Sunday 27 July 2014

"Everyone is a genius...."

Everyone is a genius. 
But if you judge a fish on it's ability to climb a tree, it will live its whole life believing it is stupid.
- Often attributed (falsely) to Albert Einstein, source unknown.

This post could alternatively be titled "All the reasons I'm not stupid". 

This is going to be a highly personal post. I may waffle and I might occasionally swear. Consider yourselves warned. 

I've mentioned several times in past posts the cognitive effects of Fibromyalgia - the dysphasia, brain fog and struggle with short term memory and straight up brain-being-on-strike moments. I wrote at length somewhat painfully here about dysphasia in particular. I admitted it was something I have trouble dealing with.

It still is. My worry of being seen as stupid because of the way it affects my speech and thought processes continues to weigh on me far more heavily than it probably should do.

To qualify that I should probably provide some background. Despite earning A levels that would have secured me a place at most universities in the UK, I chose not to go. One major reason was financial, and another was personal. Given the same timing of circumstances all over again I doubt very much my decision would alter. I made my choice and I can't say that I regret it - I've forged my way in my chosen career path successfully regardless and I'm quite proud of that.

However, when my partner occasionally points out that I have something of a chip on my shoulder about it he isn't incorrect. I do. Since leaving college I've worked in a field mired in academic snobbery and spent a fair amount of time around people more qualified than me. Most are too sensible to bat an eyelid at this - some few have made a point of it though. I always describe it as being as if the other person's opinion of my intelligence has fallen through the floor on hearing the words "I didn't go to university". 

Said partner doesn't agree that this is as much of a problem as I perceive it to be, and there's a fair chance that's true. I suspect after years of examples there's a certain expectation of mine that I subconsciously overlay on situations. That doesn't mean to say it isn't a legitimate concern over something that does actually happen however. 

Everyone has restrictions they feel they work against in regard to the expectations of others. Mine is the feeling that with some people at least there's a stumbling block named "lack of a degree" in the way of my being accepted as a clever person - which I am, truth be told. I don't like to blow my own trumpet, but I am at the end of the day pretty sharp. I'm not the sort of smart that's going to make any paradigm-destroying discoveries or take humanity forward into the previously unknown, but I am the much humbler kind you might like to have along for a pub quiz.

(I used to always say I knew plenty of useless trivia. This was before I discovered that all that trivia is actually just the thing for quizzes. Also yay for Scrabble!)

So with all that in mind it possibly makes more sense that I'm still fighting with the cognitive aspects of my situation. False assumptions are hardly disproved by an inability to find the words you want or form a coherent sentence. 

What do I do about this? Well, if I'm honest outside of people I am very comfortable with I let myself fade into the background of conversations if I'm starting to feel overwhelmed with the dysphasia or confusion. I can laugh at it with those closest in my confidence, but it's horribly difficult for me to do so outside of them. An unnecessary element of personal pride? Probably. 

One of the ways this manifests is that I can't successfully debate. I have well formed opinions, but I can't think on my feet quickly enough usually unless it's a topic about which I'm particularly knowledgeable. It was never a skill I had much practice with and I tend to want to go away and think about all angles of something. So, I'm not much good in that kind of scenario and particularly not with all Petunia's quirks.

Happily I can say some things survive mostly unscathed. My recall for facts is still very quick and my general knowledge is very good (hence the quizzes). I can still learn quickly and my creative abilities are all still there. I'm still something of a Constant English Literature Student - my brain won't stop analysing what I read for patterns and layers even when I'd rather it shut up.

These are all skills individual to me and you can also argue that they are forms of intelligence. We all have them, and they're all different.

Now, to wrap up the waffle. Given my feelings about my own intelligence and certain barriers therewith, I view intelligence as a gift. Having my natural ability compromised has brought that lesson home all the harder.

It stands to reason then that my biggest hatred in this context is reserved for people who use their intelligence of whatever degree to make others around them feel bad or look stupid. 

I don't care the context, there's just no need for it. If you're the sort of person who needs to do that to justify your self worth then you need to take a heck of a long look at yourself. It's pathetic.

We've all encountered this sort of person. They have the answers to everything (or certainly think they do) and deliver it all in the sanctimonious manner of assumption that they are always correct. Worse still if they can point out when you're wrong or make you look silly as a result of an honest mistake then they'll never miss the chance to take that opportunity up. They might correct your grammar as you speak, or interrupt you constantly at the slightest slip up. Excuse me for being blunt, but it's what I like to call really sodding rude.

If we hold intellect and knowledge to be skills, then like any other skill they can be turned to positive and negative effects. There's nothing big or clever in turning your own skill into something to attack others with when it would be as easy to use it positively to help rather than hinder.

If someone is mistaken, instead of laughing at them you could teach them. One of the reasons I like listening to people talk about things they are passionate about is that they're the kind of people you learn from - they'll tell you as much or as little as you like from sheer enjoyment of the topic.

(Image from mediawebapps.com)

It's often said that what you have to say about others tells an onlooker more about you than it does the person you're speaking of. So it is in this example - using intelligence to make fun of others DEFINITELY illustrates more about you than the person you're attacking, and it doesn't speak well in the slightest. If you're about to laugh at someone's lack of knowledge, it might be worth remembering that none of us can know everything there is to know no matter how hard we might try. That person you're looking down your nose at would probably outstrip you on a different subject purely because all our interests are different.

I don't respect intelligence and skill for their own sake half as much as I do what people choose to do with them. I've listed above the various things I cannot do well or at all with my own brain. I don't necessarily like it, but everyone should self examine honestly sometimes.

What I can do however is write. I could write negative and hurtful things in elegant prose, or I put said elegance to better use and try to entertain and inform as best I can.

This probably tells you something about me, and that something is that I'm an idealist whose expectations are often too high.

Sigh. Somebody had to take the job...



Any thoughts on cognitive symptoms or how they make you feel?

Wishing you many spoons xxx

Thursday 24 July 2014

"Bite me"

(Magic - it can get a guy killed. Image from waterstones.com)

Apologies for the title. I’ve had my head buried in Jim Butcher’s The Dresden Files for the last couple of weeks and some of Harry’s Chicago-isms are starting to creep out when and where appropriate. This topic seemed to be just such an occasion.

I’m temping at the moment, and in sitting on a reception you meet and speak to all sorts of people. Most of them I have to say are really nice, with the odd slurring alcoholic thrown in to make the day interesting (I’m sadly not joking).

However, yesterday I ended up talking to someone who fell into neither category. Whilst waiting to be met by their solicitor they commented that I was looking very pale and tired. My lovely colleague explained I was having something of a flare up and I mumbled something about it being nothing a cup of tea on my break wouldn’t sort out (this is Hannah-ish for “A screaming headache and a sensitivity flare-up and in-the-name-of-all-that’s-holy-this-dress-hurts”). Said person responded with “Well don’t you, like, wear makeup when you look that rough? It’s not as if it would be impossible to hide it. Why walk around looking like that?”

Now I’ve encountered this sort of comment before but it still left me pretty much speechless for a few seconds this time around. It didn't really upset me so much as surprise me. Aside from the fact it’s incredibly rude, what in the world do you say to that? 

Apart from “No I don’t because I don’t have, like, a problem with the realities of existence”?

I do appreciate that I'm a person not overly concerned by appearances, and for some people it's a much more important thing. In the person's defence I honestly think they thought they were being helpful - suggesting if I made an effort to look better I might feel better too. I don't know, that might even work for some people. Mostly I'm just making the point that the individual won't be gracing the hit list - we just come at life quite differently. 

To explain what I look like when I’m having a flare up I’m even paler than usual, drawn and generally start showing circles under my eyes from not sleeping well. I get the slightly glassy-eyed look sometimes too and I move about as little as possible. The point is I’m not exactly a visage of hellfire and impending doom. You are not going to need therapy after you’ve seen me in flare-up mode. If you’re scared of pale complexions then I suggest you’ve never encountered the British before. Pale is sort of what we do, and I’m firmly in the camp of those who choose to do nothing about it.

There are two main points I want to make with this comment in mind. The first I’ve had lots of practice arguing my corner with, and it’s the fact that make-up is not primarily a tool for other people’s benefit.

Anybody who’s about to chime in with “Oh, but women only wear it because they’re insecure!” or “They’re wearing it for male attention” – well, the door’s over there. Please use it.

(Excuse the language, but basically that's a short and succinct version of what I'm getting at. Image from cosmosimisear.blogspot.com)

Wearing make-up so you look nice is not something anybody owes to anyone else around them. It’s a personal choice based on how you feel and how you want to look at that given moment. It has frankly absolutely nothing to do with anyone else at all. 

There’s an oft-overlooked amount of artistry in the use of make-up and in self expression in general (of which it can form a part). Some people don’t feel right unless they’re fully made up; others only use minimal make-up or none at all most of the time. I’m in the latter category mostly because it’s all too much faff unless I’m dressing up to go out. Either extreme and everything between are all absolutely fine. And still none of your business.

With all that in mind, it is certainly not something you owe to people so sensitive they can’t deal with someone looking a bit under the weather. It terrifies me to think that some people are so smothered in our mass media’s impossible beauty standards that they have trouble dealing with reality. When I’m at my healthiest I’m still laughably far off supermodel calibre as are the vast majority of people – so where does the idea that you’re supposed to cover up flaws for the benefit of those around you come from?

Secondly and far more importantly – forgive me, but I don’t see my health as something I should hide. I’m not ashamed of it. The idea that it is something to be ashamed of and kept under wraps runs a little too close to the idea that the chronically ill are somehow “broken” for my liking.

The way I see it, Petunia isn’t contagious so I’m no risk to anybody else. That’s one of the small mercies of most chronic invisible illnesses. I also didn’t come by Fibromyalgia and Interstitial Cystitis through any fault of my own, so they aren’t as a result of any action or inaction of mine. They are the only two reasons I could think of for there to be even a modicum of shame or a wish to hide the reality involved.

The fact that I’m a “spoony” is a part of me. It’s no different from the fact that I’m good with a pencil, that I’m rather fond of power metal or the fact at nearly 25 I still can’t negotiate high heels with any success.

I don’t really hide any of the rest of me, so why should I hide that? If I ever did want to if would be for me and only for me – it certainly wouldn’t be for the benefit of anyone else.

In closing, I can happily inform you all that nobody has run away from me so far today despite the fact that I’m still flaring.

However, it is only half past two.



Wishing you all many spoons xxx

Thursday 17 July 2014

Wrecking Ball

We know that come tomorrow
None of this will be here
So hold tight to your anger, hold tight to your anger
And don’t fall to your fear.

Bruce Springsteen – Wrecking Ball

I wrote not so long back about my new fitness regime and how it had begun to help with the various Fibromyalgia symptoms. I’ve been ill for too long to have expected lasting improvement – chronic means chronic, after all – but I would have liked things to have lasted a little longer than they did.

The frustrating thing is just how much better I became. I had more energy than usual and whilst the usual pain symptoms were still present I certainly felt the sense of well being that comes with being generally fitter. Though still ill and having rough days I was significantly more bright-eyed and bushy-tailed for want of a better phrase.

However, for the last couple of months I’ve barely been able to exercise at all. The workout DVDs are gathering a fine layer of dust in the living room and don’t look like moving soon. I have attempted to break the cycle a couple of times, but on both occasions ten minutes into the workout I was overcome with the feeling of needing to be violently sick. This didn’t happen but it would be idiotic to try and push past that sensation.

I’m not completely immobile – I’ve still been getting to work and pottering about in the evenings and at weekends but I miss the sense of structure and purpose. Taking up something like the 30 Day Shred again would be so ridiculous as to be laughable at the present time. I just don’t have the energy and attempting to fight this, as I’ve covered, does not lead to pleasant results.

I first noticed this oncoming phase when we went on holiday to Wiltshire at the end of June. We were blessed with sunny and hot weather but I think this further highlighted the problem – it was the sort of muggy heat that saps energy. Whilst we had a lovely time and went to some really lovely places – we’re both history nerds, and Wiltshire is the sort of old the dinosaurs had already forgotten about - I struggled with energy constantly. In hindsight I managed to do quite a lot considering, but it was never without the feeling of needing to collapse in the shade fairly regularly. Still, it was nice to get away and I’d go back to the area in a heartbeat.

(Not giving a monkey's at Barbury Castle - right up until my knees gave up a couple of hours later anyway.) 

So, the break did not improve things as you would usually expect it would. I’ve then been in the process of changing jobs again due to circumstances beyond my control and I suspect this has piled on the pressure on top of my already depleted resources. It never rains and all that.

So, at the moment I’m walking eight miles a day with a couple of train rides in between to get to work. I probably don’t need to illustrate the fact I’m back on the routine of come home in the evening, eat, sleep and repeat. The walk will have to do as my exercise for the foreseeable future because short of a miracle I will be summoning neither the energy nor the will to do anything further. For now, I give up.

Giving up. What an unpleasant phrase. However, there comes a time when you have to be sensible and recognise the difference between giving up because you can’t be bothered and conceding defeat because it’s the most sensible and healthy thing to do.

I am slowly coming round to the idea that I think my general health and fitness will work in cycles like this. For every phase of relative good fitness and energy levels I’ll have a corresponding low period. It’s undeniably frustrating because it means I can’t build fitness beyond a certain level before I have to let it slide again, but hopefully with perseverance it will creep up a little each time.

I really could moan about this, but on reflection I think the important thing to remember is that I could be without those good phases at all, and plenty of chronic illness patients are. Right now, it’s a bad patch and doesn’t look like letting up any time soon. Maybe Petunia didn’t like Stonehenge and Avebury very much (tasteless swine).

However, I had a phase of a couple of months where I was unusually well preceding this, and they’ve occurred infrequently before. That means with any luck it will reoccur again. I’m hopeful that once the situations of the job and the new house are sorted out I might settle down a little bit, but if I don’t then so be it. Petunia is as Petunia does after all.  

So in terms of my fitness, slow and steady will jolly well have to win the race, and as for those elusive "well" periods, they provide something (however tenuous) that can always be looked forward to. I'll take my small victories gratefully.


What do you do in your corresponding good/bad phases? How do you approach the fact that your health never stays the same?


Wishing you all many spoons xxx

Thursday 10 July 2014

"It's just a fashionable diet"

One of the most common complaints across the board of chronic illnesses is problems with food and digestion. Whether it is specific intolerances or more general bowel issues (diagnosed or not) it is a factor many patients have in common.

Another thing many patients have in common is facing the attitude from others of “It’s just a fad diet”, thereby implying that you are being awkward and difficult for ultimately silly reasons.  This is particularly in the case of problems categorised as intolerances. We all know allergies are deadly and I like to think that nobody would argue with another person who stated they couldn’t eat something because they could quite literally expire if they did so. I’d really like to think that everyone is decent enough to not do that.

This understandably casts "mere" intolerances in a poor light. They’re not deadly and therefore I think some people see this as an excuse to ignore them or at the very least not take them seriously. When taken in direct comparison with an allergy I can see why this is so.

However, let’s talk a little bit about food intolerances. I will warn you now this will not be particularly pretty.

First off it’s worth pointing out that you can have an intolerance to just about anything you ingest, and if it’s a minor ingredient hidden in a lot of foods then you’re going to have a tougher time weeding it out. Two of the most prevalent intolerances you would be likely to come across are to gluten and lactose, a sugar found in dairy products. Usually those are the first two candidates a doctor will tell you to exclude to try and narrow down the source of the problem.  

Symptoms of a food intolerance can include abdominal pain, acid reflux, bloating, constipation and/or diarrhoea, fatigue, headaches, nausea and skin problems amongst others and when acting in co-morbidity with another condition the list of potential problems grows exponentially.  

(Some more possible symptoms. Image from thebroadstreetpractice.com)

This year I’ve discovered that I am intolerant to gluten, and I found this by going gluten free for the better part of four months. Many of my digestive symptoms calmed down and some ceased to exist entirely during this gluten free period.  To give this some context I hadn’t had what you would consider a normal and healthy bowel movement in probably two years. Apologies for this being a little icky, but I think that sometimes in tip-toeing about and prettifying the point you lose the importance therein. Given this is a topic that is already not taken particularly seriously, avoiding the unpleasantness simply won’t do.

So, through exclusion I found that my problems were routed in intolerance to a certain foodstuff, and I set off into the brave new world sans bread.  The difference has been wonderful for me, and I would recommend if you’re going to try exclusion dieting that you need to eliminate the chosen food or drink  for a good few months – it took two months for me to start seeing any benefits and a further month for “normal” to happen.

Now it’s time for me to hold my hands up and admit my guilt. I don’t always behave with this. I don’t always feel up to the potential battle of wills which follows asserting this issue, so sometimes I just keep quiet and eat things that I probably shouldn’t. Other times it’s for a reason far simpler – every now and again a girl needs a slice of toast in her life, and as I don’t have an allergy I’m lucky enough to be able to indulge on occasion.

This obviously doesn’t help on the being taken seriously point, but the thing to remember is that this is my body. I know what’s going with it and I know if my symptoms have been low key enough to allow a bit of gluten-containing food or whether in fact they’ve been disagreeable and so it should be avoided. When last I looked, nobody else held the responsibility of policing my digestive system.

Rather like most of the symptoms of ongoing illnesses it’s something that can be fine one day and then troublesome the next. I understand that cooking around dietary restrictions of any kind makes things more difficult, and I'm always incredibly grateful when people do make this effort and particularly when cooking for many. That being said however I do very much resent the idea of “just being awkward”.  To prove my point, I have but one question:

Why would I deliberately make things awkward for myself?

Consider this: I like bread, pasta and plenty of other gluten containing foods. Gluten free versions of those products are available but they are invariably far more expensive than their ordinary counterparts, and often quite difficult to come by.

(I wasn't hungry before I started putting this post together.... Image from lavenderandlovage.com)

In illustrating this, I worked out recently that if I wanted to cook a completely gluten free meal of lasagne and an accompanying garlic bread, then assuming I went to my usual supermarket for the other ingredients I would need to visit two different additional supermarkets to find the gluten free pasta sheets (Tesco or Waitrose) and the garlic bread (only Asda so far). That’s a lot of messing about for just one meal, but sometimes life calls for lasagne and garlic bread in a way that even the stoutest of hearts cannot ignore.

My approach is that when I know an event is coming up where the insidious presence of gluten is likely to make itself felt then I’ll avoid it completely for a couple of weeks before and probably after to make sure things can get back on track as quickly as possible. I would say that I am currently working on about 90% gluten free the vast majority of the time and this keeps things ticking over quite nicely, and means most of the time my symptoms are mild enough that I can allow myself the occasional treat of a gluten product (who am I kidding with “product”? It’s cake.)

I believe we’re back at the same point I often make in that it’s not for anyone else to decide what is best for you, your body and your condition(s). If it’s something that affects someone’s quality of life then it should be taken seriously, not ignored on the basis of it not being something else. That’s the same logic that leads people to tell chronic illness patients “At least it’s not cancer!”

Next time you are faced with cooking around a dietary restriction (and I’m including the choices of being vegetarian and vegan in this too, as they seem to carry the “awkward” tag just as often) perhaps instead of bemoaning how this affects you, you should take a moment to consider that it isn’t actually about you at all.

To end on a happy note, for all my fellow cake fiends who are reading this and might also need to avoid gluten, I simply must recommend this dark chocolate fudge brownie recipe. I needed to double the oven time from what the recipe suggests but those brownies are simply god-like.

I kid you not, there will be angels composing odes about them as we speak. 


Has anybody else discovered food intolerances? Has this made your symptoms any better?


Wishing you all many spoons xxx

Wednesday 9 July 2014

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.