Tuesday, 28 January 2014

coping with pain

I was listening to a podcast the other day, about how to deal with bad things in our lives...  It suggested writing every day for four days for 15 minutes about something that is on our minds.  Doing this helps to process it, and to get it in perspective.

What's on my mind?  That would be pain.

I try to be positive in this blog, so I've avoided talking about the pain much, although it has crept in, like it's crept in to the rest of my life.  However, I did this exercise of writing every day (except for one day when I was in too much pain) for four days.  I thought I'd cobble it into a blog post here.  Why?  Well, because it's been really helpful for me to see how other people experience and cope with pain.  I'm not sure I am coping, but I'm still here, so hopefully someone might find this useful.

Nothing to do with the post whatsoever.

Four days of writing

About nine years ago I had really bad sinus pain, which would come and go, but mainly come.  I went to see the dentist, and the doctor.  I got medication to stop migraines, but it didn't help.  I had a tooth removed, but it didn't help.  I got referred to ENT specialists who stuck a camera up my nose, said my sinuses were too narrow, and diagnosed seasonal rhinitis (despite it happening for nine months).  I got a steroid spray, and got sent home.  I think the steroid spray did help a bit, but I still had massive pain which would wake me up, would disturb my working day, and just took over my life.  Then one night I had pain so bad I thought I might die, and after that, it went away.

It didn't come back again until this winter.  It started off with sinus pain on one side, but not too bad.  I went to the dentist and had some work done, but we couldn't find anything else.  I went to the doctor, and got antibiotics and steroid spray, and that seemed to help, until it didn't.  

For the last few weeks, I have mild pain a lot, and excrutiating pain from time to time, for a few hours each time.  I am taking paracetamol and ibuprofen on a daily basis.  Sometimes it even works.  Sometimes it doesn't.

The pain is incredibly strong, it's constant, and it's sharp.  It feels like the best thing to do would be to crack open my cheek bone and have done.  I pace the floor, I crawl around.  I moan, I scream.  I scare my children silly, and I can't give them any attention, even though they really need my reassurance.  It lasts for anything up to 3 or more hours.  Yesterday it lasted for five hours.  It doesn't feel like it's ever going to stop.  I feel utterly useless, and hopeless, and terrified.  I don't feel like I can beat this pain.  I don't feel like I can bear it.

I called the doctor to ask for more pain relief.  He prescribed Tramadol.  They didn't even touch the pain, just made me feel even more woozy.

I want to feel strong and capable, but I don't.  I'm not capable.  I am scared.  I don't know when it's going to come back, I don't know when, or if, it's ever going to go, and I don't know what's making it happen.

I'm tired out, and exhausted.  I have no mental room for anything but the pain.  I'm letting everyone down, and I'm scared.  What if there's something really horrible going on?  What if this isn't going to stop?

My family keep on asking me what's wrong, and it infuriates me.  What's wrong?  I'm in pain.  It's always in the same place.  In my cheek-bone sinus, unless the pain has ebbed, and then I have a normal headache, and aching jaw and teeth, but still only on one side.

Kenny says it will pass.  That we know that because it has passed before.  But what if it doesn't?  I want it to stop.  I've had big attacks after wine and after chocolate, so I'm not having either, just in case, but I really want some!

I had a day on Saturday with hardly any pain.  Only one attack, and that was mild.  It was glorious.

I keep going back to the doctor and trying new things.  We decided that even though the pain didn't quite fit the diagnosis, we'd assume it was cluster headaches and treat it as such.  I don't want this to be cluster headaches.  I just want it to be a weird thing that happened.  AND NEVER HAPPENED AGAIN.

I tried Sumatriptan tablets.  I took it three times.  It did seem to put a lid on the pain - to stop it at awful, rather than excrutiating, although that wasn't quite the results I was after.  I did wonder if that was just a placebo effect, or if those headaches were just not as bad.  The doctor wondered that too, so he tried me on Rizatriptan which were supposed to act faster.  I tried those yesterday, for the extreme pain which lasted 5 hours.  Today we're abandoning the cluster headaches theory and trying medication for neuralgia.

The pain is really scary, because it's like this big pain monster comes and takes over your body and there is nothing you can do about it.  Like that giant blue thing off Sesame Street.  You don't know when it's coming, you don't know how long it's staying, and you don't know what can stop it.  I need to find something to stop it.

When I'm in pain I can't think straight at all.  I don't really trust my judgement.  I can't think straight with the pain, and I get so befuddled.  What's true?  What's placebo?  What's actually hurting?  Why is it hurting?  I feel like I'm letting everyone down, like I'm letting me down.  Like I can't do my job of mothering, or anything else, and I really need looking after and why can't someone just do that?  WHERE IS THE BLEEPING MAGIC WAND?  I'm crying so much at the moment.  I can't help being scared, but what if that stress is actually causing the pain? 

Yesterday was the first day that the pain didn't let up at all for school pickup.  I should have got other people to pick up the kids for me, but I couldn't think who, and I couldn't bear the idea of all those phone calls.  Before school pickup I spent an hour screaming and crying, and breathing, and trying to calm down, and staring at my duaghter in the hopes that oxytocin could fix this.  When I went to get the children I couldn't stop the tears streaming down my face.  My friends were so kind.  My children are being so good.  I am really grateful for the people in my life.  I am so lucky.

I'm so fed up of this.  I need it to get fixed now.  I am so tired of this pain, and I don't know where the boundaries lie in what is real pain and what I'm creating because of my stress about it.  My nerves are jangling and I don't know where the edges of the pain are any more.  I don't know when I take medicines if they work, or not.  Perhaps it's placebo, perhaps I am so convinced they won't work, in some part of me, that I'm causing an anti placebo?  

People can get so stressed that they create phantom pregnancies, that they create phantom deafness, do you get phantom pain too?  Am I doing this to myself?  Sometimes when the pain is low level I wonder if it's really pain or just echoes of pain.  I despair that I don't trust my own narration any more.

Being debilitated, for four weeks now with this pain has shown me what's really important to me.  It's not what I thought it was.  My main thing, that I sob for not being able to do is this.  I want to be a proper Mummy.  I want to help my kids with their homework.  To cuddle them.  To listen to their stories, so that they know I will always listen to them.  I wish I could do that properly right now.  

I was referred to ENT a few weeks ago.  The doctor is chasing it again this morning.  He says it takes too long.  I'm going into my fifth week of debilitating pain, and I just don't feel like I can take it much longer.

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