Running the Pain Gauntlet

The last twelve hours just reminded me how very hard it can be to live with a chronic - and complicated - illness.

I'm allergic to morphine. Lethally so. It lowers my blood pressure to crash-trolley levels and has somehow crept onto my various drug charts with enough regularity to confirm the fact.

My only option for pain relief is pethidine, and when I'm stuck on "Groundhog-Day-Vomit-Marathons" it provides the only comfort I've ever known.

The problem is, pethidine is a "dirty" drug. Effectively, a man made form of heroin, it is said to be much more addictive. It is neurotoxic, only works for a short time (4 hours) and can only be given in tablet or injection form .
Scientists have invented many more innovative delivery methods for morphine - Oramorph lollies, oral syringes, patches and even small tablets that can be tucked into your gums to be absorbed more effectively.

Pethidine in 2012 is considered outdated and unpleasant. Few pharmacies hold it in stock and even some hospitals no longer use it on their wards. However, if you're allergic to morphine and can't take things like NSAIDS, ( None Steroidal Ant-Inflammatories) that leaves just two options : paracetamol and pethidine.

Well, paracetamol, whilst a super-drug,  doesn't help my bowel pain at all.

So that just leaves pethidine.

Regular readers will know that this is the bane of my life. It has put me through more trauma than any illness or complication.

- I'm routinely dismissed as a junkie or a hypochondriac - even clutching my various letters from pain specialists, GPs and a repeat prescripton as "proof"
- Some doctors simply won't prescribe it any more
- Scripts are nearly always written incorrectly and because pethidine is a controlled drug, pharmacies will not fill the order until the script is 100% correct. Hence a new round of pethidine ping-pong with Suey limping backwards and forwards between the doctor's surgery and pharmacies
- It often takes hours for me to get a dose as an in-patient, leaving me in horrible pain outranked only by the emotional pain of being abandoned, let down.

It would be sensible for me to build up a little stash for emergencies, but it never works. I only like to use pethidine when I'd score my pain levels at 8 or higher. Just imagine the will power required if you have something in the house that can ease, say. a 5 or 6? I've tried asking my Mum or Hubby to keep a secret lot for emergencies, but I always end up using them instead - unable to "grin and bear it" when I know something is within my reach that will make the pain stop

 You'd have to be Wonder Woman to resist. I am not Wonder Woman.

When it comes to this level of pain - tears springing to my eyes with no warning, panic setting in, writhing, vomiting - I'm completely helpless and hopeless. Too many long nights waiting for help that never came have given me Post Traumatic Stress Disorder (PTSD) triggered by even the mention of the word "pethidine"

I don't like keeping a heroin-copycat in the house. I live in fear that my amazing children will somehow find a  syringe lying about or a broken glass ampoule top. My GP and I have an understanding. I only ask for a script when things are desperate and she prescribes it for me within hours, freeing me from the 2 day repeat prescription rule.

Yesterday was a bad day. On Thursday I'd eaten cauliflower cheese for supper and immediately knew something had gone wrong. All night and all day yesterday I hoped it would ease off, but it just got worse.

By about 8 O'Clock last night, I knew I would have to run the terrifying gauntlet of trying to get a prescription. For pethidine. Which everyone hates. From a random out of hours Dr who has none of my notes.

Miraculously, a Dr phoned within minutes and couldn't have been nicer. She wrote the script out there and then and tried to fax it to a Tesco's pharmacy nearby. It wasn't in stock.

Poor Dave rushed all the way to Horsham (about 20 miles from our home), picked up the script, and raced as fast as he could, back down to Brighton.

I'd found a pharmacy that was open (Weston's on the Lewes Road) but despite begging the pharmacist to wait just a few minutes, she refused, and when Dave got there at just 3 minutes past ten, they had locked up and gone home.

While several of us phoned every pharmacy within a 50 mile radius, Dave went on to the Boots in North Street, but despite claiming to be open until midnight, that was all shuttered up too. We phoned all 3 hospitals in the area, to see if they could suggest anything, but none could. (or would?)

By about 10.30, I told Dave to give it up. I would limp through last night and we could get the meds first thing in the morning. At 8.30am, Dave was literally waiting at the door of Boots. But the farce goes on!

No-one in Worthing stocks the meds I need! We spent all morning, phoning every pharmacy for miles, but no joy.

In the end, one pharmacy found 5 injections to keep me going, and now I need to go through the whole process again to get a different script written up with the right dosage people DO tend to keep in stock.

Anyway, the whole point of this rather rambly post is to show how exhausting it can be, just to manage your own condition! Navigating the behemoths of the NHS and the DWP saps so much strength, you could almost say it was a full time job........

********

I wrote this poem when I was a mere 21 years old. Still as apt for me today as it was 17 years ago

Doctors


He won’t believe me I know he won’t,
In his 4 x 4 and laboratory coat.


He’ll call straight back, she said he will.
I’m to tell him it hurts and explain that I’m ill.


He won’t be listening, anyway.
With his dinner waiting and golf to play.


He won’t sit down or examine me,
He’ll wait at the door, impatiently.


He won’t stay long, I’ve seen it before.
He’ll shove in the needle then run for the door,


But on the way out, he’ll find the time
To lecture me sternly for all my crimes.


He’ll scold my weakness in calling him out,
For eating or breathing or lazing about,


And all he’ll see is my skeleton frame.
He won’t check my notes or remember my name.


He won’t believe me, I know he won’t
In his 4x4 and laboratory coat.


*****


He hasn’t called back, they never do.
We’ve called again, but I’m 4th in the queue.


He’s probably still at the golf club bar,
Or had one too many to drive his car.


But really, don’t worry, I’m used to it all.
I learnt not to scream, there’s no point at all.


It only confirms what they know to be "Fact",
My selfish psychosis all part of the act.


He won’t believe me, I know he won’t
In his 4x4 and laboratory coat.