Thursday 14 June 2012

GP Chronicles

May I say again that my new GP rocks?

To those of you with competent GPs this post might seem really boring. It is just a summary of a GP appointment. I have never had a good GP before and I know a lot of folk who are disabled or living with chronic illness do not have a GP who understands how complex, exhausting and paperwork-laden that can be.

Today's appointment (because you are all desperate to know) was about my tummy meds. I've been on metoclopramide to increase my gastric emptying and was helping with the worst of the pain / nausea. Great, except that it was making me twitch/tremor all over the shop. It's been a month and I have a general rule with medications that I stick side effects out for a month if I possibly can to see if they'll die down (obviously, this is not always possible so you have to use common sense - when I tried trazodone ages ago it made me throw up every day for a week, so I stopped it then). For example, the first few days of taking this drug I had an awful taste in my mouth. I'd had it before and knew that within a week it should go, which it did. The twitches didn't and in fact have been getting worse, so lovely GP has taken me off them because of the risk of this being the start of a movement disorder. Metoclopramide is one of few options for gastroparesis/delayed gastric emptying that is now off the table. There was a good chance of this anyway, as a young woman but I'm a bit bummed anyway.

Then we had a discussion (yes, a real discussion where she listened to me and everything) about the relative benefits and risks of domperidone vs prochlorperazine. She went with prochlorperazine because domperidone has risk of similar movement disorders to metoclopramide (although the risk is much less). I pointed out that the endoscopy had confirmed her suspicions of delaye gastric emptying and that domperidone is a prokinetic. She went to make a prescription for domperidone but the computer told her that domperidone + amitriptyline risks prolonged QT (a dodgy heart rhythm that can be very bad) so as amitriptyline is very important for my pain management we decided maybe prochlorperazine would be better. The computer told her that prochlorperazine can increase the effects of amitriptyline and tramadol so she warned me it might make me super sleepy. So she double checked in the BNF to see if there was an alternative, which there wasn't.

She gave me with the prescription with instructions to stop the metoclopramide for a few days to let things settle, to give the prochloperazine a go and see how I get on with it and a warning to come back if my twitches don't resolve when I stop the metoclopramide. She also said that she's not ruling domperidone out, but that we would have to figure out how to use it safely if that becomes necessary.

I left promising to tell my body to behave better for next time and she laughed.


Does this all sound normal to you? If you'd told me a year ago I could leave a GP appointment not wanting to cry I wouldn't have believed you. To have a GP who smiles when she sees me, takes me seriously, asks my opinion and listens to it, has a good idea of my knowledge base (so didn't need to explain long QT but did tell me the more common name for prochlorperazine, stemetil) warns me about medication side effects, tells me to come back if I need to and laughs with me is nothing short of incredible. Since I changed GPs I have had 3 consultant referrals, support for DLA, blue badge and DSA applications and have made some actual progress in managing all the bendiness. I feel very, very lucky.

Wednesday 13 June 2012


I am not having a good day. My tummy's been asleep the last couple of days so I've been nauseated, and none of my meds seem to have been absorbing (which won't be helping the stomach either) so I'm in a lot of pain of one kind and another and a bit fed up.

It's verging on that tunnel-vision can't be distracted from, can't do anything else, feels like it will never end kind of pain/nausea. It shakes my confidence in my ability to manage my condition. It makes it hard to remember that life is not always this way and that at some point in a few days or a few weeks it will hopefully get a bit better, as it has done before. It makes me think that there is no way I am ever going to get back to uni, because there is no way I could study / work feeling the way I do today.

I know that this is probably just payback for a couple of weeks of busy days and being a bit lax on my tummy friendly diet plan over the (not)wedding/honeymoon, or to do with the anxiety surfacing around my driving test / everything that needs to get done before I get back to uni, or another infection like the bronchitis I had a few weeks back. I know that one or all of these has triggered this flare and that it will ease, but I'm scared that it won't. I get scared every time that I won't recover. I have found as well that each flare has residue - they all leave things a little or a lot worse than before. So I'm lying here wondering what's going to be different now.

So much so negative. I feel like I should apologise. I know it can be hard to stay positive when you feel like others are dragging you down, so I'm sorry if this is too much negativity. I know that other folk, including other folk who will read this have much more to deal with right now that me.

There's obviously a lot of great stuff going on for me at the moment and I am thankful for all of it. I should say that. The good and the bad are running in parallel like they always do.

This was supposed to be about hope though, so I will get round to that. Chronic illness brings its fair share of bad days. I find that it helps to accept that and be prepared for days when you feel hopeless. I have a stack of books / kindle list of books that make me feel better - either funny things or books about mindfulness (for example How to be Sick which I read on honeymoon and highly recommend). I have several playlists depending on which breed of bad day I'm in - angry music, weepy music, gentlyacousticyhappy music. I have a bad day box full of distractions - games, bubbles, felting and card-making supplies.

Most important to me is a small black notebook which I call my 'bad day book'. I started this book in the middle of a severe depressive episode / fatigue flare and am still adding to it. It is full of quotes - some cheesy'n'inspirational, some from the Bible, some from books I have read on mindfulness or recovery, some silly poems. After I've finished this post I'm going to write the vows we used at our blessing in to it. The aim was to have a book full of gentle, hopeful, positive words that have meant something to me during previous bad times, to keep me going. On bad days I read those words, sometimes I draw pictures to go with them or add new quotes in. It helps a little. Often helps me to identify the particular emotion - fear or grief or anger - that is contributing to a bad mood.

One of the readings we used at the blessing (found here) includes this :
"And in the moments – because they will come –
when...the story of love feels like it has no words left to be told,
may the silence that stretches before us
be filled with the faith
of the echo
of the memory
of the love
spoken into the world
before all time began."

Sometimes that's what bad days feel like 'the faith, of the echo, of the memory, of hope'. A tiny whisper of hope is enough to keep you going.