Two Little Letters

In this language we make such a fuss of four letter words.  Perhaps that’s why swearing is associated with limited vocabulary, we learn three-letter words from Peter and Jane along the lines of cat and dog and mat and then we graduate to four letters.  Some people stick there.  Despite the bad press of four letter combinations, there are worse things, smaller, fewer letters.  There are just two little letters in my life, just two little ones, that make such a difference, that have changed such a lot.  It’s a slightly ironic pairing, you’ll have to admit, when you find out that my dread enemy is ME.  Just two little letters, they mean so much by their effects and yet mean so little to so many people.

I’ve tried not talking about it, I’ve tried being ‘strong’ and I’ve tried ignoring it.  ME is still with me.  Just two little letters but they follow me around like some mangy flea ridden mongrel, not exactly my choicest companion and not exactly welcomed by others either.  Now I have a stick it has become a little more obvious that I am being followed, a bit like Paddington leaving the bacon in his suitcase.  My stick is my bacon (vegetarian of course) and people want to know why it’s hanging around.  Maybe it’s the smell.

So I have to ‘fess up.  Sometimes I’m a little embarrassed, other times I even feel a little guilty because I know that so many of the people around me have real, genuine problems.   And ME?  Those two little letters?  Well it may be a real condition but most folks don’t believe in it, especially those who pride themselves on their expert status.

It’s just two little letters and it doesn’t mean much to people.  I get the polite ‘oh’ of acknowledgement but I don’t know whether to take it further.  Are people interested in knowing more about my enemy, ME?  And what would I say?  I don’t know, I know it’s real because I live with it and if I had a choice, I could be doing a lot more with my life.

Other times people suddenly look highly sympathetic (strangely it’s a similar tone to that of uttering condolences in some tragic circumstance).  I get a little suspicious when I get that reaction.  I know which two letters I’m talking about, other people don’t.  They nod knowingly and may say something about the condition or things that they’ve heard, mention a friend we both have in common who has the disease.  I know then that they’re talking about something very different.  They’re just a letter out but it makes a big difference.

I don’t have MS.  Everyone knows about MS.  MS is socially and medically acceptable, a worthy cause for sympathy.

I have to shake my head and tactfully explain that I have ME, two other little letters which still have a huge impact on my life.  Just not in a way that anyone seems to understand or appreciate.  I try to explain but I don’t have a polite off-pat introduction for my mongrel friend of two little letters.

Apparently I’m meant to be envious of those who have that other two letter disease.  If envious is wishing myself in their situation then I’m not.  I wouldn’t wish MS on anyone and I’m too busy dealing with ME, two other little letters which are a life sentence, myself.  Perhaps at times it is easy to be envious of the position of MS sufferers, of their status in society.  But that’s not really something I do think about anyway, I certainly wouldn’t dwell on it.  My two little letters keep me busy elsewhere, trying to just do the basic everyday things.  However personally, I think it would be a lot easier if MS was the two letter friend that I had to introduce.  It would be quicker too and I think that I’d probably get a lot more understanding and support, which does make me sound like a very pathetic, attention-seeking loser.  I’m not looking for sympathy though, I’d just appreciate it at times if there was a little bit more understanding of the beast that is my two letter friend.

It’s hard going about with a stick, it is a mark of shame when I think of all the problems that my friends and acquaintances are struggling with.  Who am I to complain?  There are people who I’ve known all my life that I’m now being forced to explain that I have ME and that it’s no new thing.  Half my life, you would have thought the bacon would have decomposed by now but no, still got my faithful mongrel-beast following me around and lowering the tone.

I was with my mother the other day when we bumped into one of her friends.  Who has of course known me since childhood.  Everyone assumes injury at first, I’m not quite sure of the logic of such conclusions but who am I to regulate the logic of the human mind.   She asked of course about the stick after which ensued a conversation much like all the others related above.  I ended up saying that I had had those two little letters ME in my life since I was a teenager.  (I was tired, a gleeful, impish, trouble-stirring streak had taken over).  She, perhaps quite rightly too, then demanded why nothing had ever been said about it before. My mother, already embarrassed by the stick-wielding, hat-wearing idiosyncrasy who was accompanying her but that she still persists in being related to, was slowly sinking into the floor and manage to stammer out ‘well it’s not the kind of thing you talk about’.  I am a guilty secret.  Because of two little letters.  It is a particularly malodorous mongrel, the kind that not even a tramp would welcome at his heels.  Just as well Depression doesn’t take to needing a stick was my final thought on that conversation.

ME is something that I learnt to hide but it still surfaces.  And when it needs a stick there is no escaping.  I am out.  But I still don’t know how to explain my mongrel friend.

 ~

I have been reading some new information of ME and am still struggling to process it.  But there’s a very interesting chart about the whole MS v ME thing which is either illuminating or scary, I haven’t yet decided.  And if anyone reading this has an off-pat introduction for my two lettered mongrel-beast then please share!

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.

Stick Will Out

I don’t like things that make me stand out, things that made me stand out as different.  (Isn’t it liberating that you can start blog posts with the dread ‘I’?)  I’d hate to wear white trainers, huge ocean liners of glowing white-ness (albeit briefly).  New shoes too make your feet feel enormous and obvious.  But there’s other things too, the ones you dreaded and loathed as a child and teenager: glasses, braces, spots.  All glowing Belisha beacons shrieking ‘look-at-me, look-at-me’ and not even in a positive way but in a morbidly distressing, humiliating ‘look-at-me-I’m-a-freak’ kind of way.  A beacon with a siren call invitation to others to mock, stare and tease.

I like to keep things to myself; I don’t like to stand out as different.  (This may be a slight paradox when you consider that my standard dress code involves DMs and a Western hat but I have often noted the Jekyll and Hyde inconsistencies of my personality, normally despairingly with a hint of frustration).  It’s not that I want to blend in, choosing some teenage high school stereotype persona to morph into; rather there is a degree of wanting to fit in.  To find a place in the world for myself, to be accepted for myself.  There is a difference between the two.

I fight a long time war with two illnesses, both invisible except to the trained eye, and I have perfected the mask I wear in public.  I don’t want to make a fuss; I don’t want the eyes on me.  So it’s just easier.  No-one sees me battle.

Then last summer my husband came up with a cunning plan.  A friend of ours uses one of those hiking sticks, trekking poles kinds of thing.  (I would like to point out that he’s eighty so this is a perfectly acceptable accessory).  Husband decided that one of these would be just the ticket for me.  I think he was fed up of towing me up hills.

So we went and investigated walking sticks, I, for my part, very reluctantly.  A stick is a badge of shame, a sign of failure.  I do not need a stick.  I’d rather wobble and be towed and be stuck at home by turns than have such an outright Belisha beacon of my ineptitude.

I could come up with a lot of other, more solid, reasons why I had no need of a stick.  Well, for starters, I have a husband.  No, that didn’t wash particularly well.  Apparently ‘for better or for worse’ doesn’t include towing.  Who knew?!  Well, sticks are for properly ill people.  Husband was convinced that as I had been struggling all year to walk anywhere that I was most likely in this category.  Thanks.  They cost an awful lot of money.  Husband set his chin in a stubborn line and told me that I needed it.  Thanks.  (I hate spending money on myself).  The final straw I clasped to, the last rock between there and losing my dignity forever, was that I would never be able to walk safely with a stick, I would trip over the third leg all the time.  (Well, I already have perfected tripping over two, a third was just adding to the confusion).  Husband didn’t buy it.  The excuse not the stick.  Stick was purchased.

The problem is that people see me with the stick.  They then think that something is the matter.  Have I trouble with my knees, hurt my leg?  It’s a little bit hard to explain that actually I’ve had ME for fourteen years.  (The majority of my circle was beautifully oblivious to this).  I sigh and explain that it was my husband’s brilliant idea because he was fed up of towing me places.  It makes people laugh.  I like making people laugh.

Reluctantly, I have to concede that the stick has actually been a good thing.  I can use it to poke things off high shelves, to gesture and to sheepdog clueless younger brothers to the safety of pavements when they attempt to walk out in front of a car.  It’s also quite good for poking and beating them with too.  A well-aimed jab of a walking stick to a foot makes people surprisingly docile.  I can actually make it up the stairs to my flat and it’s jolly useful for levering myself out of car seats with.  I don’t tell husband this of course.

I can lean on it and prop myself up on it.  It steadies me when I’m walking.  It helps me up stairs and hills.  It stabilises me on the way down.  I quite like my stick and take it everywhere with me.  I call it my third leg and feel lost without it.  I don’t tell husband this of course.

But now everybody knows that something’s up.  I’m still not comfortable with this.  My main circle of associates are on average a lot older than me so I’ve spent a lot of the last few months feeling rather guilty about the stick.  I’m not thirty yet and they’re all sixty plus.   If they don’t need a stick, why should I use one?  It seems selfish, lazy, attention seeking.  All characteristics that I loathe.

On the plus side, I have now been asked if I would prefer a disabled access carriage when I went with young friends on a miniature train ride.  I’m not sure entirely if that is a plus.  I was embarrassed.  Youngest friend was very disappointed that we didn’t get to go in the ‘special’ carriage.  But I can now use lifts in shops without being evilled by well-meaning strangers who previously seemed to believe that I was a specimen of lazy, modern youth.  This peace of mind however is exchanged by the discomfort of being seen with such an aid.  I can’t win.

And yes, I have on occasion tripped over my third leg.  I can think of two incidences, one of which was spectacular and involved a pirouette (no, I didn’t know I could do those either) and landing very heavily in the concrete communal hallway outside my flat, ouch.  But that’s not quite as often as I was expecting.

So on the whole, the stick has been useful whilst absolutely mortifying.  It has ‘outed’ me and my illness to the world, which may or may not be a good thing.  I’m still undecided.

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.