Blocked

I know from my reading of other blogs, that many bloggers at times, sit at their screens desperately waiting for inspiration of what to write about that day.  I don’t do that.  I don’t even actually get as far as sitting at my screen unless I have something specific on my mind that I want to share with you.  Any less than that, and I think that I am being unfair on you, my readers.  But that’s me, sometimes a little different.

Anyway I haven’t been sitting at my screen, and it hasn’t been because I have nothing to say.  Actually if you looked at my ‘drafts’ folder you would see that I have lots of things I want to say.  Getting the ideas is not the problem.  They are flowing thick and fast.  My problem is that I am having great trouble getting from the idea, through to having a presentable post for you.

I guess this is my version of writer’s block.  Probably if we could all meet for coffee (and tea, for those of that persuasion) I could tell you what I’ve been thinking.  But I just can’t get it onto the screen right now.

Other things in my life suggest to me that I am perhaps a little depressed right now.  It’s not crisis material, just time to take care of myself for a bit.  So if I’m not posting at what once was my regularity, then don’t worry, I will be back soon.

“If you get stuck, get away from your desk. Take a walk, take a bath, go to sleep, make a pie, draw, listen to ­music, meditate, exercise; whatever you do, don’t just stick there scowling at the problem. But don’t make telephone calls or go to a party; if you do, other people’s words will pour in where your lost words should be. Open a gap for them, create a space. Be patient.” 

― Hilary Mantel

Teetering On The Edge

This could be my shortest post ever.  Why?  Simply because it is so hard for me to write about.  It’s something that has been on my mind to write about for a number of weeks now, but I haven’t been able to find the courage.  These posts are really hard.  It’s much easier to just walk away but I know that right now I am teetering on the edge, and I need to address the matter.

‘Not Otherwise Specified’

‘Not Otherwise Specified’ is one of those terms that is attached to a lot of mental illnesses.  For me, it is attached to an Eating Disorder.  Yes, one of my labels is Eating Disorder – Not Otherwise Specified, or ED-NOS.

I’ve been carrying that label around with me for a number of years now.  Basically it says that I have a pattern of disordered eating but I no longer meet the physical requirements of another eating disorder like Anorexia, Bulimia or Binge Eating Disorder.  If you have been following my blog for a while you will know that I suffered from Anorexia for a number of years.  Now that my weight is not below the specified limits of Anorexia, and menstruation has returned, I am classed as ED-NOS.

This is where I get a little cynical, because I really don’t think that the fact I have ED-NOS is of any interest to anyone who is involved in my health care.  It is something I carry alone.  It seems to be that the ‘not otherwise specified’ tacked onto the end of a diagnosis is an excuse to ignore.  [My apologies to those health professionals who do not ignore].

That matter of being ignored has left me this week teetering (alone) on the edge.  I tried to get help earlier this week, when I realised the problem, but failed.  The person (a health professional who knows me well) was unwilling to listen.  I have enough self-awareness though to know that I am struggling, and to start to identify why by myself. I’ll try to explain.

While I was in England I was aware that I was having difficulties with food again.  It wasn’t really a new thing but when I am at home, and living on my own, I can just cope with the difficulties and ignore them if I choose.  When I’m suddenly living with other people, it’s not so easy.

One of the things I struggle with is choice.  Give me too many choices of food (like going into a cafe and choosing something to eat) I really struggle.  I go through this whole process of what I would like, what would be healthy, even what others will expect me to choose.  In the end, it is easier to choose nothing because I am getting flustered.  And so I do.  Even though I might be hungry, and I might want something. I have nothing.

Another difficulty I faced (which I hasten to say is no one’s fault, it’s just how it is) was being overwhelmed by too much food.  A large plate of food, even if I’m hungry, just seems too much and I struggle to eat it.  I struggle to know when I’ve had enough, and so I struggle to know when to stop.  Even my perception of how much is actually on the plate is distorted.

These issues may sound small but were affecting me each day as I faced meals, and snacks.  The pressure in my head was immense, and that just made it worse.

Coming home to New Zealand last week, saw me getting more stressed the closer I got to New Zealand.  Not for the same reasons this time, but rather a number of unrelated issues that I knew I had to face, and deal with, when I got home.  In my own way I started to panic and feel out of control.

When I feel out of control I rush to try to place control in parts of my life where it is possible.  A week on I have realised that I took that control I needed by controlling my intake of food again.  I have chosen not to eat as much as I know I need.

This is what Anorexia was about for me, all those years ago.  I felt out of control of my life at the time, so took control of one thing I knew I could.  Food.  And then I also took more control by laxative abuse and over-exercising.  I did it for years and made myself very sick, yet it was something that made me feel better because I at least had control of something in my life.

Right now I don’t have Anorexia and I am not underweight.  I just realise though how easy it would be to slip back into that disordered pattern of eating.  Reacting this way to other aspects of my life, which might seem out of my control, is not healthy.  I know that, and it’s not something I want to do.  But I can tell you that having that small bite (pun intended) of control is completely enticing.

Recovery from an eating disorder would be so much easier if we didn’t have to eat.  Yes, I like food but I hate how it screws me up and how I have to face that disorder several times a day.  There is no getting away from it.  It’s something that I must have in order to live.  If you don’t have an eating disorder, stop and think for a moment how difficult it is to face potentially deadly poison (like say a drug you are allergic to) several times a day.  It is literally like teetering on the edge.

PS.  One of the difficulties about writing this is the fear of advice.  I don’t want any.  I have a pretty good awareness of what is going on and what I need to do, and unless you have been through the same thing, then it is difficult to gauge what would be in any way helpful.  So please, don’t be offended by me saying ‘no advice please’.  I’m simply sharing my experience to raise awareness. 

I haven’t blocked out comments (because comments are always welcome), but in order to protect myself emotionally I won’t be responding to any advice that might be come through in spite of my request.

“It’s dark because you are trying too hard.
Lightly child, lightly. Learn to do everything lightly.
Yes, feel lightly even though you’re feeling deeply.
Just lightly let things happen and lightly cope with them. 

I was so preposterously serious in those days, such a humorless little prig.
Lightly, lightly – it’s the best advice ever given me.
When it comes to dying even. Nothing ponderous, or portentous, or emphatic.
No rhetoric, no tremolos,
no self conscious persona putting on its celebrated imitation of Christ or Little Nell.
And of course, no theology, no metaphysics.
Just the fact of dying and the fact of the clear light.

So throw away your baggage and go forward.
There are quicksands all about you, sucking at your feet,
trying to suck you down into fear and self-pity and despair.
That’s why you must walk so lightly.
Lightly my darling,
on tiptoes and no luggage,
not even a sponge bag,
completely unencumbered.” 

―    Aldous Huxley,    Island

Related articles

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• The Post That Nearly Didn’t Happen (infinitesadnessorhope.wordpress.com)
• Imagined Ugliness  (infinitesadnessorhope.wordpress.com)
• Hope For Discarding The Imagined Ugliness (infinitesadnessorhope.wordpress.com)

Who Would Have Guessed?

 Image credit: CIA World Factbook, via Wikimedia Commons

˜

I tell myself that our planet is not that big.  Daily we are in contact with people right around the globe.  It seems no different from communicating with someone just down the street.  But tomorrow I set forth on a journey of over 12,000 miles (18,600 kilometres for those of us on metrics), flying from New Zealand to England.

My earlier post, …And She Flew told of the adventure I am heading off on, and asked fellow Fibromyalgia sufferers to share any tips they might have for managing travelling.  I didn’t quite get the flurry of advice I hoped for, and that only suggests one thing.  Most Fibro sufferers know better than to fly for 31 hours half way around the planet.

Never mind.  I’m not put off.  This is one of those times in life where I know I could choose the safe, painless, no-risk approach of staying at home.  The problem when I do that is that I miss out on something wonderful. Not to mention someone wonderful.

I’ve been playing it safe for a long time.  When I started blogging just over a year ago, I admit I would have laughed hysterically if you had told me that I would meet a fellow blogger, fall in love, and now be taking off on this trip.  It was the last thing on my mind.  I simply wouldn’t have believed that I would had changed sufficiently, for the good, to be doing this.

For twenty years now I have been battling mental illness, and flying around the world was certainly not one of the things I would have considered doing, let alone been in a state well enough to do it.  What’s more, when I left my marriage fifteen years ago I very firmly decided that I’d had enough of relationships.  I had proven to myself (and anyone watching) that I just wasn’t made for relationships.  I was much better off on my own.  And so that’s what I did.

My therapist is quietly sniggering to himself now (in a nice way) as he remembers some of my first words to him which were along those lines.  I didn’t need anyone, and I simply wasn’t going to go there… ever.

Simple.  Just close down the hatches and keep away from any situation that might lead to an intimate relationship.  It’s easy if you are choosing also to cut yourself off from the world (because the world hurt me too much).  I had what I needed.  I had my cat, my teddy bear and… well actually, that was about it.

I wasn’t someone sitting at home, with the cat and the teddy bear, wishing for a relationship either.  I was happy being single… but perhaps only because I was too scared of confronting myself and my needs, if I let another person get close.

So now I have let another person get close, and actually it feels good.  Actually it’s worth the risk to get on a plane and fly half way around the planet.  It blows me away how much can change when I learn to take things one day at a time, when I find the will inside of me to trust another person, and most importantly learn to trust myself for perhaps the first time in my life.

♦

“So we shall let the reader answer this question for himself: who is the happier man, he who has braved the storm of life and lived or he who has stayed securely on shore and merely existed?” 

―    Hunter S. Thompson

♦

“Risk anything! Care no more for the opinion of others … Do the hardest thing on earth for you. Act for yourself.”

―    Katherine Mansfield,
Journal of Katherine Mansfield (14 October 1922)

Related articles

• …And She Flew (infinitesadnessorhope.wordpress.com)
• No Regrets Now (infinitesadnessorhope.wordpress.com)
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Don’t You Hate It When…?

It’s bad enough when you miss the birthday of someone close to you, but worse? When you miss your own birthday.

Yes, 7 March was my 1st blog birthday… and I missed it. I’m going to forgive myself though. It’s been one of those weeks. Actually it’s been worse than just one of those weeks, and when I look back it really doesn’t surprise me that I missed it.

So Happy Birthday, me… or at least Infinite Sadness… or hope?

If you want to know what I’ve been doing over the past year, there are 211 posts to choose from. More recent?  Read on.

I guess I’ve learnt lots in the past 10 days.  I wish there had been an easier, less painful (in more ways than one) ways to learn, but so often it seems I have to put myself through hell before I get the message.  Have I got the message yet?  Well, I’ve got some messages but I’m sure there is still more to gain from it all.

When I wrote The Black Mark Against Mental Illness a while ago, I wrote about the stigma of mental illness that people with fibromyalgia seem to both experience, and perhaps contribute to.  At that time I found that there was a big voice from fibro sufferers who were not willing to accept that there is an emotional and psychological aspect to fibro.  In my reading I found they were adamant that fibro is a solely physical illness and that the psychological realm just doesn’t come into it.  “This is not all in my head” was something I read over and over.

I disagree.  Should I say that I disagree as far as my own fibro is concerned.

I know full well that my emotional and psychological well-being has a direct impact on my physical health, particularly in terms of my fibro symptoms.  Disagree if you like, but the issue of whether fibro is ‘all in my head’ has direct relevance.  I wouldn’t go so far as to say all, but what goes on in my head definitely affects my fibro symptoms.  If your fibro doesn’t work that way, then I say lucky you.

This doesn’t at all mean that my fibro is not important.  It doesn’t mean that my suffering is not real.  It doesn’t mean that I don’t need doctors to take me seriously. Those symptoms still exist, but now I have some understanding of perhaps why I suffer more on some days than others.  For that fact, I am happy to accept that fibro, for me, is connected to my mental well-being.  I hasten to add thought, that isn’t the whole story.  I’m sure there are physiological issues going on too.  It is after all, a complex illness.

This past week has seen some big stressors in my life, most of which I am unable to go into the detail of out of respect for others.  Put it like this though, when I stood up for something I strongly believed in and got some serious opposition from people who matter a great deal to me?  Within hours, my body started to react with pain.  That night I could actually feel the pain growing up my body, and at that point was helpless to do much about it, other than prepare for the worst.  It was bad enough that I was emotionally upset by an argument, but now my body was reacting too.

The stress of the week continued with me trying to support and help someone else close to me, who really didn’t want to accept the help.  An independent person, it was too hard for her to accept help that she probably needed.  The crazy thing was that by now I was getting out of my bed to go support her, only returning home to climb back into bed.  Yeah, that is crazy isn’t it?

And even crazier?  In looking back actually, I suspect I was sicker than the person I was trying to help.  But as I ran around after her, I was frustrated that she couldn’t see I was sick.  What was I expecting?  Was she meant to be a mind reader?  I was setting myself up to be further stressed.

Ten days of this has done nothing for my fibro symptoms.  It also hasn’t helped my auto-immune symptoms which seem to be springing to life the more I go on.   My specialist told me this week that all of my symptoms are too many to indicate exactly to her what is going on in my body, and that I would just have to live with it.  At least until I return from England, anyway.

I didn’t really appreciate her “just live with it” approach but I am inclined to wonder whether the psychological stress I have been under is not also playing a part in my Graves’ symptoms.  I think it’s time to go back to bed.

As I wrote yesterday, in Invisibility, I was feeling invisible to so many people in my life, perhaps mostly because it seemed like no one had any comprehension of how sick I was feeling.  That’s not entirely accurate because I know there were friends who had some idea, but it is the reality of what I felt.  Apart from hanging a sign around my neck pronouncing me ‘sick and stressed’, what exactly was I expecting?

That’s why I realised that I needed to stop being invisible to me.  I need to listen to my body, and my mind.  It actually doesn’t matter that it was my blog birthday this week, and I missed it.  And if someone really wants to refuse the support I have offered, why do I fight it?  Just go back to bed.  Or better still, don’t get out of bed… until I’m ready (and my body is ready).

As for standing up for things I believe in, that hurts, but I’m not going to stop doing it.  It’s part of who I am.  Just as part of who I am is accepting that it’s not just my mind that reacts to external stressors.  My body does too.  Right now I’m stuck with that, so the sooner I accept it and adapt my life to allow for it, the better.  There is so much more important than a blog birthday.  Maybe I’ll do that one next year.

♦

“Our minds are susceptible to the influence of external voices telling us what we require to be satisfied, voices that may drown out the faint sounds emitted by our souls and distract us from the careful, arduous task of accurately naming our priorities.” 

―    Alain de Botton,    Status Anxiety

Related articles

• The Black Mark Against Mental Illness (infinitesadnessorhope.wordpress.com)
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Definition of Stupid

Believing everything you read on Social Media is true.

Social media is not Academia, and so everything that is said, is not backed up by 20+ references to prove it is fact.  It is simply a reflection of what someone wants to say.  And yes, even what I write here should not be taken as fact.  Is the above definition really the definition of stupid?  If you take the time to check it out in a Dictionary, for example, you will know that in fact this isn’t the definition of stupid.

It’s my definition of stupid for today, simply because it is something weighing heavily on my heart today.  It doesn’t make it true, and if you choose to believe that it must be true because I said it, then (I’m sorry but) you are stupid.

According to a more worthy source of factual information than me, The Oxford Dictionary, stupid is defined as:

lacking intelligence or common sense (1.)

Or if you don’t want to take such an academic approach, The Urban Dictionary, which for all it’s downfalls makes some valid points, defines stupid as:

Someone who has to look up “stupid” in the dictionary because they don’t know what it means. (2.)

The problem with stupid (and I’m thinking of this in terms of social media) is that stupid takes what it reads on social media, believes it to be true, and then makes judgements about people on that basis of that which is probably not true.

I’ve written about the tendency to judge people before, so I don’t want to repeat myself.  Personally I don’t believe I have the right to judge other people.  It’s simply not my job as a fellow human.  I am just as flawed as the next person, and therefore have no right to stand in judgement.

Of course you may not feel that way, and I have no right to expect you to think as I do, but if you’re going to judge a person, at least check your facts.  What is said on Facebook, Twitter or even on WordPress is not necessarily true.  It maybe completely fabricated, and by your choice to blindly believe what you read, you run the risk of creating a whole lot of hurt.

Image credit: FB- Peeling Away The Layers

If we want to stand in judgement of other people, let’s at least make sure we have our facts right.  Let’s at least make sure we’ve given the person we’re judging the opportunity to speak and that we’ve heard all of the story.

When we don’t, the risk of losing what is so important to us is much greater than we stupidly think.

“Evil isn’t the real threat to the world. Stupid is just as destructive as Evil, maybe more so, and it’s a hell of a lot more common. What we really need is a crusade against Stupid. That might actually make a difference.” 

―    Jim Butcher,    Vignette

Related articles

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…And She Flew

Image credit: whakaangi.co.nz
.

Remember the kiwi? It’s not a piece of fruit (that’s a kiwifruit) but a small, flightless bird. Our national icon here in New Zealand, s/he lives in the undergrowth of the New Zealand bush doing all s/he can to avoid predators. S/he is an endangered species, and that must be hard when you’re a bird… and you can’t fly. What’s more, as someone pointed out to me recently, s/he also can’t swim. Actually it’s amazing s/he has survived, against the odds, for so long.

According to the Department of Conservation, who work to protect this, and other natural treasures here in New Zealand, there are only about 72,000 of these birds left.  Actually that’s not many, and you won’t see them easily when you come here as they are also nocturnal birds.

Even if you’re not from New Zealand, it’s hard not to be taken with the kiwi.  A bird that can not fly, that hangs out in the dark, and apart from an impressive looking beak, does not have much with which to defend itself.

The kiwi (bird) is where some 4.5 million New Zealanders take their name.  We are also known as kiwis, and personally I’m honoured to be represented by such a bird who faces the odds, time and time again.  That kiwi (the bird) can not fly… but this kiwi (me) is going to fly.

♦

“Come to the edge”, he said.  We are afraid. 

“Come to the edge”, he said. 

They came.  He pushed them, And they flew…”

   – Guillaume Apollinaire    

♦

My favourite quote (above) reminds me that sometimes, even when we are scared, we need to fly.  We have to take a (hopefully somewhat measured) risk and leap into the unknown.  And there we fly…

In five weeks, I am going to get on a plane (actually several) and fly half way around the planet to be with someone I love.  Standing on the edge, there are risks, but I’ve measured them and believe they are worth it.  Aside from the risk of flying half way around the planet to be with someone I haven’t met in person before, I also have to face 31 hours of travelling time.  Yes, that’s right.  31 hours.  That includes stops in Sydney, Bangkok and Dubai before I get to my destination in England.  And that is the shortest possible trip I could afford.

31 hours of sitting on planes, and passing time in airports is not exactly many people’s idea of fun.  The most I have ever done is 15 hours and that was hard enough.  Now I am doubling that, and have to factor into the equation my fibromyalgia.

Anyone with fibro, or probably any type of chronic pain, will be wincing at the idea of this.  It is a huge undertaking when sitting for any extended length of time will see my body seize but, and walking through airports and waiting in lines will see the fatigue set in.  This is not going to be easy, or even pleasant.  But that has been part of the weighing up the risks for me.  I expect by the time I get to England I will be half dead, but it’s worth it.  I have no doubt of that.

I have done my homework on what I should expect of my body but  I admit I haven’t yet considered too closely what my brain function might be like by the end of this.  Will I be able to think straight?  Unlikely but Frank knows to expect a wreck off the plane.  If anything can test our commitment to each other it will be the state of me after that 31 hours.  While it would be nice to think I’ll be looking my best, I know I won’t be.  That’s just how it is.  Sometimes that’s life.

The difficulty with fibro is that I really can’t accurately predict how I will be.  I know sitting immobile is a factor, as is the difficulty of sleeping over that time.  I would love to have one of those seats where you can lie down properly to sleep, but they were way too expensive.  I also know walking long walkways in airports might be difficult.  But I might handle it all really well.  Let’s hope.

Meantime I did some reading.  7 Keys to Savvy Traveling with Fibromyalgia by Tami Stackelhouse, a Fibromyalgia Health Coach provided some interesting food for thought.  Some of it I admit I struggled with though.

One of the first ideas suggested was to use wheelchair assistance in airports.  Hmm.  It might be a good idea, because usually there is a lot of walking in airports, but I’m not ready to face a wheelchair just yet.  I’m struggling enough with hope right now (see Fatigued Hope), without going that far.  Maybe that’s pride, maybe it’s stupidity, and maybe it’s maintaining some sense of self-empowerment.  I think  I need that right now.

What I need from my blogging friends is to hear what works for you.  Have you travelled long distance with fibro?  What did you do to make this as easy, and preferable pain-free, as possible?  And if I wake the morning of departure to a fibro flare, how would I be best to manage that?

I am going to step to the edge, and fly (unlike the kiwi).  Whatever the pain, I know this is worth it.  But anything I can do to lessen that pain, would just make damn good sense.

“I am not the same having seen the moon shine on the other side of the world.” 

―    Mary Anne Radmacher

Related articles

• Facts about kiwi  (conservation.govt.nz)
• 7 Keys to Savvy Traveling with Fibromyalgia (myrestoredhealth.com)
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Where Is My God When It Hurts?

Last week I wrote about struggling to find hope in the midst of the chronic pain and fatigue of  fibromyalgia (see Fatigued Hope). I admit I’m still battling this one. I don’t think there is a simple answer, yet I am frustrated by having previously written about hope, but not being able to find it to apply in this situation.

A number of people commented, in relation to that post, that I should perhaps look to my spiritual beliefs. Hence my question: where is my God when it hurts? The question is phrased as it is because I believe that spirituality is an individual thing, and as such where your God is when I hurt is not actually of much significance to me. It is in terms of how you might find comfort in your trials, but for me personally, it only about my perception of who my God, or higher power, or whatever I like to call it, is for me.

When I google the question ‘Where is God when it hurts?‘ I find that Google kindly has about 95 million responses for me including a book title, by that name, by a Philip Yancey… which I’m sure my father owned.  I suspect I would have come across it as I dealt with Dad’s enormous collection of books after his death.  Maybe I should have stopped to read it, although I would have been there forever if I had taken that approach to every book that caught my eye.

Quite frankly the answer to all my questions was probably in my garden shed (that’s where Dad kept his library), or maybe I could say right under my nose.  What’s more, if my father had been alive, he would have been quick to answer my question for me.  He was, after all a Christian minister, well versed in theology and my blief in God is based on the Christian god figure (although not some of the organisational aspects of churches).  But even if he had been here, that would have been his answer, not mine.  And I suspect I would have been still wondering.

The reality I learnt long ago is that other people’s views on spirituality actually don’t answer my questions.  They might provide the answers for them, but I have to find my own answers.  So I’m not even going to bother with Google’s suggestions, or what I know would have been Dad’s.

I believe that religion  serves a different purpose for each person.  Nothing is right or wrong, as we are each different people with different needs.  My own beliefs form a basis for how I treat other people, and I think I’m slowly forming a means of how I treat myself.

Translating that into hope in spite of trials is not something I have yet achieved.  Oh, I was trained well and can quote a million Bible verses at myself about having hope and trust in the God I was brought up to know, but that doesn’t actually cut it for me in terms of finding purpose in my suffering.

I find it incredibly frustrating when I am told that everything happens for a reason.  Maybe it’s true, maybe it isn’t, but it seems an incredibly cold way of comprehending, and giving reason to why some people suffer so much.

This posted started in terms of my own struggle with pain and fatigue.  I know that it is nothing compared to what some people suffer each day, and actually in that I can find a little peace for myself.  I can be thankful for what I have and have not.  But I will find it incrediblyy annoying and frustrating if you tell me to find joy in my pain, just because my Bible tells me to.  It just doesn’t work that way for me.

A book that I have found useful over the years, mostly to dive in and out of because I have yet to read it cover to cover, is Harold Kushner’s When Bad Things Happen To Good People.  I like this book because it is written by someone who has had plenty of bad things happen.  He knows suffering yet he still somehow believes in who he sees as God.  Here is an excerpt:

“I have to believe,” one friend said, “that everything that happens in life, happens for a purpose.  Somehow or other, everything that happens to us is meant for our good.  Look at it this way.  You were a pretty cocky guy, popular with girls, flashy cars, confident you were going to make a lot of money.  You never really took time to worry about the people who couldn’t keep up with you.  Maybe this is God’s way of teaching you a lesson, making you more thoughtful, more sensitive to others.  Maybe this is God’s way of purging you of pride and arrogance, and thinking about how you were going to be a success.  It’s his way of making you a better, more sensitive person.”

 Harold Kushner - When Bad Things Happen To Good People  (p. 30,31)

It’s a pretty common way of thinking.  Suffering is God’s way of teaching us a lesson and making me a better person.  Me?  I hate it when I am told that.  Everything in me gets angry because I think things like ‘What was wrong with me before?‘ and ‘Why do I get this lesson in suffering when others get off scot-free?‘.  Oh, and,‘Why does God hate me so much?’

That frame of thinking is easily said to another person (sadly) but for me it makes God into a hateful , hurtful and vengeful god.  And that’s not who my God is.  My God doesn’t want me to be hurt, and has great compassion for me and all others.  If it works for you, that’s great but it doesn’t work for me.

Having said that, I know what doesn’t fit for me but I still have no answers in terms of needing to find hope in chronic illness.  I still need to find some purpose to it, and I still need to find a way of accepting it as my reality.  Some years ago I came to the point where I could accept my mental illness.  It’s not that I liked it, but I could accept that it is part of me and what makes me who I am.  I can even see some purpose to it in terms of sharing my experiences hopefully in a way that will encourage others.

But accepting the physical illness is not easy for me.  I’m struggling to find purpose in day after day of pain and fatigue.  I struggle to live with it because my life becomes so impaired by it.  I also struggle with the invisible nature of it, which means that people around me assume and expect me to do more than I am physically capable of.  Yet I want to be able to do those things.  I don’t want to be so limited, but I also need compassion from people.  If I accept these illnesses and the chronic nature of them, I feel like I am giving in to them.  I don’t want to do that.

So where is my God when it hurts?  Actually I’m not sure.  Quote the Bible at me, and it will leave me cold.  I know all that in my head, but my heart struggles to find personal purpose and hope.  I admire people who are able to take their faith and apply it to their current situation, but right now that isn’t working for me.  I guess I’m still a work in progress, and I hope my God treats me gently.

I finish with something my mother used to say to me when I was young.  I had no idea what it meant, but somehow it’s still stuck in my mind.  She just used to quote the first part.

For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.

 - 1 Corinthians 13:12  – King James Version

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Remember You’re a Womble (Or Whatever You Are)

If you didn’t have your childhood in the 1970′s you might not remember The Wombles. If you don’t remember, it’s worth taking a few minutes to watch this clip from the first episode.

The Wombles were fictional pointy-nosed, furry creatures that lived in burrows on Wimbledon Common, where they aimed to help the environment by collecting and recycling rubbish in creative ways. At just seven when this series came out, it was perhaps the first time I had heard of recycling and you know what? The Wombles made it fun.

My favourite Womble was Orinoco.  He was a little bit lazy compared to other Wombles, but still as honest and kind-hearted as the rest of them.

There were many songs but my favourite was Remember You’re A Womble.  A reminder to be true to your Womble spirit.  I am not ashamed to admit that I can still sing this, to the horror and amusement of my teenaged nephews.

But the purpose of this post is not about Wombling, but about remembering who I am.  I take a massive leap from the environmentally friendly Wombles to introversion.  Mostly because I can.

I am an introvert.  That said, I often choose to take on the role of an extrovert, and therefore am assumed to be an extrovert.  Actually I think this is the case for many bloggers, and there is nothing wrong with doing this.  The problem becomes when it is assumed you should always act like an extrovert.  Actually there is nothing wrong with being an introvert.  It is not a disease.  Personally, I love it.

I found this description of introversion on Psychology Today:

“If a crowded cocktail party feels like a holding cell to you, even as you gamely keep up your end of the chatter, chances are you’re an introvert. Introverts are drained by social encounters and energized by solitary, often creative pursuits. Their disposition is frequently misconstrued as shyness, social phobia or even avoidant personality disorder, but many introverts socialize easily; they just strongly prefer not to. In fact, the self-styled introvert can be more empathic and interpersonally connected than his or her outgoing counterparts…”

Unless you take the time to really get to know me, I don’t come across as shy, but then being an introvert is not about being shy, even though that is how many people see it.  Back in the days when I was working full-time I was working as a corporate trainer.  I spent my days in front of a group of people, facilitating training.  Actually I loved public speaking and got energised by it.  One of the most fun things I ever did was compere a fashion show (who of my friends remembers that?).

What made it possible for me to do those things was that I would go home at the end of the day and recharge… on my own.  It doesn’t even mean I lived alone, but time alone was my opportunity to plug in the batteries and let them recharge over night.

As an introvert I do a lot of thinking, perhaps rather than a lot of talking.  I don’t need to talk through what I’m thinking.  I don’t necessarily need to get recommendations from those around me to be able to make my decisions.  As an introvert, I tend to get distracted and side-tracked by others and am much better to do my thinking alone.

To people who don’t work that way, probably extroverts, that is just plain weird.  It’s not though.  It’s simply how it works best for me and millions of other introverts.  As I said before there is a tendency to think that introversion is about shyness and being a quiet person.  It’s not.  I am just as capable as the nearest extrovert of being ‘out there’ and loud.  But it’s not where I get my energy and it’s not the real me.

Recently someone who I thought knew me better, accused me of having not thought through a decision I had recently made.  He drew that conclusion simply because I hadn’t discussed it with him in the way he was expecting.  Actually I had spent hours thinking the decision through, and also listening to what was being said around me by a number of people (including things that he had said).  That’s just how an introvert will work.

Remembering you’re a Womble connected so well to this, because when he said this I thought I had done something wrong.  I hadn’t.  I was just being a Womble (and a proud one) or an Introvert.  The way I function and operate is not wrong, simply because it is different to anyone else.  It is simply being true to who I am.  It’s a shame if other people can’t accept that, actually, we are all different… and that is good.

And in case I’ve left you wondering…  I’m not saying that Wombles are introverts, although they do tend to be wary of humans.  I know the feeling.

♦

“Solitude matters, and for some people, it’s the air they breathe” 

―    Susan Cain

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Is This Significant?

Image courtesy of [Danilo Rizzuti] / FreeDigitalPhotos.net

 

I’ve been looking around the blogosphere and it seems that 200th post is significant, so let’s be significant today. I’m not entirely convinced that it is a point worth noting, after all it simply says I’ve pressed ‘publish’ 200 times. So what? If I’m honest, quantity has never been important to me. What matters to me is quality?

Every time I pressed ‘publish’ did I have something worth saying? I have absolutely no desire to simply meaninglessly fill your in-box, but am much more interested in knowing whether what I have to say each time I press ‘publish’ actually makes a difference.

So far, to my knowledge WordPress hasn’t found a way to let me know that.  I have numbers coming out of my screen at a rapid rate, and while WordPress also can convey ‘comments’ and ‘likes’ to me, they can’t actually tell me if I made a difference.  Did what I say, inspire or encourage?  What about all those who chose not to ‘like’ or ‘comment’?  I often don’t feel like doing either myself, but I know that a post can have made a difference without that.

If you’re looking for a great 200th post, this one, My 200th post from aliceatwonderland is great.  As usual with her work, I laughed my way through it, and I know I could not repeat, or even replicate her imagination.

Meanwhile I keep pondering.  Numbers have not meant a lot for me for a while now, and blogging is no different.  You see after years of thinking the size in an article of clothing meant the world, and the number which shows up on the scales is the most important thing that day, I know that numbers just don’t matter.  Numbers meant a lot when I had anorexia but now I know I’m better to ignore them and focus on something else.  Numbers are after all, completely relative.

The last time I stopped and thought about numbers here was when I wrote my 50th post, Lessons For Cate So Far…  It was useful for me to think about what I had learned from the blogosphere in the time I had been involved.  At this point, what is relevant to me is what I have learnt about myself as a blogger.  There’s a couple of things worth noting.

I’ve realised that advice is not the thing I’m interested in.  That is, I’m not blogging to give you advice.  And I’m not blogging to get advice.  I’m neither experienced, or trained enough to offer advice to anyone and therefore I would be insulting your intellect if I did.  There is, sadly, plenty of rubbish on the internet, blogosphere included.  That’s okay if that is what you want but I really don’t have any passion for adding to it.  All I want to do is share my experience and my opinion in a way that is hopefully helpful.  None of it is fact, or necessarily right or wrong.  If readers manage to draw their own conclusions from what I have written then I am a happy woman.

I admit too that I’m not even that interested in drawing advice.  That’s not why I share.  If you want to give me advice, fine but what I am more interested in hearing is about your reactions.  Again, there is nothing right or wrong.  You don’t have to agree with what I have said (I’m not used to that anyway), and actually I welcome constructive dialogue.  I won’t be upset if you disagree.

The other thing I have come to realise about myself as a blogger is that I am passionate about being careful with other people’s work and respecting the effort they have invested.  The amount of times that bloggers break copyright that is atrocious, and often it is probably because bloggers haven’t taken the time to find out the rules. Ignorance is not an excuse for breaking the law.

I’m not about to give a lesson on copyright except to say check it out from a reliable source.  Copyright is not only illegal, it is also a hard slap in the face to our fellow writers and artists.  It’s not difficult to respect those people enough to either not break copyright, and at least ask permission before we use their words or images.

I am not aware so far of anyone using my material in this way, and that’s not why I object to it.  Instead it is because I see it regularly on blogs I read, and have come to the conclusion for myself, that I will not follow blogs where I see them consistently break copyright.

Actually I don’t follow your blog to read what someone else says anyway.  I’m interested in what you have to say.  For the same reason I rarely chose to read re-blogs. And if I don’t stand up for the rights of other writers and artists, then I fail to be honest and fair.  I’m not telling you this in order to tell you what to do, but rather to explain my own choices.

♦

“We have to dare to be ourselves, however frightening or strange that self may prove to be.” 

―    May Sarton

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Love Is… (A Guest Post)

Over time I have written on several occasions about love, or my perspective on love.  You can read some of that in What Love Isn’t and How Do I Love A Human?  I have to say that I’m no expert on love, and have screwed up my fair share of relationships, including intimate, family and platonic, along the way.

This account of love is written by someone who means the world to me.  I am learning to allow myself to love again, and he is helping me.  This is very personal to me but I am choosing to share it because when I first read it, I had one of those ‘wow!’ moments.  Why?  Because someone would write that of me. I am completely honoured and very happy to be part of this love.  And finally, because everyone describes love slightly differently and it’s good to be able to share.

I have spent most of Christmas and New Year forcing myself apart from someone for various reasons to do with my self-esteem. I have pushed them away as hard as I could, and they stood by me every inch of the way. Why? Because she loves me.

Love is not head games. Love is not messing about with people’s emotions.

Love is when you dig yourself the deepest, darkest hole you can think of, and hide yourself in it, and they wait. Quietly, patiently, they wait. They see that you are in pain, and they stay at the edge of the hole, providing you with the only source of light you have. Love is when they continually reach out to you even when you don’t and can’t answer them. Love is kind and patient messages telling you how much you mean to them, even as you’re retreating inside yourself to battle with the darkness that festers inside your heart. Love is recognising that someone is engaged in a war with demons they’ve fought their entire life, and instead of thinking they can cure your problems, love is waiting in the shadows as you take on the beast yourself. Love is knowing that the only person who can win this battle is me, and being kind and wise enough to understand that.

Love is sending someone a message when they are at their absolute lowest ebb, and knowing exactly what to say. Love is sending someone a crystal for their birthday and sending them a message reminding them that they held it, filled it with their love, at the same time that you’re actually holding it in your hands. Love is synchronicity. Love is a connection at the quantum level, knowing that you are in someone’s heart even though they’re half a planet away.

Love is spiritual, not chemical. Love is knowing, not wondering. Love is the realisation that someone loves you so much you can feel it from the other side of the world, not wondering if the person in the same room as you is even aware that you’re there. Love is having the faith to wait as someone makes mistakes, falls over, breaks their wings, gives in to the darkest self-destructive impulses and does their best to destroy something special and beautiful.

Love is not thinking that you can save someone from their problems. Love is knowing that the only person who can save you is yourself, and providing support for a lifetime of healing, regeneration and self-discovery. Love is knowing that the person you’re with is a work in progress, something slowly evolving into someone greater. Love is not being afraid of that change, but embracing it, celebrating it. Love is not thinking that you can be the one to change or fix someone, love is the joy you feel as you watch that person struggle, fall, and stand up on their own, knowing that your presence fuels their fight.

Love is realising that the body is a shell, a vessel, and that what’s inside is by far what matters most. Love is when your very soul feels connected to another in a way that can’t be broken. Love is when the colour of someone’s heart is more important than the colour of their hair, when the size of their compassion is more important than the size of their nose.

Love is improbable, almost impossible. Love is standing in the middle of a field on the sunniest day with your eyes closed, bathed in a billion rays of light travelling at 186,282 miles per second, reaching out, and taking the single photon that was meant for you. Love is that improbable, and that wonderful.

Love is looking into the darkest recesses of someone’s soul, seeing everything that is there, and still loving them. Not despite their imperfections, problems, issues and pain, but because of them.

Love is reaching out in the most random ways, knowing that what you’re doing will touch someone’s heart. Love is sending a box of teabags around the world to someone just because you know they love them. Love is knowing the smile that lit up their face when they opened the package, and love is knowing that you put it there. Love is realising that to some people, the smallest gesture is infinitely more significant than the grand one. Love is knowing that some people want for nothing more in life than to be held during the dark hours, and that this is more important than expensive gifts, shopping trips, declarations of affection.

Love is protecting your heart with a lifetime’s worth of barriers and obstacles, accepting that nobody will ever make the effort to penetrate them, and then feeling breathless as someone not only makes the effort, but sees right through them as if they’re not even there. Love is when that person finally reaffirms your belief that everything is intrinsically good by seeing into the depths of your soul as easily as if they were looking through a glass of water.

Love? Love is knowing that every word of this was written for you, Cate.

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