The Runcible Spoon Returns

It turns out that runcible spoons (AKA cake forks) are also perfect for fish’n'chips; fork prongs to stab the chips with, sharper edge to cut into the batter.  Who said that they were just for posh people?!

It SNOWED

This is what early Sunday morning looked like:

Can I remind the weather that it is actually mid-March and we’re rather expecting spring anytime now?

Back on go the thermals, which is slightly inconvenient because my legs have decided that they’re now ‘allergic’ to them.

The Nature of Nature

Does a badger badger?

Does a bat bat?

Does a bear bare?

Does a bug bug?

Does a carp carp?

Does a cow cow?

Does a crow crow?

Is a deer dear?

Does a dragon drag on?

Does a duck duck?

Is an eel ill?

Does a flea flee?

Does a fowl foul?

Does a fox fox?

Does a frog frog?

Does a hog hog?

Is a horse hoarse?

Does a lark lark?

What’s a lion lie on?

What’s a lynx’ links?

Does a moose mousse?

Does a pig pig?

What’s a robin robbin’?

Does a roe row?

Does a snake snake?

Does a squirrel squirrel?

Does a tapir taper?

Does a whale wail?

Does a wolf wolf?

Does a worm worm?

Convenient Food

It was a pretty amazing invention when you think about it, probably the best thing before and since sliced bread.  A simple container that took food transportation and preservation to a whole new level: the humble tin.

Tinned food is an asset; it’s ideal for emergencies and for those moments when the rest of the cupboard and fridge is bare.  Campers swear by the stuff but caravan-ers shake their head and mutter about towing weights.  You can have vegetables in and out of season, vegetables when you haven’t been to the shops all week.  You can have a meal in minutes.

Tin food.  Great stuff.  What a convenience.

But there’s a problem.

The usefulness of a tin is in its seal.

That seal stands between me and my food.

The tin opener and I are mutual enemies.

It hasn’t always been this way, although tin openers always have a bit of a temperamental reputation.  In the years of my independence, I’ve had to make sure that I have a soft-grip handled one for the moments that my paws get flimsy.  But recently it’s descended into all-out war.  It’s not pretty.

I latch the tin opener onto the lip.

This is usually the most successful moment of the entire operation.

It goes downhill from here on in.

The next trick is to turn the wheel.

I need at least two hands to turn the wheel.

Which rather begs the question of who is to hold the handle.

You need more than two hands to operate a tin opener.

Well, I do anyway.

So I jerk into an awkward dance between turning and holding.

You need to hold tight to get the teeth to bite in.

Guess what?

I can’t.

Not anymore.

Occasionally the teeth mush into the metal, I get hopeful.

Then everything grinds to a halt again.

There is a now a minute gap broken in the seal.

I can see the food.

I can smell the food.

I can touch the food.

(Well maybe with a pinkie finger if I really wanted to try and put my uncoordinated fingers anywhere near the chewed-up metal edges).

It’s at about this point that, having spent an inordinate amount of time in this messy, stressful, exhausting business, my attention is caught by some disaster-in-progress on the hob.

I am now divided.

Do I abandon the tin which is now either spewing or spitting liquid in my direction with each painful twist and jerk as I persuade, sweet-talk, curse and manipulate the opener or, left to its own devices, sits crookedly on the worktop, slightly more bashed than when it first left the cupboard, the tin opener jutting out, jammed in the rim at some impossible angle?

Well my reactions aren’t quite what they used to be.

And neither are my decision-making abilities.

The disaster-in-progress risks ceasing to be in-progress and becoming a too-late.

I swerve, mostly mentally, between one contest and the other.

I can’t cope!

I am overwhelmed.

I, the tin and the rest of the food need rescuing.  Urgently.

Having gone through this very exhausting and dangerous process several times in recent months, I have a new strategy: I don’t open tins.  That’s husband’s job now.

I admit defeat.

I give up.

Although not graciously.

But then there was a glimmer of hope.

Some food tins have ring pulls.

I can open ring pulls.

I am triumphant in my new found talent, a moment of victory and conquest.

I need two thumbs to lever up a ring pull.

This means that I need to clutch the tin, which suddenly has acquired the animate ability to wriggle, between my two wretchedly weak paws and still have enough length and stretch left to manipulate my thumbs under what transpires to be a stubborn, stiff piece of metal.

Sometimes my thumbs win the fight.

Sometimes I have to adopt something that proves that I am indeed a higher being: a tool.

I grab the nearest thing that seems vaguely appropriate, a dinner knife or a teaspoon.

The ring pull is stubborn but so am I.

And I am armed.

With a teaspoon.

The fight is won.

The ring pull is levered up, victory is achieved!

There is a minute gap broken in the seal.

I can see the food.

I can smell the food.

I can touch the food.

Like me, do you get a feeling of having been here before?

And that is as far as I can get.

The pride and jubilation of a battle won is quickly swept aside as the tin wins the war.  Again.

I am stubborn but I know when I am defeated.

I am defeated.

If I want to eat tonight, I will have to surrender; I will have to give the tin over to more capable hands.

Bitterness is not something that I easily succumb to.  Fortunately.  But there’s not much fun in being beaten by a tin of food.  And sometimes I’d just really like some baked beans.

Tinned food, hey?  What a convenience!

Some Fashion ‘Rules’ – Or are They Just Opinions?

Like so many things, and contrary to whatever the ‘experts’ may say, fashion is subjective.  Highly subjective.  Fashion might be dictated by a ‘them’ of mythological, cult status but really it should come down to our own taste and style.  Style cannot be achieved by the whims and fads of following every bandwagon.  At best you’ll like a poster girl (or guy) for this season’s look, at worst you’ll look like you really need some help getting dressed in the morning.

What fashion is also tending to neglect and ignore in this day and age is that there are times and places.  Casual might be comfy, it might be relaxed, it might be the best expression of our individuality but should it really be allowed to roam free across board meetings and weddings?  You might love your pyjamas and duvet look but is this something you wear in town never mind the supermarket?  (For some reason, supermarkets seem to have surprisingly strict dress codes.  You are not allowed to wear pyjamas (our mini-supermarket/corner shop never got that memo, fortunately for harried mothers dashing out to get milk before the school run) and you must never enter their hallowed halls in bare feet.  Bare feet are germy and dirty.  Shoes aren’t).

As we live in a society that places increased emphasis on individuality (as long as you look like everyone else), is it really fair or right that ‘other people’ dictate what we do or don’t wear?  Perhaps we actually need that more today than at any other time.  Years ago, there were pretty clear-cut standards and definitions of what one wore where and when.  Women, for example, didn’t, couldn’t and wouldn’t go out without hat and gloves.  Men wore shirt and collar.  But with increasing options and diversity, perhaps we do need someone somewhere to say, well hang on a moment, this is what you should be wearing in this workplace or to this event.  Knowing what to wear when and where is no longer inherent; we tread fine lines and debate endless rhetoric as to whether this top or these trousers are casual-casual, just casual or smart enough.

Whilst there are some clothes that we would ‘never be seen dead in’ (such is the fervour that fashion inspires), we sometimes are forced to admit that they look quite good on someone else.  Therein lies the problem.  Very few people look good in everything.  You can slavishly follow the fashions but if you want to look ‘good’, then you need to find your own style, what works for you, your body and your lifestyle and stick to it.  And it is always worth remembering what we said that we’d ‘never be seen dead in’ because when it comes back on the bandwagon, are we succumbing?

Fashion goes further than dictating what clothes we put on our bodies.  Fashion, perhaps more now than at any other period of time, dictates what our bodies should look like.  Fashion, I blame its narrow-minded designers, neither appreciates nor accepts that we are all built differently.  Very differently.  Completely differently.  When fashion is designed for only one body shape then some of us, if not most of us, are going to suffer.  If we are not ambulating 2D coat hangers with stick insect-style limbs then really is there any point in trying to be fashionable?  We’re not going to fit in those clothes even if we shamefacedly go up half a dozen sizes.  And our bodies will never cooperatively conform to that shape.  Irrespective of diets, exercise regimes, magic underwear or shoe-horns.

Here are some of my opinions and observations:

• If you are going to wear trousers then make sure that they actually reach to your feet.  Otherwise make it clear that you’re wearing cropped trousers.
• Personally, I don’t think garish or heavily patterned socks look good when you wear too short trousers or ballet pumps or dollies.  If you want to recreate the Pippi Longstocking look then do so deliberately.
• If you insist on wearing your trousers’ waist halfway down your legs, I reserve the right to offer you a belt.
• If you are wearing trousers that low, please do not wear holey underwear.
• Buying a shoe size too small does not make your feet cuter or more lady-like.
• Don’t even dare to suggest that a woman can only have ‘good’ or ‘correct’ poise and posture when wearing high heels, I will just look at you like that.
• If you can’t walk in those shoes, then really what’s the point?
• They might be calling it ‘cleavage’ so it sounds attractive but that just makes me think of things like hatchets and axes.  Not pretty.  If your toes show in closed shoes then they really aren’t a good fit.  Anything that should be in a containment facility should stay there.
• This also goes for your bra.  Whilst you may think it’s attractive to have everything hitched up to eye level, it isn’t.  Nor should they be escaping over the top of any containment facility.
• Just because that was the size bra that you bought when you were fifteen, it does not mean to say that you will still be that same size twenty years later and after four diets, six weight gains and two children.  For your sake, and everyone else’s, find one that fits.
• There is a key prefix involved when it comes to underwear.  You are meant to wear it under your clothes.  You don’t have to prove that you are wearing some and no, no one actually wants to see it.
• Your makeup should never be the first thing people see about your face.  Especially not from across a room.
• If you really want to wear leggings then please don’t wear pairs that are saggy, see-through, laddered or holed.  It’s not pleasant.
• Leggings are not guaranteed to be the big girl’s best friend.  Or any other clingy clothes.
• If your skirt is shorter than your coat then expect odd looks.  People will question whether you remembered to actually put one on.
• Your skirt should never be shorter than it is wide.  And if you have the good fortunate to have ridiculously long legs, be aware that skirts will always look shorter on you, even if they come to the knee.
• If you have to spend the day uncomfortably holding the edges of your skirt down then it really is too short.
• Just because the weather has got unusually warm does not mean to say you can take your t-shirt off when you’re out and about.  You’re never as good-looking as you think you are.  And sunburn isn’t particularly attractive looking either.
• If you’re not at the beach or by a pool then why are you wearing swimwear?
• Swimwear only ever looks good on everyone else.  (With notable exceptions, admittedly).  Get used to it.
• Wearing shiny or noisily patterned fabrics does not make you look skinnier.  Normally the opposite.  And you’re giving everyone a headache.
• Wearing a tracksuit doesn’t necessarily make you look sporty.  In fact, it often gives out the opposite message.
• If you don’t know what brands are cool then don’t bother wearing the wrong ones.  It still doesn’t make you cool.
• Decide for yourself whether not wearing a petticoat, showing your arms, going out without a vest in March etc are really crimes.
• However, if you want to wear tights and a synthetic skirt, please wear a petticoat.  It’s for your safety, static bites.  And the clinging, scrunched up skirt look is never pleasant.
• Very few women can wear ankle boots with short skirts, most shouldn’t.
• If you have spent the last twenty years ruing a particular look or hairstyle, don’t re-adopt it the moment it becomes ‘fashionable’ again.  It still won’t look good.
• Socks are socks.  They don’t have to match.  But you will have to take your shoes off if you wear a holey pair.
• I might be old-fashioned but you really can’t carry a navy blue handbag with a black dress whilst wearing brown shoes.  The same applies for suits.
• Never buy a t-shirt with a slogan in a foreign language, not without the aid of a (trusted) translator or a dictionary.  You can easily look like an idiot advertising your idiocy.
• Decide if you really need to serve as a human billboard for a brand.
• You don’t messages across your chest or backside for people to get a pretty good idea of who you are.
• Personally I don’t get t-shirts that claim their superior laundry abilities; however I have been advised that the brand apparently started out in outerwear so their claim makes some sense.
• Spending more on a t-shirt does not guarantee that the worker has been paid more.  Usually the only thing guaranteed is that someone is making more profit.
• You may think that it isn’t cool to wear a coat but trust me, you’ll look even more uncool as a hypothermic, drowned rat.
• Corsets are meant to be passé for good reason so don’t wear anything that’s torture.

My Two Proofs

‘Complimentary’ or ‘alternative’ (the term you choose to use probably reflects your views) healthcare seems to be a great divider of opinion in these modern ages.  The rigid disciples of Science believe only in its apparently concrete, modern and proven theories dismissing other views as quackery suitable only for misguided ignoramuses stuck in the Dark Ages of Folklore.  They forget that folklore is the very foundation of their own pride and joy, its original springboard into modern terminology and that in fact Science and Folklore are still tightly entwined bedfellows.  Aspirin anyone?

Personally I find modern Medicine, much like all branches of Science, a little rigid in its understanding and a little too keen on pigeonholing.  I’d rather treat something holistically than to focus on one symptom and dose it up on chemicals.  Medicine prides itself on the physical, only accepting the tangible proofs of illness.  It struggles to explain and cope with conditions like ME.  And what is pain?  Physical, psychological, psychosomatic?  All or none?  I sometimes find Medicine too black and white.

I’ve used various treatments and systems of medicine before for various ailments, I respond better to them with no side effects which to me is a clear advantage.  There’s less risk of overdosing too, comforting.  One of the things that I regularly return to is homoeopathy, a quackery that some bristle up with a vengeance at the idea of.  Each to their own, I’ll leave you to your opinion and decision so leave me to mine likewise.

They often claim that any positive effect homoeopathy may accidentally have on a patient is simply a placebo response.  If you give a human any pill-like object to take, he will magically believe himself better.  I don’t know what this says about human intelligence.

I have two proofs, conclusive to my way of thinking at least, that homoeopathy works for real and I offer them up to you now:

1. My husband.  He loathes all medicine with a passion whatever its origin, suffering is a noble art and the only way to deal with illness.  He won’t take painkillers for a headache because it’ll ‘go away eventually’.  In the meantime he can’t do anything and is a total pain to live with.  I dose him appropriately regardless, husbands don’t know best in this instance, including with homeoepathic remedies which just like ‘standard’ or ‘orthodox’ or ‘Western’ treatments will do nothing. and never have done  The thing I love most about homeopathy is the symptom pictures that each remedy indicates, more than just your fever but the time it gets worse and often small details about your personality.  My husband’s go-to remedy when he has a lurgi has the following description included: ‘a bear with a ‘sore head’ who is irritable and resentful of being questioned or fussed over’.  Hmm.  That’s him to a T.  And do you know what?  That remedy works every time.  Even though he still refuses to believe so.  Placebo effect?  Not if he could help it.
2. The family dog.  The dog has even less intelligence than the husband and is normally completely oblivious to having taken a pill (I drop them in his water bowl to dissolve).  So I don’t think placebo effect is therefore possible there either.  In the past, when I was a child, we had a rescue dog who we treated successfully for separation anxiety and the current incumbent was dosed for another psychological condition for which modern Medicine offers no treatment or cure for, especially not for four-legged patients, grieving.

And there are my proofs.  If it works on the stubborn and the ignorant, it has to have worked.  In any case, life was better for all concerned after dosing which is the essence of Medicine anyway.

The Oh-So-Long Symptom List

Neurological Signs and Symptoms:

• Inconsistent central nervous system function
• Vertigo and disequilibrium, for example a sensation that your surroundings (or you) are spinning wildly and vertigo may also be expressed in a milder form as an inability to watch TV or to read (or knit!)
• Temperature dysregulation
• Poor tolerance for hot or cold environments
• Hyperacusis (sensitivity to noise)
• Photophobia (pain/relapse on exposure to light)
• Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes
• Visual disturbances such as blurred vision, blacked-out vision and wavy visual field
• ‘Sensory storms‘ (while conscious)
• Fragmented sleep
• Difficulty initiating sleep
• Lack of deep-stage sleep
• Disrupted, chaotic or reversed circadian rhythms
• Extreme intolerance to vibration or movement
• Sudden loud noises can also cause a startle response (flushing and a rapid heartbeat)
• Tinnitus
• Simple partial seizures which do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensations; somatosensory seizures, autonomic seizures, focal motor seizures, auditory seizures, visual seizures
• Complex partial seizures: episodic dysphasia/dysphagia (incomprehension of speech and inability to speak), olfactory hallucinations (smelling curry, for example, wherever I am)
• Overload phenomena
• Unrefreshing sleep (waking up feeling worse than when you went to bed)
• Hypersomnia
• Dysania (doesn’t that sound like a yoghurt or some branded water?)
• Sluggish focus (visually), an inability to focus or accommodation difficulty (difficulty switching from one focus to another)
• Vision reversals
• Vision clouding
• Intolerance of extremes of hot and cold weather
• Changes in barometric pressure can cause night sweats and spontaneous sweating during the day
• Insomnia, migraines, irritability or generally ‘feeling off’ a day or two before the weather changes
• Changes in temperature or humidity can cause stiffness or increased aching or pain in the muscles

Vascular and Cardiovascular Signs and Symptoms:

• Chest pressure, heart pain and a fluttering/straining heart
• Postural Orthostatic Tachycardia Syndrome
• Feet burning painfully and turning blue/purple on standing (Raynaud’s phenomenon)
• Pain/discomfort/poor digestion following meals
• An exacerbation of symptoms on orthostatic challenge (maintaining an upright posture) beyond certain limits. (Lying down markedly improves symptoms for M.E. patients).
• Orthostatic light-headedness or  blackouts
• Oedema (swelling of the hands and feet)
• Extreme pallor (usually just before or during a relapse)
• It has never been investigated whether I suffer with more specific problems to do with low blood pressure, high heart rate, sleep bradycardia, arrhythmias or reduced circulating blood volume

Cognitive Signs and Symptoms:

 

• Word-finding difficulty, incorrect word selection (paraphasia) is common, such as using the wrong word from the right category or using a word that sounds similar to the correct word but has a different meaning
• Commonly used words become hard to retrieve
• ‘Scanning’ or disjointed speech
• Speech reversals
• Difficulty comprehending speech or delayed speech comprehension
• Handwriting changes (this waxes and wanes with the severity of illness)
• Difficulty writing or comprehending text
• Difficulty with even basic mathematics (dyscalculia) (although somewhat difficult to prove in someone who has trouble counting higher than thirty!), an inability or difficulty to do simple additions and other calculations, to count money, add up columns etc
• Difficulty with multi-tasking and simultaneous processing
• Impairment of concentration, maintaining a reasonable level of concentration on a task for even a short period of time may become extremely difficult and sometimes impossible, there is a need for mental micro-rests
• Difficulty with spatial perception, for example a loss of co-ordination or clumsiness, difficulty in judging distance, placement and relative velocity (caused by proprioception dysfunctions, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition)
• Extension or quick rotation of the neck can cause dizziness (also due to proprioception dysfunctions)
• Difficulty with sequencing, an inability to look up words in a dictionary, organise files or look up phone numbers
• Difficulty  with memory including: making and consolidating new memories, recalling formed memories, and with immediate and delayed visual and verbal recall (e.g. facial agnosia); short term memory problems may lead to forgetting what they are doing to such a severity that I am unable to finish a sentence
• Inability to learn new tasks and forgetting how to perform routine tasks
• May need extra sensory cues to complete tasks, for example having the light on when before the task could be done by touch alone, or can understand a conversation face-to-face but not over the phone
• Cognitive slowing
• Difficulty with visual and aural comprehension
• Difficulty following oral or written directions
• Trouble distinguishing figure from ground and speech comprehension difficulties.
• Word, letter and short term ordering problems, for example; transposition – reversal of letters or numbers, words or sentences when speaking or writing (pseudodyslexia)
• Agraphia, inability to locate the words for writing
• Problems with reading (alexia) or word blindness; I can still read but what is read is not comprehended and cannot be compared with known information already stored
• Despite actively listening, the information simply does not register at all or must be repeated several times before it registers
• In speaking, my syntax is askew often
• Speech comprehension is delayed which can result in long pauses, interruptions, mistiming of responses and apparent non sequiturs
• Difficulty or confusion with following timetables or keeping scheduled appointments
• Loss of the ability to block out extraneous and unwanted information and noise
• Loss of the ability to distinguish noise from required information and tend to shut down all intake after minimal prolongation of the information signal
• An exaggerated response to even small amounts of additional input or stimulus (light, noise, movement, vibration) is common, causing incoming messages to become scrambled or blurred resulting in distorted signals and odd sensations (ie. low level seizure activity)
• Even very low levels of light or noise etc. can also cause an exacerbation of other symptoms, or of the severity of the illness generally
• Altered time perception (losing time), feeling ‘spaced out’ or ‘cloudy’ or not quite real somehow
• Abstract reasoning dysfunction; difficulty organising, integrating, and evaluating information to form conclusions or make decisions
• The brain becomes unable to maintain wakefulness; there can be a difficulty in maintaining full consciousness for more than a few seconds, minutes, or half-hour periods at a time
• Volitional problems: difficulty starting or stopping tasks, or switching from one task to another (a neurological dysfunction where the body does not respond appropriately, or quickly, or without difficulty, to the minds commands)
• Agitated exhaustion (neurological in origin)
• Emotional symptoms include: mood swings (emotional lability) – crying easily etc. or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt, there can be an emotional flattening or situations may be erroneously interpreted as novel (due to prefrontal cortex dysfunction)
• Emotional symptoms in M.E. tend to be linked to exacerbations in physical symptoms, there are often not environmental triggers
• A worsening of symptoms (including cognitive function) with cognitive exertion beyond a certain level

 

There is often a marked loss (20 points on average) in verbal and performance IQ (fortunately I never have had to sit an IQ test)

Greater difficulty with auditory comprehension than visual is common (ie, with these ears of mine, I’m stuffed)

Digestive Signs and Symptoms:

• Oesophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back) or oesophageal reflux (heartburn)
• Difficulty swallowing (or an inability to swallow)
• Great thirst or increased appetite
• Food cravings or lack of appetite
• Inability to tolerate much fat in the diet (gallbladder problems)
• Changes in taste and smell
• An increased sense of smell or bizarre smells (for example, the week I could smell curry everywhere, it was very odd)
• Strange taste in mouth (bitter, metallic)
• Multiple new food allergies and intolerances (I can’t eat garlic anymore.  And cucumber and watermelon are problematic).
• Bloating, tenderness, discomfort
• Abdominal pain
• Nausea
• Indigestion
• Constipation
• Alcohol intolerance is common (this also waxes and wanes but can be frustratingly unpredictable)
• Feeling ‘poisoned’ and very ill

Endocrine and Neuroendocrine Signs and Symptoms:

• Loss of thermostatic stability – suddenly feeling cold in warm weather, recurrent feelings of feverishness or chills or hot flashes particularly involving the upper body
• Low-grade fever may occur following exertion
• Temperature fluctuation throughout the day (unproven abnormal temperature but the sensation is there)
• Cold hands and feet, sometimes on only one side
• Sweating episodes (profuse sweating, sometimes even when cold)
• Swelling of the extremities
• Loss of adaptability and worsening of symptoms with stress due to endocrine dysfunctions
• Hypoglycaemia or hypoglycaemia-like symptoms (problems with blood sugar regulation/low blood sugar)

Muscular, Pain, Exertion and Physical Activity Signs and Symptoms

• An exacerbation of symptoms with physical activity beyond a person’s individual limits, and a worsening of the illness generally (etc.) with continued overexertion
• Severe muscle weakness (paresis) or paralysis
• Muscles will often function normally to start with, but pain and weakness (or paralysis) develop after short periods of use and then take 3, 4 or 5 days (or longer) to resolve (normal muscle recovery is around 200 minutes
• Problems arise from sustained muscle use – it is a pathologically slow or impaired recovery of muscle after exercise (metabolism of the muscles), therefore I may be easily able (for short periods) to lift something moderately heavy one or two times, but be unable to lift something very light many times
• Muscle weakness/paralysis affects all muscles/organs, including the heart, eyes and brain
• Dyspnoea with overexertion
• Erratic breathing pattern
• Loss of the natural antidepressant effect of exercise
• Inappropriate signs of immune system activation can be brought on by overexertion (i.e. flu-like symptoms)
• Persistent coughing and wheezing
• Worsening of symptoms generally caused by a hypersensitivity to light, sound, vibration, movement, temperature, odours and/or mixed sensory modalities
• Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.)
• Muscle pain, twitching and uncontrollable spasms
• Difficulty breathing and air-hunger
• Difficulty swallowing or chewing
• Paraesthesia
• Polyneuropathy
• Myoclonus
• Onset of a new type of headaches, severe or pattern of headaches is common, often associated with neck rigidity and occipital pain (pain/pressure felt at the base of the skull, the top of the neck) and/or retro-orbital eye pain (pain behind the eyes) and also sometimes pain behind the ears (or one ear).
• Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest)
• Hypoglycaemia headaches (generalised prickly ache over the top of the head) (I had wondered what the nice prickly headache thing was about)
• Sharp transient ear pain
• Deep itching in the ears (I just learnt that could be a symptom today!)
• Significant (can be extremely severe in M.E) myalgia (pain) in joints is often widespread, especially knees, hips and fingers; sharp, shooting, burning or aching pain
• Gelling (stiffness) in the joints that develops after holding a position for awhile
• Aching in the joints
• Gait abnormalities and a difficulty with tandem gait
• Inability to form facial expressions leading to a ‘slack’ facial appearance, almost Parkinsonian
• Spasms of the hands and feet which can lead to ‘clawed’ deformities
• Spasms in the neck which cause the head to twist to one side
• Some cogwheel and leadpipe rigidity
• Slight hesitation in movement
• Severe spike-like pain, usually in the main muscle mass in the leg; extensors or flexors,  commonly described as feeling as though a nail or a knife had been stuck into the area
• Formication (another ‘new’ one learnt today whilst doing that, whilst many languages use ‘ants’ to describe pins and needles, I am often very aware of a different sensation to pins and needles, it does feel like being bitten or stung by ants, a burning, itching and crawling sensation)
• Allodynia – for example, the weight of the bedcovers becomes ridiculously heavy and painful
• Problems with nails such as vertical ridges, bluish nail bed, brittleness
• Marked weight gain or loss (often independent of dietary changes) (particularly as a teenager)

 

Immunological Signs and Symptoms:

• Lymphadenopathy
• Recurrent flu-like symptoms (general malaise, fever and chills, sweats, cough, night sweats, low grade fever, sore throat, feeling hot often and low body temperature)
• Very severe throat pain, scratchiness and tenderness which often worsens with exercise, exertion or before relapses
• Increased or decreased susceptibility to secondary infections, a tendency to catch either every virus going around or to ‘never catch anything’ depending on whether the immune system is under- or over-active (which changes dependant on which stage of the illness the person is in)
• Infections also last longer, can be more severe and occur more frequently and may also cause relapses either concurrently or just after the initial infection
• Reactions to chemical smells
• Chemical sensitivities may occur to indoor and outdoor chemical air contaminants; can produce allergic reactions although not all chemical sensitivities are IgE mediated, may also cause an exacerbation of other symptoms
• Worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to many varieties of food (and food additives) and to airborne allergens
• Hair loss and poor quality regrowth
• Skin rashes
• Dry and peeling skin
• Spontaneous bruising (aha!  I have long been plagued by a Murphy’s Law state of bruising, I rarely seem to come up in bruises when I bash myself but I find random bruises that have no apparent cause all the time)
• Flushing of face (my face is very red most of the time actually, I can’t use blusher anymore)
• Finger pads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (my hands often look like I’ve spent far too much time in a bathtub)

Oral Signs and Symptoms:

• Dental decay and periodontal disease (gum disease) are much more common than in the general population
• Frequent canker sores (I thought that this was something to do with horses, but hey!)
• Temperature sensitivity in the teeth
• Pain in the teeth
• Tooth-hypersensitivity pain

CO-MORBID ENTITIES: 

• Secondary or reactive depression (as with any other debilitating chronic illness) (actually primary depression, it commenced before ME but they don’t get on well)
• Irritable Bowel Syndrome
• Raynaud’s phenomenon (poor circulation) (symptoms of but never been investigated)
• Carpal tunnel syndrome (weakness, pain, and disturbances of sensation in the hand) (possible as have symptoms of but never been investigated)

It sucks, doesn’t it?

(Information has been mostly drawn from the highly information Hummingbird website, many thanks to its authors).

That Mongrel-Beast Actually Causes Quite a Few Problems

My usual technique for dealing with illness is to ignore it.  Well, it might just go away.  And I’m used to blaming the psychological for a lot of my problems, for example, I say, ‘I’m lazy’ or ‘I can’t be bothered’.  But I’m growing in awareness, both of my main physical condition (ME) and of myself.  I know now that I’m not lazy but I’m still reluctant to take on board the fact that perhaps that mongrel-beast does actually cause me quite a few difficulties.  I suppose, perhaps, it partly goes back to that very screwy idea of ‘deserving to be ill‘.  I just tell myself, and anyone else, that ‘I’m just making a fuss, it’s nothing really’.  And that’s how I see it and how I live my life.

But the problems don’t just go away if you try to ignore them.  They’re still there.  Misunderstood, mislabelled, mismanaged.  It’s not a good recipe for success.  I have to face up to the fact that the mongrel-beast is ever present, that all those queer symptoms that irritate  frustrate and confuse are probably its fault.  Others, unfortunately, have just become my ‘normal’, I’m so used to feeling one way or another, one thing or another, that I scarcely appreciate that most people don’t actually feel that way, or ‘thing’.

I don’t like ignorance.   I do agree that knowledge can be power.  It can inform and educate.  And that’s what is desperately needed in these neurological conditions and ‘invisible’ illnesses such as ME.  It would be hypocritical of me to continue denying its existence in my life.  I cannot preach the need for awareness when I am steadfastly refusing to be aware.

Awareness does have its downsides, of course.  It can overwhelming,  frightening.  It’s almost like that moment when you first receive a diagnosis (not that ever happened in my case), the ground becomes unsteady and you find yourself confronted with a whole new reality, future, lifestyle … everything.   This condition is all-pervasive.  Being an ostrich doesn’t change that.

I preach also for tolerance, and I don’t necessarily use the word in the modern sense of ‘permissive’, for me, it’s a generosity of spirit and understanding and appreciation towards your fellow man.  How can I expect others to be tolerant when I am so hard on myself?  Again, it would be totally hypocritical.  I don’t do hypocritical.

Something has to change.  I have to change.

I have to face up to reality, to be tolerant to myself, to offer myself the understanding and appreciation that I so willingly give others.  I don’t make excuses as if they have no responsibility for their actions but I do understand and appreciate that there are, at times, extenuating circumstances.   I don’t get upset with you personally when your behaviour is generated, triggered by illness, stress or something out of your control.  I just ask that you acknowledge it and, if necessary, apologise afterwards.  Do I do the same for myself?

I preach also inclusion.  I don’t think that illness or disability should ever be cause for exclusion.  Sure, you may have to do things differently or a different pace, but I don’t believe that illness or disability is ever a write-off.  Yet, I hide my own problems.  From shame?  Perhaps.  Because I want to exist in the world on the basis of other terms, preferably my own and not this mongrel-beast’s?  Perhaps.  It’s kind of complicated!  But inclusion means allowance and I’m not allowing myself to be or to show the actual reality.  I am discriminating.  That is not tolerance.  I am judging.  That is not kindness.

I cannot hold myself responsible for something beyond my control, I cannot take responsibility or blame for a life or illness that I never chose.  Or even probably provoked.  I have to be forgiving.

And yet, even as I come to appreciate the all-encompassing nature of this mongrel-beast, I can also start to differentiate, between me and it.  I can see more clearly who I am and what the illness is.  Believing, understanding and appreciating actually frees me up.  I can be true to myself.  Just in difficult circumstances.  I don’t have to be the illness, I can be myself with an illness.

And most important?  I can start to take myself seriously.  Sometimes, it feels like no-one has ever taken me seriously.  And perhaps as a child, that does have to start as an external process, someone has to believe in you.  But as an adult, it’s up to me.  The first step is that I have to take myself seriously.  Then it’s up to everyone else.  Again, there’s that hypocrisy.  I cannot expect others to take me seriously when I am not taking myself seriously.

So today, I compiled a list of my symptoms, all the ones that I have ever had thanks to mongrel-beast.  It was hard work, not least because mongrel-beast is very keen on cooperating on such cognitive tasks (it doesn’t even like spelling or typing) and also because I had to face reality.  Reality is not the nicest thing in the world.  It’s kind of like looking in the mirror with your glasses on.  Not good.  But you can’t always avoid it.

I’m going to post the list separately because it is rather long and no, I really don’t expect any of you to trawl all the way through!  (Especially as I rather suspect, it’s full of mistakes and typos). Instead, it’s going to be a sort of testament.  A reality check, if you will.  For myself mainly.

I worked through the symptoms section on the Hummingbird website, it’s thorough and comprehensive.  I could say that I have learnt lots of new words but the reality is that I have immediately forgotten them.  I’ll try to link definitions to some of the stranger (mostly Latin-ish) terms.

I’m also quite glad that I went with bullet points and not numbers, it could have got a little (actually, very) frightening!

I Made a Stamp

As you have likely heard, small things please small minds.  I love small things.  You may draw your own conclusions.

Tonight, I had to package up a parcel to send to a friend in Europe.  I was very chuffed when I managed to get all five foot of draught excluder into something about A4 size (albeit somewhat plumper).  And yes, it would be me who is sending a five foot draught excluder to Europe.  (I’ve never actually sent anything to the country in question but I have sent something from.  An A2 canvas painting of the Titanic sinking.  Cheerful stuff, not exactly my taste.  But my friend was ecstatic that I’d persuaded the post office to take it).  It seems that I have something of a track record when it comes to posting random things.  You’ve seen other evidence.

Postage is ridiculously expensive these days.  I remember the uproar when the European airmail stamp hit 36p.  These days I think first class is more expensive than that now!  (I possibly sound remarkably old when I make comments like that).  Anyway, I like to know what I’m getting myself in for before going down and doing battle in the post office.  I find that the post office is indeed somewhere where knowledge is power.

I grew up in a small town (England-style, not US).  The post office had long queues, especially on pension mornings, because that was back in the days when everything was done in cheque-style books that had to be religiously stamped to death by the post office clerk, but was always helpful.  Actually, the library was the same.  The librarians were friendly and helpful.  I never had a fine in all the twenty plus years that I was there.

Then I moved here.  We have a bigger library and a bigger post office.  The librarians resent any disruption to their frantically busy task of sitting behind desks and I also have had more library fines than fillings, which is saying quite a lot with my dental history.  The post office has cordoned queue control and the whole thing at rush hour rapidly turns into Ellis Island.  With the appropriate interrogation and suspicion of course.  You don’t really want to risk asking a question in either of those places.  Your mission is simply to get in and out as quickly as possible, preferably still alive and with most of your income intact.

I make it my job to know how much my postage will cost and how it’s going where it’s going.  I write down all and any information that they may require for any random forms that must be filled out as fast as possible.  This way I can minimise the stress and confusion that results in what basically amounts to buying a stamp.  (If I’m armed with knowledge, I don’t get stressed and confused at all.  The clerk only does a little bit).

I have to agree with Tilly Bud, the service industry just inspires terror, trepidation and guilt.

Anyway, back to the stamp.  I was inputting all my variables and trying to find the most cost-effective way of sending a five foot draught excluder to Europe with not too much delay when it came up with strange little option.  I’m not a fan of the post office’s website, it’s never been particularly efficient and I tend to rely on my stash of printed price guides rather than their high-tech solutions that get me nowhere.  (I’m particularly suspicious how every time I try to find surface mail rates, it directs me only to expensive parcel services.  And in recent months it has seemed that whatever I do, I end up in some other online shop being told to buy huge books of first class stamps.  Not impressed).

This time I found, with remarkably little hassle although I did keep ending in the first day covers (the post office is apparently more keen on Doctor Who than I am), something called a ‘price finder’.  That’s my kind of thing.  Input, quote, use information against post office staff.

So I inputted.

Was very surprised by the rate.  (My draught excluder might be huge but it’s comparatively light, I can send it as a packet rather than as a parcel.  (Please don’t even get me started on dissecting that logic that means a parcel to the same destination of the same weight and dimensions is four times as expensive as a packet)).

Then freaked.

(I do that).

Next to the delivery options (it’s a little like flight tickets, please don’t choose our cheapest option), there is now a small box that says ‘buy and print’.

I’m scared by new things.  Especially when they involve technology.

And the post office.

And parting with money.

I asked husband if he’d like to come and test this for me.

As he was already in bed, he answered in the negative.

I was left to face the decision alone.

Me and one small red button that isn’t even a real button but a picture on a screen.

I pressed it.

And had to input a billion more things.

And then part with some money.

And then it asked me to print my label.

I don’t trust printing things from the internet.  They’re usually never designed to actually fit any known paper formats or printers.  And why is it that every time you do print something from the internet, it has this obsession with printing just two lines on the next page and wasting an entire sheet of paper?

I printed.

Then realised that my ink cartridges are at the invisible stage.

So I held my breath.

Because you know that’s going to make a difference.

I printed a stamp!

Not just a stamp, it had insisted on printing the addresses too in its own queer format (I prefer a nice, funky coloured marker personally) and it said paid for and lots of other official things.  And it had one of those new fangled squiggly barcode box thingys!

I have a stamp.

‘Stamp’ prints on a quarter page of A4.  (Don’t get me started about waste).

I took ‘stamp’ to husband to cut down.  He insisted on doing it with a ruler and pencil as he’s something of a pedant when it comes to precision.  But that’s why I gave him the ‘stamp’ to cut anyway, he can actually cut straight lines.  I can’t draw them.  Even with a ruler.

‘Stamp’ is now affixed to very squishy parcel (it bounces).

But I am now faced with another dilemma.

Clearly, I can repeat this process in the future.  I will be able to buy exactly (well, maybe, that might be dependent on what mood the website is in) what postage I want when I want it.  (Although most of the time, it will require traipsing into town to the main post office to find a fat mouthed post box, most if not all of the branch post offices around here have closed now, a discussion for another day, I’m sure).

But …

… is this a good thing?

Much as I hate the hassle and stress of the post office, I don’t want to be responsible for anybody, however grumpy, losing their jobs.  If we all end up buying our postage online, what will happen to our post offices?

Patterns and Disturbing Trends

Today’s date is pretty cool.  10/11/12.  Maybe you’ve already had that date if you’re in America, I’m not quite sure, where numbers start getting meaningful is where they also start getting too complicated for me.  I guess it would have been even cooler if I could have pressed publish at 08:09 or something but that would have required a little too much organisation, coordination and forethought from me.

I remember way back when I was in school, a teacher pointing out a palindromic date (I can’t even remember what it was) but I’ve always loved patterns.  Although I drew the line at spending so much time studying them in Middle School Maths.  Palindromes and the Days of the Months poem are all I have to show for four years of mathematics at that school.  Worrying?  Probably.  Did you know that the first words Man said to Woman were palindromic?  (And courtesy of the internet, I’ve finally worked out to spell that, however, it isn’t how I’ve been attempting to say it all these years).  Oh yes, apparently he said (before English was even invented however, akin to that same terrible premise of sci-fi films):  ‘Madam, I’m Adam’.

(Although they clearly hadn’t invented punctuation either at that point though.  That can be such a pain, although it does have its uses, I guess).

A slightly more disturbing trend also was established today.  Do you remember that about year ago I burned my bonce?  It was a particularly unpleasant and at times, painful, not-a-good-idea.

Today it wasn’t my bonce but my bounce.  This possibly was also more painful.  I’m not sure.  Time has at least done some healing for the previous occurrence (although I am still excessively cautious about pouring boiling water).  This morning I fell out of the loft.  Yes, you did read that right.  My grip totally and utterly failed.  And that is what I was most upset about, I may not always have the oomph to hoik myself into the loft but I can usually rely on my grip.  Not today.  I was painfully reminded that I, yet again, haven’t been as well as I would like this week.  I broke nothing except my fall which considering the tiny hallway and the hazards present was pretty successful.

I’m sure that I will survive but I now have a very good excuse for buying a new, reliable, stay-put-able loft ladder.  (Now to cough up the pennies!)  I’m also likely to now be very cautious what I do in the month of November, well, at least until next year.