yes, I’d love one.

What I mean: I’m British - that’s a completely rhetorical question.

We’re a strange bunch, we Brits. However, keep me in copious amounts of tea and I’ll allow you to ask me all the stupid questions you wish.  Cake is also good.

Wishing you all many spoons xxx

WEGO Health Activist Awards 2014!

(The main WEGO Health Acitivist Awards page)

So, it's that time of year again!

2014 is the fourth annual WEGO Health Activist Awards, set up for people to recognise the health activisits who enrich their lives in some way shape or form, for which they can nominate them in any of 14 categories, which are:

• Advocating for Another
• Best in Show: Blog
• Best in Show: Community/Forum
• Best in Show: Facebook
• Best in Show: Google+
• Best in Show: Instagram
• Best in Show: Twitter
• Best in Show: Youtube
• Best Kept Secret
• Best Team Performance
• Health Activist Hero
• Hilarious Health Activist
• Lifetime Achievement
• Rookie of the Year

Much to my pleasant surprise, I had to re-activate my award profile from last year as The Retired Bridgeburner has been nominated for three awards! I'm up for Best in Show: Blog, Best Kept Secret and Hilarious Health Activist.

Thank you so much to those who nominated me! As the profile is now active you can add your nomination reason if you wish, anonymously or with a name. I'd love to know who did nominate me (either on the profile page or via another form of contact) so that I can say thank you personally!

I would absolutely love to be shortlisted this year (wouldn't everyone?) and if you'd like to help me on my way, please pop over to the profile page below and click the "Endorse" button. It takes five seconds and is one of the factors which is taken into account when choosing the shortlists for the various awards. A few people have already done so, and again, thank you very much!

I'm genuinely quite overwhelemed. I always said that if this blog helped one person, it would be enough to make doing so worthwhile. It would appear I was a little short of the mark in counting in singular.

I consider myself blessed with a wonderful readership, you guys are wonderful.

Without further ado, the profile link is below. Nominations are open until December 31 and endorsements are already available and will continue past this date (final date to be announced, I will let you know when I find out).

My award profile

One very happy Bridgeburner wishing you all many spoons xxx

"Just One"

This year's Invisible Illness Awareness Week campaign was "Just One". We are all "just one", but as a chronic illness patient you are one of over one hundred million sick people the world over. You are someone, and you matter.

I missed the week this year with everything going on (as detailed in my last post), but although a little late (which is better than never) I wanted to show my support regardless as the campaign is a wonderful one and raises awareness and community spirit every single year. 

(http://invisibleillnessweek.com/)

I am Just One. There will only ever be one of me. There will only ever be one of Petunia.

My chronic illnesses are fibromyalgia (with associated infrequently active costochondritis) and interstitial cystitis. Together they make up Petunia, a joke run amock comparing them to a stroppy teenager living inside me who inevitably ended up with a name which stuck.

They present difficulties. There are activities I had to give up or restrict, there are plenty of things I have to turn down on the basis of being too tired and in to much pain. I don't drink, I have a restricted diet and many every day activities are far more difficult than they should be. Sometimes they are impossible. My sickness record will inevitably never be perfect. Sometimes I am entirely housebound.

So, in some ways I am "the one who's ill". I am the one who is tired a lot and leaves every event early. I am the one who is sometimes unreliable and doesn't show up at all. I am the one viewed as awkward when I raise concern about what seem to be normal, commonplace things. I am the one with the funny diet who doesn't drink. I'm the one who has far less energy than is normal for a mid-20 year old. I am the one who sometimes can't stand the most common place of noises, and yet other times is completely fine.

Sometimes I am the one for whom existence can be painful and exhausting to the point of tears.

However, that is far from all I am.  In being "just one" we can all be far more than our illness.

I am one of the ones who is an administrator for the Chronic Illness Cat community, where we are all far more than just one. We're a community and we endeavour to laugh and poke fun just as much as possible at the colourful array of difficulties life with chronic invisible illness presents.

I am the one who creates. I am currently doing some of the artwork for a frined's table-top RPG (I promise to stop blogging and get it finished soon!), I make things for those I care about and I most recently re-created the map of Middle Earth for our new house. No matter the energy this takes, I still continue to do it.

I am the one who strives against Petunia for the things I enjoy. I am a fan of music and theatre, and we are regularly at odds over whether attendance is worthwhile. I love animals and go out of my way to spend time around them in some way shape or form. I still firmly believe that some things are worth the price inevitably paid. I am the one who makes that decision time and time again to fight and to not give in or give up.

I am the one who feels things very deeply. Instead of being embarrassed by my emotional attachment to books, films and other media and listening to the cynicism which would present this as "wrong", I have embraced this as part of necessary and healthy catharsis in my life. I am the one who has shed tears over The Silmarillion with each new re-read, and who wept for the last thirty pages or so of Steven Erikson's The Crippled God (and not for the first time in that series). I am the one who will never be embarrassed by this again.

I am the one who conisders herself lucky enough to know some of the best people in the world. I am blessed with some truly wonderful friends who make everything more bearable, both near and far. I am fortunate enough to have an incredibly supportive family.

Lastly, I am the one who strives to make her small corner of the internet a helpful, informative and cheerful place for any of that one hundred million who want to drop by and read. I am the one who will continue to do so for just as long as I can, in the knowledge that if I can comfort even one person then all the spoons which go into the blog are worth it.

I am "just one" wishing you all many spoons xxx