"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

A little something new...

The Retired Bridgeburner is now two years old! Excuse me while I have a bizarrely proud parent moment.

Last year my "something different" was the 30 Day Chronic Illness Challenge. Whilst I enjoyed doing that, it has isuses with repetition and towards the end it became difficult to answer similar questions differently enough to make it worth posting. One of the key problems was in some cases I'd already covered the answer in an earlier post - there are only so many questions you can ask about the experience of chronic illness after all. At some point you enter the murky boggy waters of "Where have we heard this before?"

So, I'm doing something quite different for this birthday. I'm going to answer more typical life questions and see if they reveal any links into the more usual realms of this blog. I'm going to start it off with this post myself with a question fresh in my mind from a recent discussion with a friend, but I'm also quite openly asking for questions from you readers. I'm really looking forward to your suggestions!

So, the first one.

Given complete freedom, name a person you would like to meet and why. 

I doubt this will surprise many of you, particularly if you've stuck around with TRB for a while. Also, I'm cheating. There are two. 

J. K. Rowling

(I really recommend this Oprah interview to other fans - they're actually both very interesting women and it's a nice thing to watch.)

On one level, I'd like to meet her because I think she'd be an interesting person to talk to, and I love stimulating conversation. I've watched the few TV programmes she's done (Who Do You Think You Are, A Year in the Life etc) and my impression from this is of an interesting and grounded woman with a great outlook on life. Who wouldn't want to meet someone like that?

On another though, it's the same reasoning as I have for the second person. I'm a book person, and books are my first great love. However, as for I suspect all people there are certain books which do important things for you, whether it be to teach you something profound about yourself or because they make you feel at home. The Harry Potter books were one of my examples. 

There is a documentary on the special edition of Deathly Hallows Part 2 called "The Women of Harry Potter", in which Rowling discusses the the various female characters and the reasoning behind their creation and some of their actions. The final third or so is about Hermione, and Rowling reveals Hermione came from a very personal place as she is an exaggeration of her at a similar age, She talks about the sort of little girl she was at that age and the parallels with the character, and the first time I watched it I burst into tears and wept rather quietly for the rest of the discussion. The only way I can describe it is as if she had reached through the television and grabbed me around the heart. I can honestly say she could have been talking about me. 

The Hermione Granger comparison is something I smile and laugh at rather fondly now (yes, I can still do a rather good impression of "Just because you have the emotional range of a teaspoon!" and the like), but at the time it was something I held rather closely. For a chronically bullied young teenager, I cannot express the power of the existence of a pop culture figure who is very similar to you. The Philosopher's Stone film was released in my first year of secondary school, which made up what cannot honestly be called the happiest five years of my life. I'm not suggesting anybody thought Hermione was "cool", but her existence meant I wasn't alone. It made a love of learning, a high level of ability and a strong sense of what was right over what was "cool" that little bit less abnormal, and such small victories are very, very important at that age. They kept me just shy of the brink of despair.

Discovering proof that she was based upon a real person just perfected the sense of what the character and the books gave me. Even as my taste moves on, my love of re-reading the series endures because of that nostlagic attachment. They're also an easy thing to return to when I'm not feeling well because they're undemanding entertainment. It serves as a wonderful pick me up, and makes me feel good. What more can you ask for? 

Steven Erikson

("And ignorant historians will write of us in the guise of knowledge.... They will compose a Book of the Fallen.")

Yup. Predictable. 

As mentioned, books that do something important for you resonate, and I doubt it's unusual to wish to meet the person responsible for them. 

Aside from the books however, Erikson's other writing is often thought-provoking and challenging, and to me that's a wonderful thing. I adore stimulating discourse. I love anything that makes you pause and consider things, perhaps more so than you may have done before. 

For a recent example, he hosted a rather brilliant discussion on Reddit about authorial intent. The good folks of Malazan Empire shared this, and it kept me riveted and deep in thought for quite some time. There is nothing so wonderful for me as challenging and intelligent discussion. 

Occasionally though, you come across an author and you feel an instant spirit of kinship with the way they look at the world. Ms Rowling says in the interview linked above that she thinks you find out what you believe from what you write sometimes. I think the same can be true of reading as well. Throughout the Malazan books I had more than one "light bulb" moment. As I've said before, I first read Malazan when I fell ill and was awaiting my own light bulb moment when a doctor would finally tell me what the heck my body was doing to me. 

Timing is sometimes key, and those books came along at a very formative time in my life rather like the Harry Potter books did. I was older and hopefully wiser, and as such the connection is different and deeper. It's my adult love as opposed to the nostalgic childhood one above. However, they're both examples of an escapism I firmly believe I need for my own mental health. It angers me to sheer fury when escapism of this nature is derided as childish and having no place in an adult world. I don't think it's in my nature to be so wholly cynical, so it's anathema to me that the wish to escape into something reassuring which makes you feel good has no valid place. If there were ever books to prove that fantasy is not for the childish, it would be these. 

On the meeting front, there's a particular death in one of the books which monumentally destroyed me, and I really want to tell him off for that, somehow at the same time as congratulating him on creating such a perfectly crushing moment. Such is the perfect dissonance of those books at times. 

So there you go. I'm not remotely interested in "celebrity" or being famous for being famous. The only known people I would be interested in meeting would be those who've done something interesting. I'm not a person who feels things in a shallow fashion, and emotion runs very deeply for me. In a way I suspect that's part of why I have such health problems relating to stress, why it never fails to cause flare ups. 

Doing the things that make you feel good, whatever they may be, really are one of the keys to overall health and well being. Partially it's why I picked these two people - it'd be nice to say thank you in person, wouldn't it?

Who would you meet given the chance? 

Wishing you all many spoons xxx

"Nothing but the rain"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Image from quotesandmovies.com)

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

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

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

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

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

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

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

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

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

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


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

Wishing you all many spoons xxx

"Once more unto the breach, dear friends"

I decided it was high time I posted a bit more about the recovery since my operation, and those pesky nerve exercises I have to do to combat the somewhat inevitable damage caused by the removal of the tumour. 

I used that quote for the title because.... well, I look flat out ridiculous and I'm letting the entire internet see. 

I have four exercises, two in particular target the nerve branch which was damaged during surgery, which is the one which controls the right side of my bottom lip. They're actually really simple things, so it's a bit surprising and perplexing when you first find you can't do them any more. 

Firstly, let's go for the pair which have never been a problem, and are done purely to keep the rest of the nerve working while the affected part tries to recover. So, raising my eyebrows and screwing my eyes shut. 

(Informative selfies are acceptable selfies.... sort of.)

Thankfully I can still register instantaneous surprise or disgust at will and people actually understand what my face is trying to do. I do all of these ten to twelve times a day (preferably when I'm on my own!) and have to do this for a few more months yet. 

So, the remaining two which touch on the damaged part of the nerve. 

Number one: make like a hamster!

(I'm bringing sexy back.... er...)

This one makes a lot of sense to me. Blow air into your cheeks, see if your bottom lip will stay closed and allow you to hold the air in. I can do this pretty successfully now and it's almost symmetrical. For the first couple of weeks I couldn't do this very well at all and the failed attempts were very amusing for witnesses. My other half still hasn't stopped doing what we might call "less than flattering" impressions of said failed attempts. I have promised suitable retribution once fully recovered. 

The final exercise is the one which still isn't working, and in reality I still don't know whether it will improve. The guideline for facial nerve damage is that however the nerve behaves at six months post-surgery is likely to be as good as it will get. We're about six weeks out at this point, so there's plenty of time for this to improve. 

So, this is my attempt at baring my teeth at the moment:

("What a cute grin you have!".... said nobody ever.)

What I can't show in a photo is that there are small hopeful signs with this. If I hold that absolutely delightful expression, my bottom lip does start to twitch to my right. That's really good - it means the nerve is trying to move, and even if it's not managing it yet that's proof of residual sensation and motor function, so all in all it's very positive. And yes, I'm now typing just as fast as possible (I'm a secretary, so that's pretty damned fast) to get away from that photo. I look either really concerned or as if my lower lip is very specifically drunk. 

This damaged nerve does manifest in a general sense as well. Towards the end of a day, and particularly at the end of a working week I can feel the lip dragging and moving sluggishly. I keep mistakenly assuming I sound like I'm slurring my words - it turns out I'm not, but to me it feels like the sluggish lower lip is in the way of me speaking. It's a very strange sensation. This is usually accompanied by the scar area starting to stiffen and my jaw to seize a little - it's all normal and really just symptomatic of the fact I'm perpetually very tired at present. 

At six weeks post-surgery, whilst I'm doing really well from a medical perspective I'm intensely frustrated. My only prior experience of an operation under anaesthetic was an appendectomy when I was 12. After that, I felt pretty much back to normal within three weeks. My hope that this was because I was some sort of mutant healing wizard have gone sadly unanswered.

It was because I was 12, and as a child you bouce back from things like that with extraordinary resilience. It seems the adult body is just too damned grumpy to accept upheaval with the same carefree aplomb. 

In my own head (a kingdom of vastly unrealistic expectations and an at best tenuous grip on medical reality) I've returned to full time work so I expect to feel better. Whilst I do feel better than I did, I'm still very easily tired and do very little with my evenings. I have received more than one "Why don't you just ... y'know.... sit still?" from my GP in the course of check-ups. I think the poor man has resigned himself to the fact the only way I'll sit totally still and stop finding things that "need doing" is if he employs someone to give me a smart knock on the skull whenever I start being too active. 

(If I ever here "Meep meep!" anywhere near me I'm going to run like hell...

Image from coastalcapitalwealth.com)

The reality, however much I like or dislike it, is that it will be another few months until I'm fully right again. Slow and steady wins the race, and it's sensible not to push it too much.

My solution? 

Oh, hi Dragon Age: Origins. You recommend sitting still whilst playing the game, do you? 

Let's do this!

Let it never be said I won't sacrifice dignity for the sake of providing my readers with information and a bit of a laugh...

Wishing you all many spoons xxx

Wasted Years

So, understand

Don't waste your time always searching for

Those wasted years.

Face up, make your stand,

And realise your living in the golden years.

Iron Maiden - Wasted Years

We could call this a belated resolution for 2015, but it's going to take some explaining. You, my readers, seem to enjoy it when I have a bit of a rant - watch this space. It's going to be a rough crossing!

We as people are no stranger to the fact that, like it or not, we're bombarding by advertising. In the field of health and beauty, that advertising does only one thing: it reinforces the narrow societal standard of what health and beauty look like. There is no variation, it looks one way and one way only. If you don't look that way, well, you don't have a place in this society, peasant scum!

In my early twenties I not only became vastly more aware of the existence of this standard, but also became far more cognizent of the fact it is a huge problem unlikely to be solved any time soon. I then set about putting a lot of effort into rejecting it.

Firstly, I'm 5'3". No amount of exercise or wishful thinking will make me supermodel-tall. I'm also British and typically British-woman-shaped. Even if I carried not even an ounce of spare on my legs and backside, they'd still be the largest part of my body. My frame is built  that way, and years of horse riding, skiing, swimming and plenty of other activities have created a fair amount of thigh muscle that won't shift in a hurry. Since I booked my first lesson in returning to horse riding this weekend, I'm not exactly doing anything to disencourage maintaining that muscle.

Why am I telling you all this? Because recently I've noticed I'm back-sliding on all that work on rejecting the tsandard and being happy with me for me. I don't think I can pinpoint when this started, but it's been creeping up on me for some time now. It's finally reached the point where I can't really pretend it isn't there any more.

When in a reasonable mood, I can easily say this has been compounded by inability to really exercise for a couple of months post-surgery, a tendency not to eat properly for those couple of months because I was eating what was comfortable and easy to chew, and spent a fair amount of time swinging between no appetite at all and wanting to do this:

(Image from thisfelicitouslife.wordpress.com. Original "X all the Y"meme from hyperboleandahalf)

In some part it stems from a time last year where I put a fair bit of weight on. Being me, it went to one place and one place only. In my no doubt slightly skewed view, my arse was well into the realms where it could consider applying to have its own solar system with a more than reasonable chance of success.

I appreciate to some people that would be no bad thing. I however have always been very bad at accpeting changes in my shape as they don't occur very often. So infrequently in fact that I have no idea what to do save fly into a state of mild panic.

Hey, if you're going to overreact you may as well commit.

Now, I've lost all that weight and I'm about back to normal. You'd assume everything would be fine, but it isn't. I'm definitely still in "not good enough" mode. Now there's nothing wrong with wanting to improve a particular area, but it's more than a little unhealthy when your expectations become inflated and unrealistic, which mine certainly are verging on.

In doing a quick bit of internet research for this post, it astounds me just how many aids there are in feeling unsatisfactory within easy reach of a few taps of a keyboard. Weight calculators which take no account of muscle to fat ratio or general frame before they brand you morbidly obese. "Shape" calculators which are frankly nothing short of insulting unless your measurements result in "hourglass" - which we all know is the only valid shape if you're a woman and want to take up space on the planet. I'm a person and not a piece of fruit, thank you very much (I get "pear" shaped as often as not).

I think the point I'm circling around here is really one of just how insidious this sort of thing is. There is absolutely no such thing as "perfect" but it's surprisingly easy to become overwhelmed with the expectation to achieve it nonetheless. And do you realise what we do each time we buy into the instantaneous flawless skin, effortless weight loss and general impossible "glow" we're sold?

Yes, that's right. We reinforce the standard, each and every time.

I'm not sure if the same can be said of men, but women in particular are expected and encouraged to compete with each other instead of hold one another up. It's often difficult to make an innocent compliment without it being analysed for agenda and hidden intent for this reason. Said expectation not only leads to a lot needless unhappiness, but also to the idea that only one shape or size - the opposite of said standard is "allowed" to feel inadequate. We struggle to accept that everyone has "fat" days, and most people have some part of their body they like less than another and would be willing to change. It's an entirely human thing, and despite what advertising may suggest we are indeed all human.

We would do well to realise that we're all in the same boat. We would do better still to recognise that with a not insignificant personal effort, we can choose to ignore it too.

So, this is my late resolution. I'm going to kick this unhealthy line of thought and work hard at self-acceptance instead. I've managed it before, so I suppose I get the added bonus of having proof it's possible. I'm sure plenty of us have wasted years and years in pointless self-flagellation on this topic.

How about we be a bit kinder to ourselves? You might not always appreciate it, but there's nobody else in the world looks exactly like you - no matter what size, shape or weight you might be right now, because those three things will be fluid throughout your life.

We should maybe remember that this in itself is something worth celebrating.

(One this note, a new motto: "I have a Bridgeburners top, therefore I am by default mind-blowingly fabulous"
That should work.)

Don't mind me, I'm going back to swearing at Ebay in my attempts to find a new dress for Valentine's Day. Why I do this to myself I'll never know - I HATE shopping.

Anybody have any thoughts on this topic? I'd love to hear them. Did you make any similar resolutions?

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