Sunday 20 September 2009

MORPHINE! A PAINKILLER! THAT'S A JOKE RIGHT?

The pain I am in is bad! It's really bad at the moment and has been for weeks. I can not even describe it to anyone as I just don't have the words. Anyone who knows me will know it is thatif I can't find the words! Then it really is bad!

Over the last week I have been on what they call MSG Morphine 10mg 2 x 12 hourly. It is a slow release form of the drug, in theory should be in my system working constantly but if being in as much pain if not more than I was before, sleeping less than I was before (and what would you know I do still function on less than my usual 3 or 4 hours a night!) is classed as 'working' as suppose it could be hailed a success!
When talking to my GP on the phone on Friday she told me to keep taking it and maybe when I start to take the anti deppressants I am due to start tomorrow the Morphine might start working! Wondering how that will work? Will I still be in pain but just not care that I am?

I am depressed there isn't any doubt about that, I was the one that told them I am depressed! Having only been able to leave this house less than 40 times since September 10th last year and over half of those outings have involved visits to my Dentist or hospital! That and not being able to use my toilet or bathe and wash properly since then how could I not be depressed? When friends or people visit I'm not depressed, I am still in pain but I am cheery!
My shower room and adapted toilet is supposed to start going in tomorrow, though given the visits from the 3 lovely workmen who came out last week all scratching their heads at what they have been told is to get done and how that differs from what I was told and shown years ago and what even they can clearly see needs to be done it really isn't looking good that it is going to happen! Knowing Falkirk council and the bureaucracy that prevails throughout not only theirs but every other local government organization in the UK and perhaps the world? I can even see this stopping the installation of the ramp thats supposed to be going in within the next 3 weeks!

Have I really, really got that cynical? How did that happen?

Hubby yesterday got so fed up with my being in pain that he did what he thought was best and phoned the NHS 24, spoke to a Doctor who agreed that I should not be and shouldn't have to be in pain until I go to the pain clinic in November and gave me a prescription for, wait for it, more bleeding Morphine! Not your slow release stuff just plain old useless Morphine, 10mg tablets 4 x a day! I am to take them on top of the slow release ones (my GP is going to love that) and they will help, the doctor suggested that I could get a higher dose of the MSG until the pain clinic. (I just know what my own GP is going to think of that idea!)
I have only taken the third of the 12 pills that Rab got yesterday about an hour ago and at no time has my pain level reduced and it has taken a lot of coaxing just to get me to take those! Partly because I KNOW they are not going to work but also because (and this is the bit that scares me) I also know this crap is highly addictive! Am I going to end up being an addict to a drug that doesn't even work?
I guarantee you that if you could see me right now at no time would you think I have had 30mg of Morphine today! (remember 10mg of that lasts till 12am tonight!) My pupils are still normal and reactive, I am not sleepy or drowsy (if only! because I am shattered) I don't feel sick and can still go to the loo, you may think my puntuation and grammer is a little shoddy but let me assure you it is always like that, not through reduced mental capacity though! (it's just sheer laziness on my part! lol) It's ok though you wouldn't be alone because a hospital Doctor I saw once went to give me 10mg of IV morphine not realising I'd already had 10mg an hour and a half before he had spent 30 mins talking to me and I had got up and walked to the loo and back to get him his urine sample. I think I taught a Doctor that day! That really reading and not just skimming notes was so the way to go! (see there is good that comes from MS pain!)

I just wish to hell I could get my head around a way to cope with this kind of level of pain, it is nerve pain, muscular pain, spasm pain and even skeletal/joint pain! So there isn't a magic bullet of a drug out there thats going to work. I already knew that, I always have! So now there are some really difficult decisions coming up.
Most of what the pain clinic is going to offer me are going to be long term drug options and a lot of those come at a cost. Gabapentin/Neurontin if your American is a drug that I know will hit the nerve pain on its head like a sledgehammer but for me the price of that will be my eyesight! Two years ago an Ophamologist was willing to register me as practically blind. Suddenly having to stop taking the drug due to an unplanned pregnancy which sadly was not meant to be,
and within weeks it was clear the reason I could not see was nothing to do with my MS!
Then there is the spasms/muscle pain, Diazepam a drug that I do tollerate well is a short term use only drug because it is one that is not only addictive but one that is tolerance building drug which means that there would come a time that the 5mg doses that I have taken on and off over the last 3 months would eventually require increasing doses to still be effective. On the plus side for me is of the 7 day 4 x daily Diazepam courses that I have been prescribed, I have only ever took them as and when required so I don't think there was a week where I'd actually used them all. I do know that as a long term treatment the risk of addiction will automatically rule it out though.
The 'better' muscle relaxant options that are recommended as the standards for in MS treatment like Baclofen did work on my back and my legs. However while it did that quite effectvely it closed my bowel down, I don't mean it constipated me, which is what both I and my doctors thought at the time, I mean closed it down entirely! 38 sachets of Movacol, who knows how many Senna tablets and it took 19 days to go! (Rab gets that a bit muddled up and says it was 19 sachets and a few of weeks) By day 14 though I had to stop eating and almost everytime I drank something I threw most of it back up within 15 mins. The reason it happened is pretty simple really, It is a powerful muscle relaxant! It has its plus points it isn't addictive and it will still work regardless of how long you take it. What some of those who misadvised me first with the dosage and then the advice to 'just stick with it' seemed to forget was the Muscle Relaxant bit! The body has many muscles, the ones in my Arms, Back and Legs that my MS is pretty badly affecting and they are important ones and anyone who has pulled one anyone of them will know how painful they can get! They are powerful muscle groups but in terms of their importance in the funtioning of a human body they are by no means the most useful muscles or important ones your body has, The Heart and your Bowel are ones you really don't want relaxing! Sadly muscle relaxants don't pick and choose which ones they work on! The other one which that was prescribed, I only ever took one of because of the reaction I had to it, perhaps the head spinning, heart racing, out of my face feeling, nausea and the six or eight hours of memory loss it caused is the reason I can't even recall the name of that drug!
So I am thinking that there really won't be any answer to my MS pain. I started writing this last night and still have not slept, I have been posting elsewhere on the net and I got up and put a couple of dvds on. Spent some time talking to my wee man who is back to school today and who we won't see till after school tomorrow as he is off to respite today. I've took my 4th morphine tablet while watching breakfast news and admit to having an unkind thought when the 'Care Not Killing' representative was discussing the Director of Public Prosecutions new cop out guidelines in the aftermath of the Debbie Purdy case! So those assisting a suicide of a relative will be unlikely to be prosecuted unless they benefit finiancially! mmm interesting point, what will be considered as a qualifying financial benefit I wonder? Now I sit and await the council to see if they will prove me wrong and give me a bathroom with a loo I can actually use! Not going to hold my breath though because as bad as the pain is I don't want to die, well not this day anyway! That's the Klingon in me!
Today is not a good day to die!

(and there was me telling someone the other night I couldn't write anymore as I had lost the words and I haven't shut up all weekend since then pmsl!)

Cath x

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