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!

Of Heart or Mind

As is this the case with pretty much any subject you may care to investigate, you can just pop a few words into a search engine and within seconds (depending on the level of cooperation that both your computer and internet provider wish to extend to you), quasi-information is at your fingertips.  The wealth of information, opinion and apparent expert advice that appears can be more daunting than a minefield, laced with inaccuracies and idiots.  So are our lives enriched or merely complicated?

What happens when you’re searching for medical information?  When a loved first received a diagnosis, well, that often just was a life sentence in some abstract words and very little information followed.  Knowledge was the power that the gods in white coats kept to themselves.  Your medical story was something that only came to your ears through raw personal experience and the odd trickle of fact that came your way.

Now?

We can search for medical information and have it in front of us immediately.  Conditions that we never knew existed pop up when we put in the most innocuous of symptoms and we can convince ourselves of our imminent demise within just a few pages.

Is this a good thing?

Are we fast becoming a culture of hypochondriacs, whipped into paranoia by over information?

Or are there benefits?

When that loved one receives that diagnosis now, is it the life sentence in isolation that it would have been former or does the internet empower?

We can type those alien words into a search engine and find a wealth of information, picking our way around the idiots and inaccuracies, carefully corroborating each so-called fact and weighing it against the most treasured faculties, reason and common sense.  Nor is it just information, but help.  It is not just the story of your medical future but a guide, a map to that future with hints and tips that may make your journey easier.  We can find recommended equipment and supplies a click of  button rather than having to traipse and trawl around the all the local pharmacies in the hope of just one, tucked in the back of shelf and overpriced through lack of demand.  We can even access entire communities, a village of support, of the similarly diagnosed.  We no longer suffer in silence with a condition that no one has ever heard of.

Is this a good thing?

The internet is what you make of it.

But, if you type in your elusive symptoms and find a name does that make you a new species of hypochondriac?  Are you chasing some whim or folly of your own making?  Alternatively, are you just putting a name to something that’s plaguing the heck out of you?  Is it wrong or weak to want to know what the matter is?

A few months ago, on the ever-informative Hummingbird Foundation website, I found a lot out about cardiac symptoms in ME.  Have I suffered with cardiac symptoms?  No, not I.  I do remember one time having an asthma attack (back in the days when I was unofficially asthmatic, I’ve since been downgraded to wallow in the helpful label of ‘it’s just your ME’) and after applying inhaler vigorously, discovered that actually it wasn’t my lungs that were wheezy.  This discovery probably just made me feel even wheezier and I spent a long while trying to get my heart back in pace.

But since reading those descriptions, have I suffered with cardiac symptoms?

Surely this makes me a weak-minded hypochondriac?

Or is it the benefit of knowledge and understanding?

I now know that my lungs are not always the reason my chest is sore, why I ‘wheeze’.  I do something and when I listen with informed ears, I don’t hear the rasping wheeze of poorly lung and I don’t see the rough shuddering of lungs desperately trying to get a whiff of air into them.  It seems my lung problems aren’t quite what I assumed they were.

Lung was a problem that I recognised and was trained to watch for since childhood because of poor genetic lung history; however, heart was something for the elderly.  Heart problems are the reserve of a certain demographic and always mysteriously vague.  I had no vocabulary for my symptoms; I attributed it according to my own limited understanding.

But because I read of my symptom on the internet, does it make me a hypochondriac and my symptom just a figment of my imagination?

I wish.

Related Articles

• Ups and Downs
• WOE:  To the Moon
• Who Cares for the Carers?
• The Hummingbirds’ Foundation for M.E.

Weather Report

 

I don’t know what month or season it is at the moment but I don’t like it, not after we had such a glorious spell over the last two weeks.  Two weeks in which I was incredibly tied up with things and couldn’t fully appreciate it.  I had just realised how stunning the neighbour’s flowering magnolia was against a crazy blue sky when the sky went overcast and the petals blew away.  It’s a sad truth that we never appreciate the good until it’s too late.  A wasted opportunity.  Perhaps.

The problem with this shift in seasons is what to wear.  I’d even manage to find my summer coat.  I’ve been in sandals.  There’s the problem.  Now I’ve worn my sandals the Law says that I can’t go back to boots, unless walking somewhere in torrential rain, until September at the earliest.  This is an unfair twist of weather.  I have cold feet, very cold, and I’m too stubborn to wear boots.  Or maybe a little lazy to go back to plasters and two pairs of socks.  Sigh.  I can’t win.  Serves me right for casting that clout though, perhaps that’s why I’m poorly.

The sore throat of the century has turned into a cough/cold combo which isn’t endearing me to my husband (apparently my cough is booming, you’d have thought that I was only coughing to annoy him) and that I’m just too Tired to deal with, besides which muscle fatigue adds a few other er, complications to coughing.  I’m wandering the house with a loo roll and a large bottle of hand gel and probably should add a large handbell, an ‘unclean’ bell and not one for summoning sympathy and aid, that isn’t forthcoming.  And at times with a liberal dose of self-pity.

But I have my knitting to soothe my soul and have reluctantly accepted the aphorism about best laid plans, some things will have to wait until I’m back on my feet, unfortunately others can’t or won’t.  It’s frustrating but I know that life rarely goes the way I expect.  Just one day at a time, I remind myself.

In the meantime, as I am chain eating my way through cough sweets, I also have to remind myself that both I and the dentist would prefer it if I left them in the middle of my mouth rather than tuck them down the side of my teeth where they’re much more comfortable as now, suspiciously, I have a large row of fillings in that very location.  It’s also possibly connected to my questionable habit of leaving a cough sweet in over night, well in either case I’m going to choke so what’s the worse that could happen?

Another sign of a Bad Cold is the fact that I can’t smell, other than the occasional whiff which takes me by surprise, the copious amounts of that very famous eucalyptus oil blend all over my pillow.  Not good.  Occasionally my eyes burn too, maybe I have actually got too much on the pillow.  I don’t like that other unctuous ointment that was lathered onto chests when we were little by overenthusiastic mothers, I don’t get the need to be embalmed in goopy stuff that stinks and mushes into nightwear and bedclothes so I stick to the oil.  Far more civilised.

Well, whinge over, I might go to bed or I might add another row to my current WIP.  It’s slowly growing but the hard bit is next.  I finished another project today which has had me tearing my hair out so I was glad to see that done.  Before I went bald.  Which is a distinct genetic possibility anyway.  I’ll catch up with posting those another day and yes, I do have more than one project on the needles at a time.  Doesn’t everyone?

 

Ups and Downs

I hate it when the beast of fatigue drags me down for there is no resisting that monster, I am out for the count until it chooses to release me again.  Neither does it operate on a civilised timetable either, it can sneak up at any hour, night or day.  In my case, after a long, restless night  it usually pulls me under at about 7h.  Cheers for that.  That’s yet another day messed up.

It’s hard to explain how you spent your day, or perhaps just plain embarrassing to, when you require at least eighteen hours sleep.  Staying in bed equates too easily to laziness, an indulgent lie in until say 9h may occasionally be justified but how can I justify the hours and days that pass in an exhausted haze?  You feel defeated, a failure.  So when you shakily do the maths and find that gives you another six hours, you, for a brief gleeful moment, feel that you have time to get on with your life.  Then you remember that in those remaining six hours, you will still be bed bound and resting, saving your strength up for necessary trips to the bathroom and kitchen.  There’s not a lot else that you actually have the strength or time for.

This was the worst bout that I have had in a very long time, perhaps even since my original two bouts back all that time ago.  There was absolutely no way that I could fight the tiredness, no way that I could push through or just try to ignore it.  I was weak and achy all over, with the pains concentrating either in my hips or my back.  Lying on one side or the other would give me that mean, painful numbness or sharp pins and needles so I had to keep turning, trying to find a new comfortable position whilst negotiating every very painful lump in the mattress or pillow, or just a fold of clothing.  My circulation, if possible, got worst and heat sources just scorched me rather than warmed me through.  When I was rough last August, I was frozen.  Now in December, I kept burning up.  But no temperature.  I checked.  Sometimes my heart felt like it was racing or going too slow.  But again, it never showed on counting.  My poor posterior got worn out anytime I tried to sit up for a period of time.  Then I got hideously bad sweats (I mean, a lady should never sweat anyway, just glow apparently) but there I was shivering cold and rivers pouring down me.  I lost my appetite and that my friends, is a very bad sign.  To walk to the bathroom or kitchen (we live in a flat so fortunately everything is on one level) was like undertaking a marathon, leaving me shaky and desperate to lie down again.  (I promise you that I am really not that unfit).  Ironically, despite sleeping so many hours of my life away, this is when my insomnia is also at its worst.  Exhausted but unable to settle, wasting away energy in tossing and turning.  So not fair.  In fact, it sucks.  Absolutely sucks.

However once I finally started sleeping again at the beginning of January, things looked up remarkably quickly.  The perfect bedtime routine was to go to bed by about 19h then get up again at about 23h, midnight which is unfortunately when I am at my brightest.  Make some macaroni cheese and then do some word puzzles, potter on the computer and then go back to sleep in the small hours.  Slowly there were more hours between waking up and going to bed at 19h.  Oh, and even less naps.  This magical formula worked for me, kicking the worst of the bout into history.  (I hope, I’m still wary).

Did I mention the macaroni cheese?  I like macaroni cheese, pasta is my go to food and I have a wee thing for cheese.  Macaroni cheese is my number one comfort food.  Although admittedly, depending on my mood and the weather, pizza is a competitor.  Well my unhealthy relationship with the stuff descended to new lows, the world’s biggest macaroni cheese obsession in fact.  That coupled with the fact that I was also crazy about chocolate milkshake (and I’m not usually a fan of that) means that there will be certain consequences of this fad diet that will live for me for quite a while longer, regretfully.  But at the time, I decided that it was better that I ate than starved.  There wasn’t really anything else I fancied, I mean, I couldn’t face tomato at all which is really weird.  And not good in a house where, as I said, pasta is the main meal.

But there are always new challenges to face.  The hardest thing about feeling better is the unbridled optimism that comes with it.  I am not by nature an optimist, you may have noticed, but I fall into the honey trap every single time.  Feeling better is of course a relative term and while I love the new-found freedom of a fog-free head and having the energy to make and eat a meal, it’s way too easy to go overboard.  Without the fog, I can rise to whole heap of new challenges and besides which, I’m seriously bored of being stuck in bed and there’s so many things that require urgent attention right now because I have been stuck in bed so long.  So I tend to over do it.  A little.  A lot.

So January started looking up.  (Although bizarrely, the pain has actually got worse).  I’ve done quite a bit, had a lot of help and encouragement from friends that I hadn’t really even realised that I had, been out socially even.  Slowly trying to find a new balance, a new rhythm.

But February?  Well the storms clouds came in with the new month and I have to admit (as I squirm in shame at my so-called laziness) that I have literally spent the week in bed.  Feeling totally and utterly rotten, paralysed almost and not at all able to pull the duvet from off my head.  It has sucked.  And I’ve been totally unable to do anything about it.

At first, I thought I was ill again.  The tired kind of ill.  But that didn’t quite feel right.  Ill, some stomach bug or ‘flu mixed up with the dregs of the worst bout of tiredness in years?  Other than the two vicious stomach attacks this week which involved strange reactions to perfectly allergen-free foods, breathtaking nausea and discovering that, although it’s a rotten unpleasant experience, I’d rather just throw up than find that I don’t have the strength to actually puke anymore, there were no other symptoms of a stomach bug.  ‘Flu didn’t quite cover it either, it’s a little bit hypochondriacal anyway.  So, guess what?  I had to admit to myself just who had I fallen victim to.  Yeah, that other old friend.  Yeah, you know, that one.  I can’t remember experiencing such a paralysing numbness before though, I was just frozen to the spot unable to do anything or even move.  It’s got to be bad when you can’t even motivate yourself to get out of bed when your belly is empty or worst, your bladder is desperate.

So, yep, this week sucked but today I was up and about again, finally.  Well you know, relatively.  I’m still going to require inordinate amounts of rest but at least I’m at a point where I have to remind myself, and force myself, to take a nap, to rest during the day and my hours are a little bit more ‘normal’.

You know what they say anyway, if it’s not one thing then it’s another.  That’s my life.  One thing or another, one thing after another.  But if you don’t laugh then you cry.  I’m too tired to do either actually so I’ll just plod on.  There’s plenty more of February a-waiting.  And yet another pile of washing up with my name on it.

So You Call this Walking?

It’s been a rough week, just when I think I can’t possibly get any worse then I seem to slip a little further down the very sorry slope.  My head seizes and it’s so hard to get my fingers on the keys in the right order which makes the whole typing process a rather slow and arduous one.  But even before that I have to get my ideas in shape and find the inspiration to start a post and that’s in between the 14-18 hours of sleep that I seem to be needing at the moment.  The days get very short when you need that much sleep and rest, the washing up starts to breed enthusiastically across all the kitchen surfaces but I just try to concentrate on getting a little food into myself every so often rather than cleaning up afterwards; sometimes you have to pick your battles.

So it seems a good time to work on another whingy, selfish post about being ill.  You’ll have to bear with me or catch up another day when I have something more positive, funny and upbeat to share.

This aspect of my illness has been on my mind quite some time.  Sometimes I feel guilty that I can manage so well but other times I just wish people would realise just how much of a battle it is.

You see, I walk.  The walking is meant to be the most affected area of my life but it doesn’t always seem that way.  Part of the problem is that quite often I don’t have a choice.  We haven’t had a car for two years now and no matter how ill you get, there are always appointments that can’t be dropped so what can you do?  You get up and you walk.

Walking isn’t the worse for me, that’s standing.  I can’t stand for any length of time, even during the good patches I will always struggle.  I’ll look for alternatives where possible but sometimes I’ll just have to give up and sit on the floor, much to the horror of the family.  I dread having to stand.  It’s the biggest thing in my mind if I think about the kind of employment I could do, I can’t stand behind a counter all day that’s for sure.

Sitting has its own challenges too.  My balance isn’t helped by the tiredness so I tend to tuck my legs up, partly because I’m still too short for them to rest comfortably on the floor like any other civilised adult and I’m best with a good backed seat, preferably with arms.  Pokey chairs make me wobble.  And I appreciate a bit of padding.  I have to shift about to keep the cramps at bay and the circulation going.  Again this doesn’t make me eminently employable either.  On an office chair I’m liable to be sitting with a least one leg drawn under me with my shoes pushed off, this is not acceptable employee behaviour.

But walking, I keep on walking.  I’m embarrassed because I’m judged on my ability to walk.  People see me walking along and I guess it’s just too easy for them to assume that there’s nothing wrong with me after all, that I’m just making a fuss if I can manage to go out walking.  But as I said, sometimes you don’t get a lot of choice.  And there’s plenty that people don’t see or understand.  So I’d like to set a few things clear and show some of the things that people just don’t take into account.

It’s only a few miles into town and back and whilst some people think it’s a challenge to walk to the end of their own drive, I’ve never been like that.  I’ve always walked.  I think ten miles is a perfectly leisurely accomplishment and despite short legs, I cover ground.  You have to see it from the perspective of what is my ‘normal’, not yours.  Instead of a hike being a breeze, I struggle into town and barely make it back.  I am so slow that my husband asks whether I’m going to start going backwards, he’s pulling his hair out in frustration at my pace.  I’m going all out but it doesn’t get me anywhere.  It’s the slowness that makes me want to cry with something like a sense of shame and failure.

As well as being slow and getting so tired so quickly, there’s the physical effects.  Although the worst of it won’t kick in until a day or two later, the pain can be almost unbearable when I’m walking.  I look the very worse stereotype of an old man.  But no-one really seems to notice, they just see the ‘walking’.  My hands clench, knotted up with pain and my feet often curl in my boots, rolling up in fatigue and cramp so I have to walk on the edges, tottering and uncomfortable.  My lungs grow heavier and heavier until I’m convinced that they’re made of concrete, too solid to lift in my chest.  I am bandy legged most of the time, weak in my joints and trying to keep my balance.  Sometimes my hips ‘drop’, adding to the clumsy, awkward gait.  There are aches and pains all over my body.  I try and focus on putting one foot in front of the other, it’s all I can do sometimes as I wonder whether or not I can actually make it home.  My vision goes blurry, I see nothing, I’m just willing one foot to move, just to be one step closer to home.  Other times it’s like a red mist, a strange head rush where the world is bleary and I’m all woozy, hoping that I don’t faint.  I stop thinking, pouring all my energies into moving forward, into making it home so that I can collapse.  I imagine a railing next to me that I can steady myself on, grasping it in desperation, hauling myself along on it.  Just another step, just one more.

This is when I am out.  But before I have to go out, I have to manage my energies carefully, save them up ready for the expedition.  I rest up the day before, I go to bed early, I choose carefully when and whether to shower or wash my hair, I take a nap before I leave (I’ll even get up earlier than usual to get ready and then have a nap before leaving).  Anything to give me the most energy possible.  I put aside anything that might be too much.  Life goes on hold just so that an appointment can be honoured.  Then I come home and collapse.  Not just in the immediate but for a day or two or three I might be laid up, recovering.

By the time I have just about got back to ticking over again, there’s always another appointment, something else that needs doing, somewhere else that I have to be.

This is my ‘walking’.  Don’t judge.  Look deeper.

What it Means to be Tired

I know I say I get tired.  Everybody gets tired.  Sometimes it’s even a pleasant, positive thing in your life, yes?  Well, ME tired hits you completely differently.  Sometimes even I don’t realise how much I’m being affected by it.  Here’s some examples of when it hits you just how tired you are:

• You open a well-known reference source that you use all the time and either your mind is completely blank as to where to look (think of desperately trying to recall something as basic and familiar as your ABCs) or your mind calmly sends you to the wrong end (think of ending up in R when you looking up something under F).
• You may not be the world’s best singer but I think the song test is a very good way of telling just how badly ME has hit you, play a song, make it something you know really well, a favourite even.  Now trying singing to it.  Never mind tune, it’s impossible to form your words in time and you end up sounding like a tape recorder running out batteries.
• You can do the same with your second language, the problems are even more noticeable when it’s  not your mother tongue.  Never mind singing in time, if you have to concentrate on saying anything with an accent and correct pronunciation, you’re gonna suck.  If the words even come to your mind.
• You can’t explain things or give instructions or directions, the words don’t just won’t come in the right order and the more technical it is, the more the words disappear into the cotton wool.
• You can’t move in time with music, although admittedly you were never much of a dancer before.  Now you’re like a wooden robot with lead boots, if you can coax your body into a move then it’s normally by the time that everyone else is five moves down the line.  I find that line dancing is the most challenging because it’s based on standing not moving, I can line dance (albeit fairly badly due to my own natural limitations) best when sitting down.

ME sucks.

What Tired Means

I’m tired.  I’m tired today.  I’m tired most days.  I can’t sleep it away and it gets boring after a bit, especially when I end up becoming a prisoner in my own home.  A home that rapidly becomes messier and dirtier because I’m too tired to deal with it.  Sometimes you want a little hope, that tomorrow you’re going to feel good.  There doesn’t seem to be any hope sometimes.

Mental health presents its own challenges.  People don’t take it seriously enough.  I have another invisible illness that even fewer understand.  It’s hard to explain.  Having ME means you get tired.  Everyone knows what tired means.  Or do they?

The biggest symptom of ME is a lifestyle itself, it’s the tiredness.  The never-ending, aching tiredness.  You see ME causes muscle fatigue.  What does that really mean though?  To you, to me, to anyone?

The best comparison for ME is flu.  THE flu.  The proper flu where you feel like death warmed up (or chilled down)  and you’re just so achy and sore everywhere.  The proper flu where you can barely crawl out of your bed and you just can’t do anything.  That’s flu.  And that’s kind of how ME hits you.  You’re exhausted, drained by everything.  Everything becomes a challenge.

Muscle fatigue sounds like aches and pains.  Perhaps you’ve spent a day gardening or hiking and come home feeling sore and achy, you know that feeling?  Maybe you’ll feel worse in the morning when you get up but it’ll pass.  Have a hot shower, take some medication.  But it’s a good feeling, it comes from success and achievement.

There’s nothing good about ME’s aches.  There is no success, no achievement.  It just hits you out of the blue, you can wake like it, you can do nothing all day.  You wallow in it, day after day.

Muscle fatigue isn’t just about those aching limbs and sore back that labour rewards you with.  There’s an awful lot more muscles in the human body than that.  For example, your lungs are muscles.  It hurts to breathe, I struggle to breathe.  They think my ‘asthma’ is actually just part and parcel of my ME symptoms.  Your heart is a muscle.  It aches too and gets tired.  Your entire digestive system is inherently based on muscles.  Let’s not even go there.  Your brain is a muscle.  It hurts, it aches, it gets tired.  You can’t think, you can’t find words.  Then despite this all, you try to keep smiling.  Too many muscles involved.

Emotions drain me, the good and the bad.  A light scarf, even a necklace, they quickly become to heavy for me to wear.  Sound hits me like a rubber wave of pain.  It’s exhausting to be exposed to loud noises, it tires every part of me.  I avoid certain television programs and films because they’re just too demanding, too much emotion and too much stimulation.  I like the lights turned down low, it’s more restful.  Socialising, never mind anything else about it, is just so tiring.  I can’t keep up.

There is no rest either.  Nothing seems to shift it.  You lie in bed trying to rest and everything is so uncomfortable.  The duvet is heavy, like a steel casing.  It presses down.  The mattress has more springs in it then seems humanely possible.  They cut in like harsh welts against the skin.  My limbs are heavy and lie weighted against the bed or each other, causing their own pain.  I have to keep moving to fight the pins and needles.  The pain comes from within and without.

That’s just the tiredness side of it.  ME delights in throwing up all sorts of quirky symptoms out of nowhere.  Just to give you a little something extra to deal with.  My circulation is dire, I spend most of the time with attractively grey corpse-coloured feet.  I can’t go in the freezer because the cold ‘burns’ and makes me feel ill and even more tired.  I get a sore throat regularly, usually it’s a warning, a precursor to a bad episode.  I’m always so, so cold.

ME is the enemy I spend my life with.  We’re in constant battle.  ME isn’t me, I’m someone else.  Or I try to be.  But you see ME has an iron grip on me.  This autumn is a milestone that I’d rather not have reached.  I’ve spent half my life now with this beast.  That’s all my adult life.  I don’t know what it is to be a well adult.  I’ve had some good patches, of course, along the way.  But half my life.  It’s crazy.  After this there’s only more years with ME and fewer years of having been well.  I’m not going to escape, I can’t.  I know that.  But I’d like some hope.