It’s Been a Bad, Bad, Bad Day

Where do I start?

This morning?

When I got up at ten to eight so I could be ready by half past nine only to discover that it was now, for reasons that I really can never fathom, actually TEN to NINE?

I don’t do mornings at the best of times.

I am very slow in the mornings.

To find that, for reasons that I can never really fathom, I now only had a mere half an hour to eat breakfast, shower, do my hair, get dressed and get ready was a little bit too much to ask.

And definitely a lot more than I can cope with.

I should have given up then and crawled back into bed.

And yes, feeding me is a priority.  Without food, I cannot do anything.  In fact, I normally wake up at half past eight, have my breakfast then go back to sleep.  Without food, I don’t even have the energy to sleep!

But, somehow, unbelievably, I managed to do it.

I was frazzled.

And had to exit the house unpainted.

I don’t like going out of the house without my slap.

It doesn’t feel safe.

It’s definitely not kind to or fair on other people.

I was frazzled.

And then a half a dozen other minor things just didn’t go well.

You know, the sort of piddling trifles that really aren’t hugely important most of the time but when you’ve already had such a rotten start, they really don’t HELP.

I had to leave early, a proactive choice because I really didn’t have the energy to deal with a panic attack.

And by that point slowly crawling home on foot up a very nasty steep hill was actually preferential to staying put.

I came home.

I knew that I had a cake to make for this afternoon.

A basic, simple, straightforward cake.

(The previous one wasn’t, at all, and I will be telling you all about that another time but that cake does not belong on Bad Days, it was a surprising triumph (relatively)).

I made one exactly the same earlier in the week but plain not chocolate.

It took 45 min in the oven.

I started with just over three hours to go before I had to go out, me and the cake.

The cake, naturally, because this was already a very Bad Day, did not cook.

How can a cake choose not to cook?

I had to leave without my cake.

I was feeling so miserable by this point that I left the house in my slippers.

There was no way that I could face boots and bootlaces only to take them off five minutes later at my friends’ house.

I remembered my knitting bag.

And my mobile.

And the DVDs that I’ve been promising to lend for the last month.

But forgot my ‘handbag‘.

My handbag is also a security thing.  I feel safe with my handbag.

I didn’t feel safe without it.

It was the kind of day where having my handbag with me would make all the difference.

Well, probably not, but I’d at least feel slightly better equipped to face the Bad Day.

(Maybe I should start sleeping with my handbag as some sort of Bad Day prevention device?  Hmm).

(Come to think of it, I didn’t sleep well either).

It wasn’t too bad though.

There was a delectable cream sponge and profit-roles.

I like profit-roles.

Then I got the news that my external hard drive is irredeemably fudged.

I have lost my entire life.

Because, of course, my entire life is stored in data on a 500 gb hard drive.

Well, a lot of it was.

I think the Baby Photos were on it.

And all my downloaded knitting patterns.

And all of this year’s photos.

(Husband made a really cool shark biscuit the other day).

And all of the recipes that I’ve spent years writing up.

And probably a whole more ton of stuff that I have yet to desperately need and therefore miss.

I’m not bawling, not just yet.

But the Voice is trying to come back.

It’s just that I don’t like losing things.

And probably I do ‘hoard’ things, ‘useful’ things.

The kind of ‘useful’ things that probably mean that my life will go on, somehow, without them.

And husband says hoarding things ‘virtually’ is just as bad a vice.

But I just get so attached to things.

And I remember them all, just like old friends.

Each pattern or recipe or photo.

They mean something to me.

There is security in saving things, in having everything that might ever be needed.

And my blanky died.

Blankies are meant to last forever.

And I certainly wasn’t big enough to be ready to let go either.

So as I have no photos, I’ll leave you with a song.

A song that kind of describes today.

(Some of the lyrics might not be kosher, however).

Oh, and this evening I just found out that a dear old friend has passed away.

It’s been a Bad, Bad, Bad Day.

Can I go to bed now?

 

(So, of course, this link won’t work either).

October’s Me

I am lost and lonely
I wonder where the future will be
I hear hearts breaking
I see bitter tears
I want peace and comfort
I am lost and lonely

I pretend that everything’s OK
I feel overwhelmed by it all
I touch in a world of darkness
I worry about everything
I cry all the time
I am lost and lonely

I understand that there may be hope
I say it’ll all be OK after all
I dream that it will be
I try to make it through each day
I hope that I can
I am lost and lonely

From a template such as the one here, this was written back in October 2012.

(And can anyone tell me if poetry is fiction or non-fiction please?!)

Loss of Self

(Can I tell you a secret?

I grieve.

There are moments when I am broken in spirit and overwhelmed by a profound sense of loss.  I try to remind myself that there are countless thousands, if not millions, of people who are in a worse position than I am but my heart won’t listen.  I put a brave face on to the outside world, set that stiff upper lip but all the time my heart is breaking.

Most people feel that it’s handing over your self-care to another person that causes a sense of loss, a sense of shame and a complete loss of dignity.  But the reality is that illness, chronic illness, will have robbed you of every last shred of dignity long before you get to that stage.  That dignity comes from our identity, our sense of self.

I cannot think of anything worse than anything to abandon self-care to a stranger, someone appointed by a remote, impersonal power through a collective, communal sense of duty to look after those unable to look after themselves.  There is perhaps slightly more grace in being cared for by loved ones but maybe that’s the point and I speak too rashly and harshly.  Think of just the nursing profession, strangers who dedicate themselves to the care of the needy and vulnerable.  Sometimes we do have to hand ourselves other to strangers, to specialists and to experts, who are best placed to help us.  I think what is needed is trust, we need to be able to build relationships, to connect and to trust, whether that person is a stranger or not, when we hand over the very last vestiges of our dignity and identity.  Perhaps the sense of shame comes only from myself.  A sense of failure too perhaps.

There is that moment where your life divides into two parts, the before and the after, that moment when a doctor or other medical professional gives you that diagnosis.  Perhaps you only hear incomprehensible medical names and terms, perhaps you only comprehend that sense of fear, dread and threat.  But what is lost, and will be lost, is your identity.

If illness only deprived us of being able to climb Mount Everest, of running a marathon every week, of being able to run six international businesses at once … well, wouldn’t that be bliss?  Few of us really would be impacted after all.  But illness, chronic illness, is so much more than that.

I don’t have that clear demarcation, I don’t have the privilege of ‘having been’, I have been ill all of my adult life and in some ways I know nothing else.  That makes me sad, sometimes I feel cheated of my potential, of being able to have a life that I choose.  I’m not one for self-pity but grief doesn’t always rationalise, it is a tidal wave of loss, from which there is no escape.

In fact, it’s when things are going better mentally, when I find a focus that I feel this loss the most strongly.  I cannot be who I want to be.  I cannot be who I am.  I disappoint and frustrate myself.  When I can see so clearly what I want to do, what I want to be and yet this mongrel-beast gets in the way, refuses to let me be, never mind achieve, I grieve.  I have found my feet in one sense but cannot crawl from the bed in the literal.

It’s absolutely crushing.

I don’t want to climb mountains, or run marathons or international businesses, I just want to be me.  All those things that I have worked so hard to achieve, I have worked so hard to find myself and to be comfortable in my skin, to have that dashed away from me, it’s heart-breaking.

And so often it’s the trivial things where I feel that sense of loss so keenly, the sort of thing that you wouldn’t ever think could really matter or be important.  Things like being able to cut vegetables properly.  But when you think about it, it is a skill and one that maybe you had to work at.  It is something small that says a lot about us, whether we cook, whether we enjoy cooking, whether we’re any good at cooking … Instead the sharpest knife becomes blunt and clumsy in uncoordinated hands, food mushes rather than slices, there is no technique and if half the pieces are of similar size, well then, that’s a miracle in its own right.  And all the while, there is that voice inside your head that tells you ‘this isn’t me’.

But it is.

Illness isn’t a straightforward, downward slope to the total loss of dignity either.  It often ebbs and wanes.  Sometimes this can be more painful; you can’t accustom yourself to a level of loss before proceeding, or descending, to the next.  What you can do one week, one day, one hour may quickly become impossible.  You can’t take anything for granted.  Each new setback is enough to make you howl.  If you had the energy.

Our sense of identity is tied so closely to the things that we enjoy.  Not being able to do the activities that we enjoy, not being able to eat the foods that we enjoy … illness leaves no aspect of us, of our identity, untouched.  But it’s not just about not being able to do the things that we enjoy, take for example my knitting.  I love knitting.  It’s one of the few activities that I can consistently manage, although in varying proportions.  But it’s so much more than just a simple activity; it’s so much more than just one of those things that I do.   It’s an expression of personality, of creativity.  It is the way that I express myself.  When a week goes by where I physically cannot knit, I feel that loss keenly.

I don’t know if illness, personified perhaps, does target those specific skills and those things that so clearly define us as us, sometimes it feels like it does, or if perhaps we just feel the loss more in those areas.  If you never had a particular skill or talent then you probably don’t notice or feel that loss so much.

I know that there are people whose memories are bad, totally fallible.  I live with one of them.  This means I have even greater responsibility as a memory-keeper, I remember my memories and those of others.  I’m known for my memory abilities.  I am a guardian of family history and stories.

No more.

I cannot remember what I did yesterday never mind last week.

I cannot remember words or dates or things that I need to do.

Someone will tell me something and I will wonder out loud how they know that.  They then tell me that I told them, just a week ago.

Behind me there is a great void of nothingness, a black hole where memories could and should exist but I remember nothing.

I feel a great sense of shame, embarrassment when faced with the reality of this loss.  Actually, it frightens me more than I care to admit.

In so many ways, this is a loss of self.  I’m losing a skill that I am proud (!) of and I risk losing my history.  In a way, I become homeless, that sense of belonging comes, in the greatest part, through memories and remembered connections.

I have a fear of losing things, my biggest fear is forgetting.  It is why I write, it is why I photograph.  I’m terrified of forgetting.  I always have been.  Memory, remembering is important to me.  And now I am faced with blank spaces, black holes and that nagging feeling that there really is something that should be in my head right now.

And it’s becoming more obvious.  It’s hard to hide your memory problems when you can’t remember anything.  I’m oblivious to what has gone before, I risk repeating things or putting my foot in it, like the example above.

Illness takes everything away from you that is precious, independence, skills, talents, memory.  There is no dignity in being ill, just a profound sense of loss.

I grieve.)

Am I Setting Myself Up for Failure?

Goals are targets.  Targets are things that get missed.

Sitting myself down and deciding what I want to plan for and aim for just seems utterly pointless to me.  I know that I will fail and having a list etched in black and white as tangible proof of just what I set out to do but haven’t achieved just overwhelms.  I am defeated before I even begin.

But I also recognise that without goals and plans my life will have no direction.  Perhaps it never has had direction.  All I aim to do is get through each day, one day at a time, with the minimal stress, pain and failure.  However …

I’m not keen on boats and being in them but as anybody who hasn’t even been in a boat before can tell you, it’s best to have a compass.  At the very least, it helps to know which way you’re facing.  And after a compass, comes maps, or charts as they seem to prefer to call them in the nautical world.  You mark where you are and where you want to end up.  You make a plan.

I need a plan if my life is going to find direction, if I’m going to try and be someone, not something, just someone living their life.  But as they want to.  The directions that I go in, that I take are entirely dependent on the winds and whims of other people.  I place pleasing other people far above my own happiness.  And I think that’s something that needs to be adjusted.

It’s been a deep winter for me; I have been lost and absorbed in reflection.  But it has been a good thing.  I know and I can see that I am progressing.  I am making progress.  I don’t think that I’ve recognised that before.  I’m starting to realise that the future isn’t quite the menacing monster that I always believed it to be.  I am beginning to think that I might be able to.

Able to do what?

Well, I guess, eventually, anything that I set my heart and mind to.

But to get there I’m going to need to take some smaller steps.

I can cope with small steps.

And setting goals isn’t just about failure.

I’m not a failure.

I could succeed.

I just need to believe in myself.

And give it a go.

And throw off all the stupid beliefs and complexes that hold me back.

Ballast can be a good thing; it can stabilise you, if you’re a boat.

But there can be such a thing as too much ballast.

It just becomes stuff, junk, weight.

Redundant and not serving any purpose.

It shackles you and helps you sink.

(I do believe in mixing metaphors, it seems).

So my first goal is this:

I need to dare to risk and I need to risk to dare.

(I couldn’t decide which one made the most sense, let’s live dangerously and go with both).

Taking risk has always been something very dangerous and even alien to me.  I actively avoid risk.  Risk is just about setting yourself up for failure.

I need to adopt this new attitude, I need to be brave, I need to believe, I need live.

So this year, I hope to move forward with that motto.

But measuring success, quantifying achievement can be difficult.

How do I know if I’m moving ahead or succeeding?

I need specific goals, targets to aim for.

Marks on a chart, plotting a specific course that I can follow.

I know that I may not always be able to meet them.  But as the Jester Queen once reminded me, many wise people think that failure is only a step to success.

For example, when it comes to blogging, I now have a goal.   I’m going to aim for three posts a week.  Nothing too hard to achieve, if you look back at most months then I’m already meeting this target.

So why set a goal that I’m already perhaps reaching?

I need to do this with baby steps; I first need to confirm to myself that I’m not failing before I take any further, more ambitious steps.

I don’t want to tie myself down though, commit myself to a statistic.  I want to write because I want to.  I don’t want blogging to be about numbers, although numbers can be nice and reassuring.  I’m going to be reasonable on myself.  I’m going to set a goal which is reachable, attainable, possible.  I won’t set myself up for failure.  And especially because of life and health, it’ll be an average that I’m working on, I’ll average it out across the entire year, some weeks the words and posts may come more often than others.  I want to write a minimum of 156 posts this year.  We’ll see how it goes.

Talking of health leads me to another goal, perhaps a harder one to measure or assess.

I want to be honest.  I want to be honest with myself.

For example, when I need to rest, I will rest and when I can’t do something, I will accept that I can’t.  I will listen to my body.

And of course there’s another big thing in my life:  knitting.

How do you set goals in knitting?

Well, I suppose you could aim for a certain number of stitches per week or month.  But that is highly variable, depending on yarn weight and my rather suspect tension.  Five stitches can be very little or an entire row, depending on the project.  And I know that there are people who can calculate how many stitches there are in a particular project but I’m not one of them.  Actually, frankly, I don’t think I’d want to know.  I get demoralised by numbers higher than what I can count to (normally about 30).

Each month, I’m going to write a list of the projects that I want start and finish.

I also want to start a new project from my Knit Now magazines each month too.  As someone pointed on the Ravelry forums, it’s so easy to open a new magazine issue and go ‘ooh’ and promise to one day make this piece or that, but do we ever?

Well, the magazines are sitting on the shelf, the patterns are still there.  And it’s about time I got on with it.  I’ve lined up my favourites in my Ravelry queue and I’ll slowly tackle them.  One project at a time, one month a time.

I’ve already noticed that my knitting goals are also tied to my goal of honesty.  There days and even weeks when I can’t knit as fast or as much as I would like.  It can be bitterly disappointing and frustrating but that’s why I have got to be honest with myself.

I’ve never shared my goals with anyone.  I’m not even sure if I’ve set goals before.  But here are just a few and I know that you’re all prepared to take yet another (long-winded, I’m sure) journey will me.

I wonder how I will do.

Patchwork

Image from Lion Brand Website

Sometimes, I think, patchwork can sound shabby, the idea of cobbling together something, often utilitarian, from leftover scraps.  But patchwork is much more than that.  For example, a patchwork quilt, even though humble in origin and purpose, is so much more than the sum of its parts.  Because, you see, those aren’t leftovers; they’re souvenirs, treasures, stories, memories.  Each of them having so much power in its own right is then carefully lined up with the others, a craft of both eye-pleasing design and technical ability, fine stitches must hold the design together and the design must stand alone and yet be part of every one of its individual components.

I love patchwork, it appeals to me that those squares can unite and become an integral piece, no longer just a blue square or a red square, but part of much bigger design.  I love colour too.  I love history and heritage.  But I can’t sew.

I’ve long wanted a patchwork quilt on my bed, for all of the reasons above and probably many more.  But patchwork quilts don’t make themselves, they need a big investment and commitment of all kinds of resources and as we on the whole are no longer thrifty and making our own clothes, I doubt many of us even have a scrap bag anymore.  This forces you to turn to specifically designed and branded fabrics, which are available, particularly on the internet as fabric shops are now far and few between these days, but at great cost.  Or at least at what I perceive to be great cost.  The colours are dependent on some fashionable palette which has little to do with what colours I actually would want.  I don’t really do psychedelic flower power or twee pastels.  I’d rather there was a middle ground.

If I could get my hands on fabric then what?  Well, as I said, I don’t sew.  I’m also terrified of sewing machines.  (And most other electric equipment).  I can mend things with mismatched thread; in fact I’ve become quite a dab hand at darning socks.  However, this is more motivated by thrifty economy than any particular aptitude or talent.  Patchwork would require both.  In large quantities.

You see, this is what I do.  I dream something up then decide who is the best person to do it.  I rarely count myself.  I can see other people’s strengths and abilities, focussing on those.  I know that someone else could do a brilliant job of it.  I’d just mess it up.  There’s a sort of humbleness in asking for help, in knowing and accepting that someone can do a better job than myself.  I rely on others and I count on their talents.

It’s not likely that I could ever succeed in making a patchwork quilt and frankly, I don’t think that there are too many people around me who could do it either.  Husband sews beautifully but he really isn’t keen on taking on such an ambitious project.  Especially as it is my project.  He feels, for some reason, that if you want something done, you should do it yourself.  He doesn’t appreciate how I evaluate skillsets and find the right or best person for the job.  After all, it normally involves him.

It’s not really laziness.  Just a profound fear of a failure.  Why risk doing something that you know you’re going to fail?  Why risk messing up or making a mistake?  I don’t trust myself.  And failure is unpardonable.

Recently, however, I’ve been thinking and working through a lot of thoughts and fears like this.  I’m starting to realise that there are things that I can do myself and that I might not necessarily be bad at everything I do.  This is quite a revolution which has rather changed the world around me.  A little new, a little different, a little scary but possibly positive, however much I don’t like change.

So I return to the line ‘I cannot sew’.  It’s true.  It’s not just a question of negative perception.  I won’t be able to sew my own patchwork quilt.  My abilities aren’t there for that and possibly never will be, although I really do think that someone my age should get over their fear of sewing machines at some point.

So what can I do if I have really set my heart on having a patchwork quilt?  (Which I have).

Well, there is something.

I can knit.

I could knit a quilt, the quilt.

That in itself sounds quite challenging.  I can’t count, I have a poor attention span and I’m not overly confident about my knitting abilities.

But there, you see, is the wonder of patchwork.

Patchwork is elements, simple elements, brought together as one cohesive design; it only becomes big right at the very end.  A patchwork quilt, however big, is just the size of each ‘patch’ or ‘square’.

I can knit something that small.  I can concentrate on something that small.  I can succeed in making something that small.

I will knit my quilt.

Now, I just need to start saving up for the yarn.  I have some in my sights, in just the perfect colours.

And what could have been unachievable suddenly has become achievable.  I’ve matched the project to my skill levels and I know now that I can approach it just like life, one square at a time.

That brings me to more patchwork thoughts.  Knitting, for me and in these posts, has often been a metaphor for exploring and enabling progress.  Knitting has slowly built my confidence and given me a tangible way of developing my creativity and measuring success.  They laugh about knitting ‘for therapy’ but it has been, I couldn’t have got this far without the metaphoric qualities of knitting and the peace that I get from working one stitch at a time.

It might sound strange but I’ve never been able to ‘see’ the future.  The future is an absolutely fear-inspiring monstrosity that I try to avoid facing at all times.  It’s difficult for me to understand and perceive the future, never mind a future.  Perhaps it comes back to that fear of failing again, the future can be a huge responsibility and it’s definitely something that I believe that I can and will fail at.  I am often overwhelmed too, both physically and psychologically, so living in the present is normally all I can manage.  The future is almost like an unbelievable dream, a mirage. You can pin so much hope in it but it might never materialise.  I don’t like wasting my energy chasing the impossibly ephemeral.  I don’t like trusting and relying on things that perhaps will never exist, that only bring bitter disappointment and loss.  I don’t want to feel either of those things.  I hate them.  I can’t find a future, never mind the future.  It’s too big, too intangible, too much responsibility and too much disappointment.

So I began to think about goals, goals are often tangible, quantifiable.  If you achieve what you set out to achieve then that is success.  You can tick it off and prove to others that you’ve done it, that you have achieved.  Maybe working on goals, something that I also avoid for fear of failure would enable me to slowly get used to working towards that distant, threatening future.   Perhaps rather than jumping into the future, I had to take my more familiar small steps towards it.

Then it clicked.

The future is patchwork.

(That isn’t a trend prediction).

The future is patchwork.

I don’t have to present a complete quilt; I don’t have to make a complete quilt.  Patchwork doesn’t work that way.

Patchwork is the small steps.

I just have to choose a square to work on.

Then work on it.

It’s only when a life is finished that you can hold it up to the light to see the finished design.

I don’t have to have the finished design ready before I start.

I don’t have to commit to all of it.  It can grow from one corner, one piece, one square.  The future can be manageable, broken down into individual portions.  Portions which are small enough to work on, to concentrate on and to put your best effort into.

You can choose the broad themes, of course, before you even start.  Colours, eventual design features, techniques.  Maybe even stitches, if you’re a knitter.  And those themes will repeat in other squares, in other squares of your life.

The future is patchwork.

I can choose one small square and work on that.

I could even work on more than one.

If needs be, I can put it aside and work on another.

Just like I would do, just like I will do, when I knit myself that physical patchwork quilt.

I’ve found the future.

The future is patchwork.

Me Today

Do You Really Mean Me?

 

You know that thing people do when they’re not entirely sure if someone is talking to them or someone else, they look over their shoulder?  I’ve been doing that a lot the last few weeks.  Probably mixed with a bit of rabbit-caught-in-headlights too.  You can’t seriously mean me?  OK, you are.  Panic, doubt, worry.

Losing one’s inner Voice should be a good thing but actually it’s slightly unnerving.  Sure, I’m not feeling guilty all the time over everything (which in itself is kind of weird, partly because I can’t remember before the Voice, it’s been so long) but now I feel guilty that I’m not feeling guilty.  Am I being insincere?  Am I being uncaring?  Am I being selfish?  I’m not sure, surely I should feel terrible when someone goes out of their way for me or does me a favour?  I don’t know.  How do ‘normal’ people react and feel in these situations?  I don’t know!

I feel a little lost at times, almost as if I’ve lost something as important as my compass or even my conscience.  The ground beneath my feet isn’t quite where it used to be.  And that’s going to take some adjusting to.  A lot of adjusting to.  Have you ever had a heavy load taken off you?  You go all wobbly for a bit, it almost feels like you’re still carrying it sometimes.  That’s what I’m like at the moment, unburdened but very unsteady.

But I think that I was living with an impossibly heavy burden because life and relationships are going so much better now that I’m not dragged down, swamped in paranoid guilt all the time.  That kind of guilt, that level of guilt is crippling and it’s not sustainable.  Although I seem to have been carrying it for most of the last two decades.  It destroys your life and you.

Without it, I’m having to get to know myself all over again.  The survival skills that have kept me alive all these years are turning into positive qualities, when I have the confidence to trust them and myself.  I’m probably even coming across as outgoing.  That’s weird, very weird.

Guilt has held me back too long.

Now I need to try to find a life without it.  I’m still a little wobbly.

I’m working on accepting compliments American-style, that is graciously.  Instead of guiltily and self-deprecatingly.

I’m having to dare, to dare believe in myself and my talents (still questioning whether I have any though!), to dare to dream.

If the present isn’t a burden and the past can be forgotten then the future is possible.  I haven’t believed in a future for a very, very long time.  It’s a little scary.  So I’m just going to take it one day at a time.

So when I received an email asking me to guest post on a proper writers community blog, I did look behind to see if they did really mean me.  Maybe they got the wrong email address or something?  No, it was me, they’re talking to me.  Cue rabbit-in-headlights.  I can’t do that!  I’m not good enough!

OK, deep breath.  Accept graciously.  Be accepted.  Panic.  What on earth can this little idiosyncratic waffler contribute?

More panic.

Decide to ignore it for time being.

Post idea slowly forms in head, doesn’t really want to be written down though because I’m probably blocking.

Deadline comes up rapidly.

Have to write post.

Why is that posts are never as good as when they were first drafted in your foggy head at some unsociable hour?

I get husband to proof the post, it would be mortifying if there’s a mistake in this one.  This one post that introduces me to a world of proper writers.

Submit post.

Wait for post to appear.

Realise that with all the different time zones available, I actually don’t know when it’s going to appear.

Spend day anxiously checking website, fretting all the while.

Post appears.

Freak out.

Then grin.

I did it!

I have written my first ever guest post, it’s over at Studio30 Plus.  Let me know what you think.

It’s been quite a journey.

Grateful for the Fire

Coping strategies.  There’s something inherently wrong with that expression.  Strategy, well, you need a clear head and a good idea of what the playing field is for that.  Coping, well, that implies a little too strongly successful management.  But the reality is that coping is just another word for surviving.  We bury our heads in the sand ostrich-style; we duck behind parapets; we get on with life.  Because that is what society expects of us.  And what we expect of ourselves.

I cope.  I survive.  Why?

Whose expectations am I trying to meet?

Only my own.

But coping shouldn’t just focus on success, that sets the bar too high.

A forest can be destroyed by fire.  Yet it survives.  In fact, it can come back stronger.

That’s resilience.

That’s bounce-back-ability.  (Yeah, I’m sure that one’s in the dictionary, dare you check).

Fire has its uses.  It refines; it strengthens; it can actually promote growth.  Many valuable things are proved by fire.

I don’t know whether or not we need it, but we do have fire in our lives.  And sometimes that can be a good thing.   As the song says, it takes a little rain to make the grass grow.

Sometimes the fire comes from other people, people who may even be trying to destroy every fibre of our being, crushing us physically and psychologically.  But to them, I owe a debt of gratitude.  It is because of them that I am who I am today.

I think that I have to conclude that my stubborn streak is one of my best qualities.  It keeps me alive.  It keeps me fighting.  It keeps me coming back.

I doubled my medication, then consulted the doctor, who also switched me to the tablets.  I’ve had some rough days of nausea but there have been definite benefits.  The tablets are more effective, if I thought I felt good on the same dose of liquid then the tablets make me feel even better.  I am confident in an assured way even if I can’t be in a hopeful way just yet.  I sleep well.  I can cope.  Everything has been like water off a duck’s back.  Breezy, my style is breezy.

It was very strange to start with.  It was like being someone I didn’t actually know, like not really being myself.  I’ve grown up with Depression; I’ve never been an adult with clear thinking before, a clear mind.  It’s very strange.  At first, I felt as if perhaps I was still a child in my mind, living in an adult body and an adult mind.  I had to get used to being a ‘normal’ adult, free from all that distorted, negative thinking.  Free from constant, continual guilt.

It’s the guilt that has made the biggest difference, or not feeling it.  I have more time to do things; my mind has more time to concentrate on other things.  It’s like having a massive weight taken off your shoulders.  You kind of stumble around for a moment, missing it, having to steady yourself but you adapt.  I adapted and I’m getting used to it.

The silence in my head.

Silence.

I can’t remember a time when my head was silent.

I don’t blame myself.  I don’t let others blame me.

I don’t agonise for hours about things I have may have said or done wrong.

Things happen, I deal with them, I move on.

Isn’t that strange?  Or maybe you take that as normal.

I don’t.

I’m getting used to it though.

However, medication can’t make all the problems go away.  They are still there, a billion and one different issues and worries that I have very limited control over.  I don’t like that because I always want answers and solutions.  And for all my love of nuance, I like the black and white.  I want things to be clear, I want there to be just one option, just one outcome.  Life is far more complicated and complex.  And sometimes it can be hard to deal with.

 So I freeze up.

I stop, numb, overwhelmed.  I withdraw from creative processes and I shy away from writing.  Maybe I’m just not ready to face the issues, expose them so clearly by the written word.  I stay still, meditating, dwelling on them in an absent-minded way.  Chewing the cud whilst pretending that I’m not.  Distracting myself with tacky television.  Sometimes I can’t even knit, it requires too much of me, sometimes I don’t want to put where I am and what I’m feeling in the stitches.  As if they could be tainted.  Or a permanent reminder of something that I may late wish to completely forget.  I freeze up, do little.  But slowly I find my feet again, I make a little more sense of the riddles that are playing through my head and I decide where I stand on issues.  I come out of it stronger, ready for action.  But I shut down, giving myself the energy and time for psychological matters.

Is that coping?

Perhaps not.  The washing and the washing up pile higher.  I don’t engage with the things that I enjoy doing.  I do little.

Maybe I need to find another ‘strategy’, maybe catatonia doesn’t help.  I don’t know.  Or maybe like fire, I just haven’t learnt to appreciate it just yet.

With fire, I know that I will survive.  I can and will come out the other side a better, stronger person.

It turns out that I don’t need to find myself after all.  I was there all along.  Buried under the debris and chaos that my life and illness have brought but still there.  Existing, alive, breathing.   Just like a small patch of blue sky behind the clouds, I have had glimpses of myself.  Now I know that there was always enough to make a sailor man’s trousers.

I am me.  I always have been.  And I always will be because I will keep surviving, whatever happens.

Related Articles

• Bouncing Back
• A Spoonful of Medicine

Working Out

I’m not entirely convinced that ‘working out’ has the right connotation.  It’s a fairly positive term, indicating a deliberate choice to develop something through to resolution, that is to say, a successful outcome.

Working out does, of course, have other meanings.  In this modern age it is perhaps most often used as an exercise term.  It’s about putting yourself through some routine that challenges you perhaps, but certainly develops you.  There will be effort and strain and the results may not always be tangible, at least not immediately.  I can see how this compares with my psychological health situation.  Perhaps ‘working out’ is an apt expression for what I am going through mentally after all.  The routine may not be as well-defined, moving from one exercise or piece of equipment to another, but my mind does journey from one problem or issue to another, linking them, building ideas, trying to find (hopefully) even a resolution to a situation.  I also hope to come out the other side as a better, stronger, healthier person.

There is a key downside to this physical comparison.  I am a notoriously slow learner when it comes to motion memory.  The steps don’t sink easily into my grey cells and they definitely aren’t keen on staying there.  Learning to knit is a case in point.  I have laboured for many years to get to a point where just the basic skills come naturally, inherently to my fingers and my brain.

So it is psychologically.  I find myself dealing with the same problems and issues time after time.  Sometimes I haven’t learned what I need to do or say, sometimes I forget what I decided was the best course of action as emotions and misguided principles sway me yet again, sometimes life sweeps away the best of intentions or knocks you down with some other crisis or other.

This brings me to another use of the term.  Long again when maths was a compulsory part of my life not just an accidental hazard when cooking, shopping or knitting, I was often required to provide my ‘working out’.  I’ve never been good at this.  I often go straight from beginning to end in one move, somehow instinctually, relying on gut more than rational thought or science.  This doesn’t impress teachers and examiners; they want you to prove how you got to your end and why.  Sometimes in psychological health, you have to slow the journey down, however painful, and break it into steps.  One step at a time, leaving a clear trail of working out behind you, evidence that can be used again in the future, maybe even as protection.

As you may have by now guessed, I have been struggling with my psychological health.  (I really don’t like the expression ‘mental’, I don’t like the added connotations).  It’s funny how as my physical health improves so my psychological health declines.  The reason is simple, I have more energy.  More energy to fret, to worry, to grieve, to pain.  And I don’t necessarily get much choice in the matter.  The nights are full of flashbacks and nightmares and the days are spent moping around feeling miserable and lethargic.

Even after all this time, I still debate which is the worst state: lacking the actual energy to do anything or lacking the motivation (despite probably having the energy) to do anything.  I don’t know.  Both are paralysing, frustrating, laden with guilt.  I don’t like either in my life, there is so much more I could be doing and, more importantly, enjoying.

There’s been a lot of ‘stuff’, as usual, going on this year which I haven’t had the energy to process so when the energy started returning all those issues came flooding in.  My anxiety levels haven’t been brilliant throughout the year but increased energy takes it to new heights.  I’m fighting a lot of old phobias and problems that I have for the most part kept successfully under wrap for the last decade.  It’s a little bit terrifying to be dealing with them all over again.  As well as frustrating. And shameful.  I expect better of myself, I want more control.  I need more control.  This isn’t a pleasant ride.

So while my head sorts itself out (relatively, of course), I haven’t really been writing here.  My head is too full, too busy, too distracted, too overwhelmed.  I’ve had to work through some things, old and new, working out what is real and not real, what is true and not true.  I’ve been trying to find my feet and my place in the world again.

It can be easy to sometimes sweep the horrible, painful, messy debris under the metaphorical carpet but the pieces are still there and the heap just gets bigger.  I bury things, it’s not something I advocate, in fact I tell everyone else that they need to talk, that they must talk.  Maybe there’s a touch of the hypocrite in me.  I tell other people that it’s important to show your feelings and discuss things whilst I keep quiet about the things affecting me and cover up my emotions as much as possible.  Perhaps on some level it is easier.  However, life unfortunately has also taught me that is what people want from me, what is expected.  I try to deliver but the mountain under the carpet sometimes gets a little too noticeable.

So what do I need to do?  Figuratively, I need to sit down and clean up the mess.  I’ve been going through all sorts of stuff, old and new (it’s amazing what you can find under there) and I’ve asked to go and see someone about it too.  That’s a big step.  A very scary big step.  And honestly when all they can promise me is twelve sessions then I wonder if it’s worth it.

But at least it’s encouraged me to return to my old therapy of writing things down.  Of exploring and discussing things in writing.  I haven’t been able to write like that for a very long time; a few years ago someone took my book off me and decided to take umbrage.  It was just as well that the whole thing was a statement of fact and didn’t have a tad of opinion but I guess some people don’t take kindly to the truth, especially not in ink.  It hurt and did a lot of damage.  It’s taken a good few years to build the courage back up to virtually even hold the pen over the page.  But now I have returned, it was the ‘therapy’ that kept me going through quite a few dark patches in my teens and it’s been very hard to deal with the last few years without it.  I need to write.  It allows me to make sense of the world.  However, not being able to write in my own private space also prompted me to take up this blogging adventure, whether that’s a good thing or not I’ll leave you poor readers to decide.

I’m using something online to measure my moods.  The pedant in me questions the accuracy of it and well, asking someone whether they feel hostile is always going to provoke hostility.  It has been interesting though to use it to chart my ups and downs (especially as I thought my mood was fairly static but apparently not) and since I started writing it all out there’s been a definite mood improvement.  This is even more significant as I’ve just run out of that all-important medicine which I have been heavily relying on the last few weeks, especially when it comes to the anxiety (which it’s been barely touching), there was even days when I was taking double doses (I’m sure that the new GP will have something to say about that).

Writing helps me.  It’s a space for discussion, to turn things around and see them from different perspectives.  I can drag a statement from my messed up head then question it, each question prompting more meditation which brings me clarity and sometimes even resolution.  Sometimes it’s simply about getting the words, the ideas, the problems out of my head and onto a page, beyond me, free from me, leaving them there in the twisted loops of ink.  I can challenge myself and provide the working out.  I can move on but I can also choose to come back.  Writing like this has always felt liberating.  It makes me and my head lighter and clearer.

Maybe I am working things out after all.

Oh, and although I like writing, I don’t like carpet.  Never have.  It collects too much dust and bugs and rubbish.  Metaphorically and figuratively.  Can you get mental laminate?

 

 

 

A Spoonful of Medicine

Well, it seems that a spoonful of medicine makes the world go down a whole lot better.

Now don’t get me wrong, I’m not a fan of pill popping.  I’m one of those proud, stubborn creatures who would rather endure something than surrender to a drug ((wo)man up as the Americans apparently say and take the pain is my view, especially if the alternative is needle-pointed).  Besides then what would I do if it got worse once I’ve given up and taken something?  Exactly.  And if it’s just about to get better than it really wasn’t worth being a sissy and taking something anyway.

I know.

I’m stubborn.  And the jury is still out as to whether that’s a good or bad thing.

I’ve had to rethink my attitude towards medicine lately.

Firstly, there’s the matter of ‘supplements’, which as far as I’m concerned is medicine with a small m, it’s fairly natural stuff after all.  A lot of the American ME patients take supplements and the Hummingbird Foundation presents quite a lot of evidence in favour of supplementing in chronic illness.  Like good teeth, taking vitamin pills is something that the Americans are much more au fait with.  The grin and bear your lot, stiff upper lip and all that school of thought isn’t so keen.  Besides, surely if you can eat a good enough diet then what’s the need?

I hate to break it to you all but there’s less and less good in even the healthiest aspects of our modern diet.  In 1940 McCane and Widdowson published their first study into the nutritional content of food.  In 1991 when the fifth study was published, a scientist chap compared the findings between that latest study and the original 1940 one.  It’s not good news.  Whilst we associate boring, unattractive vegetables with the 1940s, they seem to have been much healthier in terms of nutritional value than our modern superfoods (with a price tag to match).  For example, the humble spud had 30% more magnesium, 35% more calcium, 45% more iron and 47% more copper back then.  Scared?

(Actually, I’ve just checked for you.  Potato still outranks blueberry on minerals and vitamins, except Vitamin K.  I’d keep playing top trumps with the groceries but I’m a little tired).

There are also two other factors involved in this supplementing decision, both involving that simple aphorism to ‘just eat a good diet’.  (I’m getting a little suspicious of any phrase that’s preceded by ‘just’).  I can’t afford to.  It’s embarrassing to admit that.  Fruit and vegetables are luxuries on my budget, as are proteins.  They’re all essential but expensive.  I get what I can reduced.  Then there is my health.  It takes a great deal of ingenuity to make our very limited budget tasty (or just plain edible) and ingenuity requires energy.  I don’t have it.  Some days I don’t have the energy to even make plain, boring, simple pasta with commercial sauce.  I don’t have the energy to prepare fruits and vegetables.  Isn’t that shocking?  It drives me mad, I find it embarrassing and shameful.  But that’s the truth.  It isn’t easy to ‘just eat a good diet’.  Not for me.

But the problem with supplements is the cost.  To start a whole new regimen is a serious investment.  A relative kindly helped me out and I’m slowly starting to take some supplements as recommended on the Budget Plan, I’m introducing a new one every two weeks to minimise reactions (and to work out what I’m reacting to).  I can’t say for sure whether they’re helping me, my health is so variable that I’d have to live a day with and without in parallel to tell the difference and that isn’t apparently possible.  Fortunately, actually.  Because I’d just be seriously confused.  And having to live each day twice is got to be too much energy.  And stress.

The ladies in the vitamin shop (it’s one of those chain shops rather than a proper health food shop, I’m afraid) were astoundingly helpful.  I don’t make a lot of sense at the best of times and I kind of make for an awkward customer sometimes.  I found it very amusing that in the end, the closest multivitamin combo to the Plan was the Senior.  Yep, my body has OAP needs.  Great.  I’m also glad that one of them warned me about the um, consequences of taking B vitamins because otherwise I would have freaked.  (You can do your own research there).

So I’m a pill popper now.

My new doctor (I may tell you all about that another day) recommended that I take a Medicine (with a capital M) for the pain.  I was sceptical.  unsurprisingly.  But it seems that I’m secretly a sucker for magic bullets after all so I acquiesced.  They’re tiny tablets unlike most of the vitamin pills and taste of Refreshers.  I’m quite happy to take those.  I took it for a couple of days then realised that there was something odd happening.  It was really weird.  I didn’t know what it was.  I spent two days wondering what on earth was wrong with me.  Then I clicked.  I wasn’t hurting.

I’ve had serious chronic pain for months.  I can’t remember when I last didn’t.  Last year?  On a good day, I’m a 6 or a 7.  On the chronic scale, acute pain has a different scale.  8 is bad.  Very bad.  9 is screaming out loud and giving in to painkillers.  The painkillers don’t really touch it.  There is no 10.  10 is a nightmare not yet discovered.  It could always get worse after all.

My pain is 5 and below.  I’m going to have to rediscover all the different lower stages again.  I don’t remember them.  I still have some pain when I do more physically, the odd specific symptom with pain but I’m not hurting all over constantly.

It’s weird.  Seriously weird.

But I think I could get used to it.

So I’m a pill popper now.

As I was taking all these pills already, I decided that I really needed to get back to my happy pills.  You know what I mean.  Only mine is technically liquid not pills.  I am really struggling, there’s a lot of stress and stuff going on again in my life and well, my chemicals don’t usually work in my favour anyway.  I hadn’t been taking it again because the birds stole my syringe (well, maybe not technically) and then I was on antibiotics for my second tooth (or un-tooth seeing as it had been ripped out) that stated no alcohol.  (What is it about medicines that say ‘no alcohol’ that suddenly make you want to have a drink?!)  They were really nasty antibiotics anyway.  But the liquid has alcohol in (don’t get your hopes up, it’s not worth counting unless you’re already puking on another medicine and it tastes totally vile besides).  So I had to wait.

Once all these barriers had been sorted, there was still the psychological to cross.  One, I don’t like to take medicines.  (That was the original theme of this post, if you vaguely remember).  Two, it tastes so vile that I cannot actually bring myself to make myself take it.  It is the kind of thing that an evil doctor or parent would ram in your gob for you.  You don’t do it to yourself.  Yuck.  It makes my toes cringe.

So I did it.  I took another Medicine with a capital M.

Admittedly, it doesn’t taste quite so bad when served up in a dosing syringe because it kind of hits the back of throat immediately rather than sits in your mouth as you reluctantly suck it off the spoon.  (Toes cringing at memory).

I’ve been using an online mood testing thing which sounds a bit of a gimmick but I thought I’d give it a try.  It’s been interesting, I thought my mood was fairly constant (albeit low) but apparently not.  And when I thought I was having a bad day, I scored my highest score (22%).  Crazy.

So I took one dose of the happy pills (in liquid form) and by the following afternoon I was feeling really weird.  Properly weird.  I couldn’t place what the matter was with me.  I don’t normally feel like that at all.  By late bedtime (my circadian rhythm is up the creek again partying with the grasshoppers), I had this gut feeling that I should retest my mood.  I hit 47%.  (I’d been averaging 11% for most of the week before).  Woah.  No wonder I felt weird.

So I’m a pill popper now.

In liquid form.

It’s amazing what a spoonful of medicine can do.  It certainly makes the world go down a little better.

Related Articles

 

• A Visit to the Dentist
• The Hummingbirds’ Foundation for M.E. (external link)
• What’s in this Stuff? (external link)
• Nutrition Facts and Analysis for Potato, Baked (external link)
• Nutrition Facts and Analysis for Blueberries, Raw (external link)
• Trying Solves Everything
• Moodscope (external link)
• Progress and Happiness
• Overrun