"Here at the end of all things"

As I'm sure you've noticed, TRB has been very quiet for some time.

I thought it was probably about time I made the silence official, but if you're looking for anything particularly profound I'm afraid here isn't the place for it.

The heart of the matter is that I no longer have the need to write here.

When I first started the blog, underneath a desire to help other patients with my writing (two parts whimsy, one part ranting) was my own need for catharsis. Nearing the end of an eighteen month struggle for a diagnosis (by that point, any old one would have done, correct or not!) I was frightened and angry to the point of savagery. Nobody knew what was wrong, suggestions had been made it was entirely somatic and a product of my imagination, and in place of the support I'd expected from friends I was receiving from some only spite and suggestions I was merely hoping for attention.

I was in short absolutely furious. There really is nothing like pure, white-hot fury to get your creative juices going and I channelled them here, into words.

(A design on Zazzle. It made me chuckle.)

 

Part of the silence is that I'm just not angry any more.

Well, that's a bit of a lie. I am angry - I commute by train every day to and from work, there isn't a chance in the world I'm not angry, at least for the amount of time it takes me to escape the station at rush hour. However, I'm not angry about my situation. That particular fire has gone out, and I'm able to let ignorance wash over me and ignore it, something I struggled to do before.

The second and possibly more important part is that, touch wood, I've now been mostly symptom free for nearly six months.

I'd feel entirely hypocritical and just plain wrong if I carried on writing as a patient when I'm not actually feeling much of the effects at present. It feels like deceit, whatever the best of intentions behind it.

I am not foolish enough to think the problem has entirely disappeared, but it is certainly lying very low. It seems to have been that since my cancer scare and subsequent operation in December Petunia has gone into a lengthy hibernation. I will not be upset if she decides she likes sleeping better than she does arguing with me.

I have been very fortunate in that recent changes in my circumstances have resulted in far less stress than was previously a part of my life. I have finally landed firmly on my feet in a job I love, and have the opportunity of really furthering my career in that I am being sponsored through my legal exams to become qualified. This also means a lot of my spare time will be taken up with studying, but I finally feel in a place with my health where I can take that endeavour on.

My other half and I are lucky enough to live out in the countryside where it's very peaceful. I no longer walk home from work and wonder how many drunks I'm going to have to dodge on the main road before reaching the safety of my front door. The most lively think I am likely to encounter on my new route home is the pub Labrador doing his constitutional rounds, who occasionally likes to escort me home.

Never fear, I haven't become one of those people. I don't think that stress is the sole cause of Fibromyalgia and that de-stressing will cure you. Perhaps I am just mild enough on the spectrum that it makes enough of a difference to let me function mostly normally again.

So, as I said my own personal need to write here has passed.

I know the blog has been helpful to readers, because plenty of you have been kind enough to contact me by one means or another and tell me. To have started up expecting maybe ten readers a month, to be here twenty-eight months later with one hundred and forty four posts and fifty five thousands views, two rounds of nominations in the WEGO Health Awards, and having being made part of the Chronic Illness Cat team is the sort of positive reception I couldn't have dreamed up if I'd tried. As such I'm not deleting the blog, merely ceasing to write any new content. It can stay here for those who want to read it, and hopefully it might continue to be helpful.

So, thank you to everyone who has been reading. Thank you for your comments, for making me laugh, for correcting my typing (sometimes you wouldn't believe I'm a secretary!), for sharing your stories with me as I have done my own. Thank you to everyone who nominated and endorsed me for WEGO Health, and especially thank you to everyone who got in touch in December before we got the good news. There were genuinely more than a few tears for all the kind messages.

I have enjoyed our conversation very much, and I hope you have too.

(Image from sfgirlbybay.com)

Wishing you all, as ever, many spoons
xxx

"You'll change your mind when you're older"

A new post! I return from my self-imposed something-of-an-exile!

This topic has come up at work recently (I work in a family law department - the fact that children come up in conversation is hardly to be unexpected) and I thought it merited a discussion. Thankfully, my coworkers are not the type of people who thoughtlessly say the things I'm about to talk about, but in my experience they've been in the minority whenever I utter those dreadful words "I don't want children".

... the smelling salts are over there, by the way. I put them there especially.

If you're wondering what this topic is doing on an illness blog, bear with me. It will become abundantly clear as we go on.

First off though - I'm not writing this to make any kind of dig at anyone who does in fact want children - or has put said decision into action and has them already. You're in the majority, and I respect your decision equally as much as I respect my own. It really is a topic that deserves the "live and let live" approach.

There is something of a set group of responses that are usually trotted out in response to the above daring declaration. I'll look at a few of them in this post, hopefully point out why they're idiotic, and then explain my own thoughts.


"You'll change your mind when you're older."

Hello there, Ghost of Christmas Future. Pray tell, who invited you?

Putting aside the likely false assumption that you've somehow journeyed into the future of my personal path through life and seen the evidence of this, I see very little reason why you express this with such sweeping certainty.

Using a different example, when a child at a young age states their desire for a certain career when they are older and through studies and experience they achieve said ambition, this is congratulated as "driven" and "ambitious". Unless the child in question says "The Hands of Blue" or "The Dark Lord Sauron" anyway. The fact they had made this decision at a young age is not questioned once it is made real.

Why therefore is it expected that having made a decision at a relatively young age that you do not want children is foolish, whimsical or just dead wrong? If it is accepted that a person can "know what they want to do with their life" in terms of career - isn't the desire or lack thereof to reproduce just another aspect of that same life?

As it happens, the decision for me has not wavered once in twenty five years. There are very good reasons it will not alter in the future.

(Put simply, yes. I've had my head screwed firmly on for a good few years now.

Image from www.whisper.sh)

"You don't know what real pain is until you've given birth."

Can we be clear about something here?

Pain is bad. Pain happens when your body tells you something is wrong - consider it a message of "Stop doing that, you imbecile". There are many different kinds of pain. Everyone feels pain differently.

So why are we competing about it? Why do you want to own a kind of pain more special than everyone elses? Is there someone out there I don't know about who is distributing pain cookies to the winner? Do you have any idea just how idiotic that comment actually is? Why am I still talking to you? 


"You're not a real woman if you don't want children?"

Take off everything after "real woman" in that sentence - because I honestly don't care what the context is, that is a disgusting thing to say to another person. If you've ever even thought this you should be ashamed of yourself.

Plenty of women out there cannot have children for many different reasons. Are they no longer to be accorded the status of "real women"? In the same breath, are men who suffer from fertility issues not "real men"?

Some food for thought - just because I have little interest in children and no desire to have them does not mean I'm a monster. I'd never harm a child. I'm perfectly capable of being a half-decent "auntie" - I'll watch endless Disney repeats ad nauseum without complaint and I give good hugs. Should a child be left in my care I'd give it my full attention and keep it out of harm's way just as much as physically possible, because I am not a monster.

A lack of interest and traditional perceptions of what a "maternal instinct" is does not make me a soulless vessel without feeling. It just means I think differently to you.


"You'll be much happier/your life will have more meaning when you have children."

At what point in this conversation did I express I was in any way unhappy, or that my life lacked for meaning and purpose?

If that's how you feel about your own existence, then that's absolutely fine. I worry a little about whether you were just sitting in your bedroom drooling for the however many years before you had children for you to make such a sweeping statement, but it's entirely up to you.

Having said that, how dare you assume my life is in any way lacking just because it is different from yours? What other metaphorical lines in metaphorical sand do you draw for the standard of existence of another person? Would I be much happier and feel greater fulfilment if I had your job, your lifestyle, your experiences?

Everyone's life is their own. Stop imposing your square peg onto someone else's round hole and expecting it to change shape. I am well aware I am in the minority in my disinterest, but beating me over the head with your majority status will not change anything.

(Another good, solid reason why you're wrong. 

Image from pinterest)

Me, then.

Putting my general disinterest aside, I have known for as long as I can remember that children were not for me.

There's a rather eerie passage in David Gemmell's Legend where Druss discusses how he knew he would die in his sixtieth year. He states he could never imagine sixty one - he just saw empty black if he tried to do so. That's roughly the same as me with the matter of having children - I am completely incapable of imagining myself with them. The idea is almost an alien one.

On a more practical level, with Petunia hitchhiking my body would not pass its metaphorical MOT with flying colours. If we put aside the potential havoc a pregnancy could very well wreak upon me, when I am symptomatic I am not in a position to be responsible for a dependent. I can't always think straight, and pure instinct can only do so much to combat cognitive dysfunction. I wouldn't always necessarily be physically capable of averting something dangerous. There have been days where I could barely look after myself, let alone another small and vulnerable life.

For me that alone is reason enough. I don't feel in a position to reasonably have a child dependent upon me. That is in no way a judgement on mothers with health conditions - I'm sure you cope admirably, and more power to you - but it is purely the reasoning I've come to in my own mind and fully accepted. To put it bluntly: my castle, my rules.

In conclusion, and to answer that last ignorant question - I am fortunate enough to be happy with my life. I am also fortunate enough that I am fulfilled on numerous levels by my life without the addition of anything else.

A final thought - people who do not want children are almost always questioned as to why, but I've yet to see the questioner and respondent be reversed all that often.

If I have to have a reason to not want children, doesn't it continue logically that you should also have one for wanting them?

"There is the door. Be sure to take all your pompous second-guessing delusions with you."

- Kellanved, The Malazan Book of the Fallen

Have any readers encountered the above or similar? What are your thoughts? 

Wishing you all many spoons xxx

"Don't read this or you'll go blind"

(For any Erikson fans who haven't tried these yet, I recommend you do. They're hilarious.)

 

The title above is the “warning to lifestyle fascists everywhere” which opens Steven Erikson ‘s novella The Healthy Dead, one of the Tales of Bauchelain and Korbal Broach. So, if you don’t like what you’re about to read and this results in loss of vision (whether temporary or permanent), I accept no responsibility whatsoever. I told you not to read it.

 

The Healthy Dead parodies modern society’s obsession with health and fitness and “what is good for you” with gleeful aplomb, hence I’m echoing the warning to start this post. There’s a reason for this.

 

I’m sick of being bombarded by what is (in someone else’s approximation) “good for me”. Aren’t you?

 

This week is my first week back at work post-surgery, and I’m virtually singing from the treetops in rapture. The novelty of being at home recovering had more than worn off.

 

Anyway, I set myself up for something of a fall in picking up the magazine left on the seat next to me on the train home one evening. I think it was Glamour, but in all honesty I can’t remember. You may not believe me, but faced with a choice between the denizens of the 17:52 to York or burying your head in any reading material to hand so they don’t talk to you, you’d read Glamour too.

 

One thing that should probably always be borne in mind with magazines like this is that whatever you’re doing is not enough. However fit you are, there’s always an extra spinning class you could take (I still don’t know what spinning is), and however happy you are there’s always another yoga session to be completed. I think I mentioned buying a yoga DVD some time ago. It’s still at the bottom of one of the moving boxes, probably breeding weird yoga-doing dust bunnies by now. In short, you should always bear in mind that YOU ARE NOT GOOD ENOUGH.

 

So, don’t read those sorts of things and that solves the problem. Right? Right...?

 

Sadly not, because in my experience you never have to go far to find someone who has taken this ideal to heart and now thinks it’s their life’s mission to fix everyone else. By fix, I mean make sure they do things their way. Deviation is not tolerated and individual thought is most certainly not required.

 

On a basic level, we all know eating well and exercising are good things. I’m not here to argue with that. However, I am endlessly irritated by the idea that only one person’s preferred form of exercise is valid, or that their lifestyle is eminently superior. I can’t quite decide whether I think these one-size-fits-all people are just excessively narrow-minded or in actual fact not that bright – because you don’t have to apply many brain cells at all to realise the idea is utterly ludicrous.

 

For a personal example, the next person who comments to me about my lifestyle in relation to chronic illness is going to regret it instantaneously. Hell hath no fury like a small lady whose had enough of your nonsense.

 

If I want your opinion, I will ask for it. Otherwise, the likelihood is you don’t know nearly enough to make what you’re about to say remotely informed. So here’s a refreshing new idea for you: just shut up.

 

I know what my body can cope with given that it has Petunia in tow, and I also know that it can cope with far more now, three years on, than it could when I was diagnosed. I’m probably as fit as I’ve ever been right now – despite the fact I’m not exercising every day or attending a gym.

(Yes, but I've developed an unreasonable dislike for turning right, so sod you.)

 

“Never get anywhere with that attitude”, will I? Just watch me.

 

Something that commenters of this ilk seem to wilfully forget is that Fibromyalgia (or indeed any chronic illness) is not a bad habit. It’s not a singular health-impacting issue like for example drinking too much or not eating enough. It’s an illness, and it’s here to stay. Therefore, I can’t stop drinking, eat more, start running or take up any other one-step solutions and expect the problem to be solved.

 

You know, I might even brand that on to the next offending individual’s forehead. This is going to require a very small typeface indeed.  

 

Since I started with the fitness point, I may as well tell you what I get up to on this front. I do Pilates several times a week (I’ve a couple of DVD routines memorised now, which is nice), and I do basic things like squats and sit-ups just about every day. I’m planning to try a jive class and return to horse riding as mentioned previously. I also really need to crack the dancersize DVDs out again, but since we moved to the Upside Down house it’s a case of needing to rearrange the furniture each time I want to do so and that makes me lazy.

 

There, I said it, the diabolical L word. I’m inside right now but I can’t see any fire raining down. Lightning has yet to strike the building in response to my presumption, and the lynch mob have yet to appear to confirm what a terrible person I am.

 

If being lazy is indeed such a terrible thing, then after my three and a bit weeks of recovery from my operation I have definitely become firmly entrenched in the ranks of the hopeless. I did very little, mostly because I had a sewn-up hole in my head which protested if I did anything more. Joffrey was horrible, but the surgical site that was Not-Joffrey-Anymore certainly made up for it in being grumpy about any sort of activity at all. However, I also did very little because I could.

 

For a short time, it was glorious. I soon grew bored of it, but that short period of total “laziness” (otherwise called relaxation and recovery in this case) was very good for me. I wasn’t doing any of the usual things that were “good for me” (including eating properly, but neither would you if you could feel the stitches pull with every bite) but, oddly, it didn’t kill me. Rumours of my resulting demise have been greatly exaggerated.

 

I appreciate it’s the time of year when the lifestyle change idea is firmly set at fever pitch, but what you really should be thinking about is what *you* want to change for *you*. One size does not, despite rumours to the contrary, fit all. If you want to get fit, find an exercise you enjoy which suits you, no matter anybody else’s sneering or know-better attitude. You won’t continue with something unless you enjoy it, so that should be your foremost criteria of selection.

 

If you want to make changes to your lifestyle, be guided by what makes you feel good. If it isn’t yoga, for instance, then I promise you that’s absolutely fine. I realise I keep bashing yoga, but while I’m certainly not against retrieving my DVD from the mutant dust bunnies and giving it a try at some point, it’s probably the “fix-it” suggestion I grow most weary of hearing. 

 

In short, in fitness as with all things in life, do what suits you and makes you happy. Sod everyone else.

 

If the lifestyle fascists don’t like it, stick copies of The Healthy Dead everywhere in eye line. As Mr Erikson was good enough to warn them, they might indeed go blind.  

 

Settling down with more Tales of Bauchelain and Korbal Broach, and wishing you all many spoons xxx





My kingdom for a hoverboard

(backtothefuture.wikia.com)

As we start 2015 TRB is nearly two, and rather a lot has happened in the last year! 

Recently I've been writing about something other than Fibromyalgia and Interstitial Cystitis, which was a bit of a surprise and not something I ever expected. Sitting down with a purpose for this blog when I set it up, I never thought to have to deal with (and thereby write about) health concerns which didn't touch on either of those conditions. Fate, as Bernard Cornwell's Merlin was wont to say in The Warlord Chronicles, is inexorable. 

It's the first of January, and I'm now two weeks post-surgery. I'm healing up surprisingly quickly (mad skills, clearly) and I'm looking at the week after next to hopefully return to work. This gives me another week to get over the lingering tiredness - I'm still sleeping a lot and I'm easily wiped out, although improving every day. 

I've been off the painkillers for a whole three days now too! That isn't to say the scar isn't still aching and painful, but it's at a level where I feel able to cope with it by myself. I wasn't expecting to get here so quickly if I'm honest, but I'm certainly not complaining. 

It's traditional to make resolutions at the turn of the new year to focus on in the coming months. These are usually concerned with self-improvement in one fashion or another. 

I don't usually make them, but then my late November and December don't usually involve close brushes with "life's too short" either, so my outlook is somewhat different this year. For a week and a half before Christmas I (and everyone around me) thought I had cancer. Looking back now with a benign diagnosis, it's difficult to put into words what an earth shattering concept that is to wrap the brain around. There's nothing to prepare you, and no getting away from it. I was very lucky indeed that, thanks to Joffrey being highly unusual (unique in fact), this turned out to not be so.  

So, this year I'm going to try and do more - including hopefully a welcome return to a former love. 

When I was 17 I gave up horse riding after ten years to learn to drive - money simply wouldn't stretch to everything. Just as I was getting ready to look into going back to it I started with the Fibromyalgia symptoms and therefore wrote it off as a bad job. 

However, in the last few months since moving into the Upside Down house, my health has been significantly better (Joffrey notwithstanding). Despite it being winter, the usual joint pain and stiffness has been noticeably less limiting than in previous years. It would appear (touch wood) that things are improving. With that in mind, I think it's time to give horse riding another go. I've found a nearby centre which looks very promising and have arranged to go for a visit tomorrow to see the horses and talk about the set up they have. I'm picky on several fronts with riding schools, and won't go just anywhere for the sake of price or convenience. 

Yes, there's the risk of falling and jarring my aforementioned grumpy joints, but here's where my sort-of resolution comes in. I think it's time I was more willing to attempt things, rather than holding back and going "Oh, but x, y and z might happen!" and therefore giving up before I've begun. 

(It's winter in the UK. That's excuse enough for me for a picture of a stunning horse running through snow. Image from rgbmag.com)

It was only when I went nosying on the website of the centre I'm visiting that I realised just how much I missed it. I love horses, they're unique and wonderful animals and spending time with them is incredibly rewarding. Also, if you'll permit me to blow my own trumpet for a moment, I was pretty good. I'd been at it for years and I worked hard to improve. It was a genuine skill, and I miss the comfort of the knowledge that there was a challenging sport I excelled in. As much as I'll be rusty at first, I'd love to get back to that level.

So, watch this space!

Continuing in this vein, I've agreed to let a friend take me to jive classes to try it out. This is likely to be hilarious for everyone except me. I've always liked the idea of being able to dance, but have been too shy to give dance classes a go up to press as I never had the typical classes as a little girl and see myself as largely uncoordinated and clumsy. However, in the spirit of "life's too short" I shall put myself to the hazard and risk some giggling for the sake of trying something new. 

Something far more subtle seems to have already begun before the new year, but I hope to keep it going and see where it takes me. There's been something of a shift in the way I look at myself and my body. 

As much as I can declaim at length about the fact our society is far too concerned with the concepts of beauty and perfection, I'm just as prone as everyone else to succumb from time to time in terms of fretting about this blemish or that weight gain or loss. I know it's silly, but bad days occur nonetheless. 

Since the surgery though, I've really felt a profound shift into thinking about the amazing things my body can do. We'll call Joffrey and Petunia blips - we all have those, right? - but blips aside, my body is incredible. I had invasive facial surgery two weeks ago, and I'm already up and about, the scar is healing incredibly neatly, I'm regaining the weight lost through stress and inability to eat properly and the severely damaged nerve controlling the right side of my lower lip is showing small signs of recovery already.

Think about that for a moment. That nerve was rather battered and bruised during the operation as it was wrapped around the tumour, so had to be peeled away. In my surgeon's words it looked "extremely sorry for itself" when they'd finished. Full recovery was considered unlikely, but my team were hopeful for some improvement over the next few months. In two weeks, it's already taking baby steps towards getting better! I'm guilty of a little bias since it's my nerve, but that surely deserves full marks for effort? The swift healing process thus far really has left me taken aback at what a brilliant machine the human body is. 

To further highlight how silly the preoccupation with how things look is, I've had several negative reactions from people whilst out and about when I've tied my hair up to get it out of the way, and thus revealed the scar on my neck. Initially I was incensed with this, but given how well the scar is healing it just further illustrates the lack of perspective involved. Rather than it being considered something ugly or disfiguring, to me with the knowledge of just how quickly and tidily it has healed it's something really impressive. It's a battle scar, and I'm proud of it. I'm proud of what my body has achieved in such a short space of time. 

Also, I smiled almost normally for the first time today. It appears this tired the nerve out completely as it's not really responded much since, but if that isn't evidence of how hard my body is working I don't know what is. 

(Me. Nearly there!)

So, a very Happy New Year to you all. I hope 2015 brings plenty of health and happiness. 

Oh, the title? That's not a resolution, more of a request. 

It's 2015. Where's my hoverboard? 

Do you have any New Year's resolutions concerning your health or anything else? I'd love to hear about them!

Wishing you all many spoons xxx

The Retired Bridgeburner: The C Word

Hi all!

TRB will be a little quiet in coming months as I will be focusing on a new companion blog - The Retired Bridgeburner: The C Word.

As you may have gathered from the title, the lump documented in my last couple of posts has been diagnosed as cancerous. If you would like to follow my adventures in teaching cancer to behave itself, please head over to the new blog! I will continue to alert everyone via Facebook and Twitter when there are new posts.

I am hoping to not abandon TRB entirely, but as stated things will be a little quieter.

Wishing everyone 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