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

What is this new devilry?

.... no, it's not a new symptom. Although that would be an appropriate response with points for the reference.

It's also not a Balrog. 

I'm making my first ventures into vlogging! I'm still a bit rusty with Youtube (I still get irrationally angry with the linking to Google+ and how difficult that seems to make simple changes) but I thought it would be good to try something different with the blog. I will still write posts - in fact I think I'll still predominantly write rather than make videos. Each new video will get an accompanying new post on the blog so that everybody can see it if they aren't subscribed to the channel. 

There's nothing there just yet but the channel lives at the link below, and I'll pop it on to The Warrens tab as well. I'm hoping to get an introductory video and the first vlog up on there tomorrow. 

https://www.youtube.com/channel/UCfu2pJtp1aQkR7nqMtKL44A/feed

Happy watching!

Wishing you all many spoons xxx

P.S. I've made a rule for the channel - you only get to laugh at my lapsed-Northern accent and British mannerisms if you subscribe to the channel. No subscription, no laughing. I'll know*.

*may or may not be strictly true. 

Runereader

Read the lines that no one reads
They are written everywhere

Elvenking - Runereader

Something I’ve had numerous conversations about recently is the subject of treatments, and in fact the sheer range of weird and wonderful alternatives which are available and subscribed to alongside the traditional doctors route. Two main points came out of all this and I’d like to address them both. Firstly, the fact that something that works for one person might not work for another and that doesn’t invalidate anyone’s choice, and secondly bulldozing in with your opinions of other’s treatment is usually neither welcomed nor helpful.

Firstly let’s tackle the idea of treatment choice. It definitely seems to be a topic where everyone has an opinion whether they have any relevant experience or not. One of the areas you see this most in is alternative medicines and therapies and such things such as homeopathy. The central complaint is that it doesn’t work. In a strictly scientific sense that’s correct, but there’s a side to alternative treatments that I think a lot of people don’t consider and it is particularly relevant to chronic incurable illness.

The oft-heard refrain is that alternative therapies will not cure you, but I ask you to pause for a moment and consider the fact that in most chronic illness cases medical science cannot cure us either. Most current treatments are geared towards managing symptoms simply because we do not as yet have the understanding to tackle the illness itself at its source. In many situations this means medications with a roll-call of unpleasant side effects almost as long as the symptom list they are supposed to combat. It isn’t uncommon to hear people say that their medication makes them feel worse than their condition did in the first place.

That covers medication. The other traditional suggestions are basics such as exercise and “getting some fresh air”. Sound advice, except those things aren’t always possible for everyone. What people forget is that just because one person with Fibromyalgia (an example, but it applies across the board) is up and about in full time work doesn’t mean that another individual with the same condition can’t be bed-ridden.

However unpalatable it may be, we are in the realm of diseases that seriously reduce and even destroy sufferers’ quality of life. In my absolute worst flare-ups moving about in our flat is the most I can manage – imagine how much worse it is to not even be able to manage that on a day to day basis. In those scenarios, which sadly aren’t as uncommon as we would all like to hope, suggestions revolving around exercise and being outside are sheer folly.

In our hypothetical scenario then, we’ve exhausted the basics and the medication side of the story. Is it really such a bad thing that people in just such a situation turn to alternative therapies?

(A handy simplified guide from triaxl.com)

Whatever you may personally feel about any or all of them, in my view if it makes someone feel better then it can’t be wholly a bad thing. At the level where most options are unsuitable it really does boil down to the psychological and to comfort rather than successful treatment.

I’m not suggesting people can’t have negative opinions of any alternative therapies at all – from a personal perspective they aren’t something I can see myself trying. The point is that as always it’s rude and narrow-minded to make sweeping assumptions that people who choose to engage with those things are doing so rather than “doing something useful” for their health. You have absolutely no idea what they are or aren’t doing. How do you know they haven’t already exhausted every other option available to them and so are making the best of things in whatever way they can?

The real point of this is that when the only choice is to manage the symptoms with no hope of actual relief or cessation then what people decide to do to help themselves really is nobody else’s business.

This leads me nicely into my second point, which is when someone says they’ve started a new treatment or seen a new type of specialist and the other person chimes in with comments along the lines of “Well they’re rubbish. They don’t do X, Y and Z and you won’t get anywhere with them.”

With all due respect, who asked you? Unless I specifically ask “What do you think?” I am in no way inviting your opinion, and if I’m not inviting it then the chances are that’s because I don’t want it.

I can appreciate the use of specific examples of things to watch out for with a type of treatment, as shared experiences are often the only point of reference possible. However to flat out deny something will work with no further thought is beyond unhelpful. Frankly I’d say it’s more about you venting your spleen than it is about offering anything useful to the other person.

New treatments are a funny business and psychologically they will promote a mixture of hope and expectation paired with doubt and an attitude of “not this again”. Bad experiences will obviously taint anybody’s view, but that’s no reason to impose them onto another person who has just set foot on that particular road. It’s much more considerate to let them find out for themselves whether the treatment in question is for them as in their instance it could be helpful – just because it didn’t work for you doesn’t make that experience universal.

I know myself with treatments that take a long time and are not guaranteed to succeed it can be extremely easy to be swayed by others’ experiences – because you haven’t seen results yet, it’s very easy to allow that negative feedback in and therefore not engage fully with the options presented. Blasé comments of “Oh it’s rubbish” without any qualification could in fact jeopardise someone’s experience with a treatment that may have proved successful if they hadn’t been set against it by such thoughtlessness.

The key lesson? An individual’s treatment, however long or short the process and however many options they may have to attempt, is about them. It is their decision and it is in their hands. This means therefore that it’s not about you and your opinion, however over-inflated a view of its importance you may have.

(Take note)

Unless specifically asked for, you and your opinion are not invited to this particular party - and that’s something worth bearing in mind.

Has anybody else experienced this sort of thing? How did you go about dealing with it?

Wishing you all many spoons xxx

State of Siege

(Granted, perhaps not your traditional siege. Good old Heroes III.

Image from forum.blockland.us )

Something I’ve been saying right from the word go from this blog is that illness is not a competition (and this indeed applies to most things in life actually) and that everyone’s experiences are equally valid and important.

In other words, I’ve stood staunchly by the mantra of “There is no such thing as not ill enough.” I still stand there in fact.

Given this I was a little surprised to find recently that I’ve been questioning myself along the same lines without actually realising it.

I think the surfacing of such thoughts coincided with the blog’s first birthday, and came hand in hand with feelings that maybe I should be quiet, that my experience wasn’t really that typical of other sufferers of Fibromyalgia (and particularly not Interstitial Cystitis which I have a fairly mild case of) and that given that maybe they weren’t actually all that helpful.

I say with something of a raised eyebrow that I think I’ve possibly been tricked by how well I was over our long spring and summer last year. Between the patches of fatigue and aching it was easy to forget that my conditions existed because my immune system seems to respond rather joyously to dry heat and plenty of it. I even had short periods where I felt almost completely “normal” again. Despite the fact it’s now winter and I’m suffering again I think the build up of so many “better” days led me into something of a false sense of “do I actually belong anymore?”

The reality is that I have a full time job, I have hobbies I can still enjoy and I still have a social life. All those things do become messy as a result of Petunia’s moods but the fact remains that I’m holding down all of them despite being ill. I am in a lot of ways very lucky that I can still engage in a lot of things I love.

Last week was probably proof that Petunia’s ears have been burning, because the combination of a dose change in the amitriptyline medication and some bad family news (when Helen Mirren said in Calendar Girls that cancer was “a shitty, cheating, sly, conniving bloody disease” she was right on the money) meant she recently had something of a party. For Petunia, it was Christmas.

To cut a long and somewhat grim story short, I found myself once more surgically attached to three things – my sofa, my blanket and my wheat bag. A fourth unwanted attachment was to the cat, who doesn’t understand that I’m on the sofa because I can’t really get up and thinks jumping on my stomach every time I’ve almost dozed off is a good idea.

(The fact is that when you're this cute you'll get away with anything and everything.)

Sometimes I do wonder if she and Petunia talk.

So, my body continues to reprimand me for my foolishness. As with most times I have a dip, being out of the dip doesn’t mean an automatic return to normal. The restriction in how much I can exercise or indeed just walk about is becoming maddening and doesn’t seem to be changing quickly at all. I am reminded once again of what winter means for my body, something it was easy to forget and trivialise over the long summer.

I did manage to get out last weekend when I returned home and visit The Chestnut Centre, an otter and owl sanctuary near Chapel-en-le-Frith in the heart of the Peak District. It’s a lovely little place with a herd of Fallow and Sika deer, several different types of otter (including the wonderful Giant Otters) and many different types of owl. Otters are one of my favourite animals because they seem perpetually happy – unless they are sleeping, they are seemingly always at play, and it’s hard not to find their good cheer infectious.

I suppose the moral of this story is that not only should you never trivialise anyone else’s health or problems, but that you should also extend yourself that same courtesy. Illness will never be a competition, and all experiences are valid. My difficulties might not be anything like the same as Fibro sufferers who are disabled and unable to leave the house, but they are still there and just as legitimate. In the end negative thoughts and self doubt do nothing except exacerbate the problems by interfering with your thought process in how to deal with them.

When you live constantly in a state of siege with your own body and immune system, don’t give the other side any more ammunition.

Does anybody else ever feel a bit like this? What do you do to pick yourself up?

Wishing you all many spoons xxx

"Normal People Sick"

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

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

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

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

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

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

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

(Quite! Courtesy of the wonderful butyoudontlooksick.com)

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

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

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

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

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

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

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

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

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

Wishing you all many spoons xx