What I learned about living with pain from… Frozen

Let it go, let it go….!

Note to self:

Let go of other peoples opinions.  Let go of trying to convince people who don’t want to be convinced that you’re ill. They’re not going to help, it’s a waste of energy.  Move on to discussing it with those who will.

Let go of the people who have no patience for your headache.  Time is short – spend your now-all-too-valuable energy on cherishing those who do.

Let go of worrying about the time stolen by your pain. It’s done, it’s gone. Move on to thinking about the future, and appreciating the (sometimes restricted, but always precious) bits of time you do have to enjoy life.

Let go of the wishes that won’t come true, and that constantly disappoint (for me, that I’ll wake up one day without a headache) and put your effort in to what is practical, what can be done, and move forward.

Have you Let Go of anything?

The cold never bothered me anyway!

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What can you say to someone in pain?

I think it’s probably difficult for people around us to know what to say when we tell them we’re suffering.  Before I suffered with headache and neck pain, I probably said a few of the wrong (well-meaning-but-annoying) things myself.

I am selective about who I share my pain with.  Sometimes, I feel like I’m being boring if I talk about my health.  Sometimes, I worry that people will think I’m whining.  And an annoying comment can really get to me when I’m not feeling at my strongest.

Generally, I just grit my teeth – and remind myself that ignorance was bliss – when I hear any of the following;

I don’t appreciate it when someone remarks that because I’m smiling and happy, that I’m ‘better’.  Being happy is something that I work at in spite of having a headache or a neck pain.  It doesn’t mean that the pain has magically disappeared, it just means either that I’m having one of my better days, I’m coping better or that – through the miracle of make-up! – I look pretty good today.  I hate feeling that I need to be and look miserable in order to ‘prove’ that I’m “ill”!!

It gets me down when it’s suggested that if I took my mind off the pain / got out and did something else / “took myself out of myself” (wtf?), I’d feel better.  It’s true that my social life has taken a bit of a nose-dive since The Headache began, but one thing I have learnt is that I need to do what’s right for me – if I feel like being sociable, I’ll be sociable – if I don’t, it’ll only wind up making me feel more isolated and unhappy than if I had been alone.

Some people seem very confident that based on maybe one or two words describing my condition, they are sure of what I “need” – perhaps the magic cure that their aunt’s cat’s previous owner’s sister used that’s bound to work for me!  I certainly don’t mind discussing treatments that I could look in to – it’s wonderful to know that someone else has suffered with something similar and found something that helped – as long as I feel that they have taken at least a little time to listen to what’s actually happening to me first.

I would advise anyone in pain to do their own research, to connect with others in pain and to learn about what works for them.  But in the first instance, whenever I come across a friend in pain in future, I’ll do what I appreciate most – to simply accept that sometimes we aren’t supposed to speak to “fix the situation” for them, to recognize with that person that the situation is horrible and to let them know that it’s ok to be sad / mad about it.

Pain is lonely, and when you have someone who can just be with you, who can just be understanding, who can even have a laugh at the situation along with you, it’s worth all the gold in the world.

What would you say? And what do you most appreciate hearing?

Why am I so reluctant to change?

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I’ve been trying to change my posture recently. I’ve been trying to be more active. I’ve been trying to change my working habits. I’ve been trying to change my lifestyle altogether. It’s a lot of change to take on all at once, especially when I still need to get the same work done, to achieve the same goals as before

I hate to moan, but it’s hard!  The fact is that I was pretty happy as I was, spending hours hunched over my laptop, lost in my work, going about my life as I did.

So, sometimes, I defiantly work for a little bit longer than I should just because I want to.

Sometimes – just sometimes – curled up on the sofa, I stay in the position that I can feel is starting to nag at me, just because I want to.

Sometimes I stay in bed instead of getting up that half an hour early to do some stretches or a workout, just because I want to.

I am reluctant to change because I didn’t want to change. It wasn’t my decision. I’m stubborn. It isn’t such a simple equation of ‘identify the things that cause you pain’ and ‘stop doing them’.

It’s a process. Change takes time.

The role of hope in pain

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Throughout this whole process since The Headache began, there has been a part of me that has expected to wake up one morning and *kazam* everything is better.  I daydream about what it will feel like to not have any aches and pains. I’ll feel suddenly lighter.. it’ll feel strange because I can barely remember what it’s like not to have a headache.

I’m a do-er.  When I want something to happen, I get to work and I start making it happen.  It’s frustrating for me to not be in control of this one.  I have to resign myself to the fact that all I can do is try, do my best, hope that it won’t last forever and.. wait and see.

Is it worse to hope for change and not get it, or to not hope at all?

The little big things

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I’ve been thinking lately about the role of pleasure in a life of pain.  Get your mind out of the gutter, please – this is not any kind of reference to 50 Shades of Grey or whatever other filth just came to your mind.

I’m talking about the little smile-inducing, endorphin-releasing pleasures of everyday life that can so easily get forgotten when your focus is on what’s wrong.

For me, it’s taking in the gorgeous smell of ginseng in my face moisturiser, seeing fresh flowers on the table, the smell of freshly-brewed coffee and warm croissants filling my apartment, feeling sunshine on my face during those few minutes of the afternoon that it passes my way, painting my toenails a crazy pink… all these little things make me smile.

Each one gives me a little ‘lift’.

And when all these little things add up, maybe it’s the little things that are actually the big things.

Cyber-chondria

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Nice Lady Doctor writes here about cyberchondria, the phenomonen of internet self-diagnosis and goes on to say that “when patients arrive having diagnosed themselves over the internet, I feel as though I have been given a gift.”

Oh, how I wish I had a doctor like that.

The first time I mentioned the “i” word to my GP, he sniggered and asked me if I was worried I had had a stroke.  (Actually, I hadn’t even considered stroke and went straight home to look it up!!)

I am not the patient who has convinced themselves they’re dying of the first Google result they found.  I am the patient who has read all around an issue in an attempt to discover what’s really happening to me.  I am the patient who respects a doctors education and knowledge.  I am the patient who will gingerly mention, after having already given all the information I can offer about my symptoms, a possible diagnosis idea to see whether it will fly…

Invariably, I’ve found it to be met with very little response (and perhaps, I suspect, a bit of eye-rolling after I’ve left the room.. or am I being paranoid?!)

I think it’s fair to say that most people are intelligent enough to be able to handle reading about medical conditions and use the information in a positive way.  My goodness, I don’t know where I would be now without it.

I wish I had a doctor who wanted to empower me to take control of my own illness (particularly as, after eight months, I am yet to receive one single bit of useful advice), and I can’t really see the benefit of not doing this…?

Has pain affected your relationships?

I’ve been very selective about who I spend my time with lately.  Living with pain has made me selfish.  No more the nice girl who patiently listens to everyone’s problems and goes along with what other’s want to do.  For now, it’s all me, me, me.

In a way, I think this has been good for me.

I’ve discovered that there are some people who I’m always happy to see – people who are kind, supportive, willing to listen without judgement.. and there are those who, well… aren’t.  And there are those who mean well, but that I just don’t have the energy for.

I don’t mean that I no longer want to be friends with these people – not at all – it’s just that I don’t have the fight in me at the moment.  I have found that living with pain is lonely.  Sometimes, being with the wrong people can be even lonelier.

There are certain people that I owe a world of gratitude to.  Living with pain really shows you who’s who.

What do you think – has pain affected your relationships?

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