There is such a huge possibility of drugs out there, that it is hard to know if what your doctor has given you is the right drug or not. I have spoken to so many people with not just MS but a huge range of conditions, about what they take and how it works for them, what has surprised me is the two things, the number of people who blindly take their tablets without out question and the number who are too scared to actually even take them, if you fall into either group, well I’m sorry if I upset you with what I am about to write, but these are my views and mine alone and I will explain why I have formed them. I have in the past touched on some of this but my intention it to go that bit further.
I don’t think I have ever not taken a drug that was given to me, the simple reason for that is, I honestly do think that despite my occasional irritation with them, doctors do know best. You only need to put the most simple search into Google to find a million cures for every single chronic illness there is, especially the incurable and deadly ones. You could try every single one, if you can afford to, but to date apart from the odd person here or there, none are cured and eventually return to mainstream medicine. The majority still find the their doctors solutions either actually work, or are the best and most frequently successful in controlling their condition, for many of us that is the best result we can ever expect. I don’t say this from only the side of someone who is a fan of conventional medicine but I also say it from the side of someone who has dabbled in the dark side, in the hope of a cure, for me homoeothermy, diets and “wonder foods”, didn’t work. So I do start from a position of trust in my doctors, even the annoying, rude ones, they might lack as people, but their knowledge of cures, potions and lotions, is greater than mine and I accept that at least. If I am prescribed a drug to take, I at least do them the courtesy of trying it before deciding that it is not for me.
I know that there are some people who take there medications home and then do the worst thing possible, they read the leaflet inside the box. If there was anything that was going to scare the hell out of someone it is those leaflets with all the possible side effects, the word most people seem to miss is “possible”, it isn’t a list of what will happen. Never, never read that piece of paper when you bring your tablets home for the first time if you want to go through the next week with half a brain intact. It is absolutely guaranteed that if you tell a group of people that a spoonful of sugar is going to make them sick, that some will be throwing up before they have even had time for it to hit their stomachs. The leaflet is there so if you suddenly have purple spots on your nose within a day of taking the first one, that you can check and see if it might be the new drug that is causing them, or your 6 year old neighbour sneaking into your house when your asleep. The leaflet is a legal requirement and a nervous persons charter for taking placebo to it’s most deadly effect. I have lost count of the drugs that I have been on through out my life and if there is one thing that I can say without the slightest doubt is, I have never had a side effect from any medication even once. I can say that with total confidences as there isn’t now a leaflet that I haven’t read, simply because I have had new symptoms appear and I have then checked to see what the cause might be & never has it been my meds.
I doubt that just reading those two paragraphs will stop a doubter from not taking their meds, so the last ditch attempt is this. Firstly, doctors train for years, not to make us ill, but to make us better. No doctor, other the tiny amount of lunatics who have been jailed over the years, which is a very tiny number, sets out to make patients more ill than they already are. Your doctor knows your health, what medication you are already on, if you have had any problems with meds before and what is the right drug for your symptoms. With years of training, experience and spending their entire lives steeped in caring for the sick, why would they choose you to suddenly change all of that for and risk throwing away their lively hood. If that doesn’t convince you to at least try it, then please go back, see your doctor again and discuss your worries and concerns, you are never going to feel better by putting your medication in the bin or doing something I saw on TV a while ago and couldn’t believe actually happens, people hoarding years of tablets, to scared to tell their doctor they aren’t actually taking them.
All that said, I don’t actually believe in blind faith in your drugs either, don’t pull a stupid face, it does make sense, read on. I have been questioning my medication for the very start, I even wrote a piece back in May two years ago, in which I explain that I test my meds, well I still do. I started testing due to some meds that didn’t seem to be having the desired effect. I had been taking them for several years and although they did have an effect to begin with, it quickly wore off, but I kept taking it just as I was told to. I guess that I must have taken it for about two years with no result what so ever, but it was on my list of drugs to take, so I did. On my annual visit to my neurologist I discussed the fact they weren’t working and he kept raising the dose, but I might as well have been swallowing Smarties, they did nothing, so I stopped taking them at first for a day just to see how I felt. I have to say I did dread the idea of not putting a tablet that was supposedly keeping me awake, was I just going to sleep all day or what. What happened was nothing, there wasn’t a single change in me in any way, so I went for the next day and the next and eventually through them away and never requested them again in my repeat prescriptions and the doctor never mentioned them again either.
There is a strange double edgeness about doing something like stopping a course of medication without speaking to my doctor about it, I really felt like I was breaking some kind of law, or that my doctor might suddenly say if I didn’t take them he didn’t want to see me again. I am like most people I think, in that I don’t want to be putting unnecessary chemicals into my body, medicine is no different, if it isn’t helping me I don’t want to take it, but only if it isn’t helping me. Right or wrong, I still test all my tablets one type at a time so that I can be sure which medication it is, stopping more than one at a time just makes no sense. Every medication that I take is needed and does exactly what it was prescribed for and nothing else and yes I have even in the last few months checked that my Morphine is working, in the case of those prescribed for pain, I seldom manage more than an hour without searching them out and taking them with relief. Some might say that it is madness to play around with drugs, but none of my drugs are there to keep me alive in the short term, they are there to treat symptoms, all that can be done for PRMS. If you are on a drug that literally keeps you alive, missing out a dose or two, might not be a good idea and personally I can’t think why anyone would take such a chance, but don’t do it.
There is one last thing that I think everyone who has chronic illness have to bare in mind when it comes to drugs, not everyone reacts to them identically. Just because your friend down the road has the identical illness and is on a particular drug that works wonderfully for them, doesn’t mean it will work for you. I guess my illnesses show that one wonderfully as there is a huge range of drugs for people with RRMS, not one of which works for PRMS, both may be Multiple Sclerosis but that doesn’t make them the same. Even those of us who share PRMS will probably be on different drug regimes, as it is so tailored to the person, that we all go through a trials and testing of drugs for the first few years until we narrow it down to what works for us. I have never been happy about the number of drugs I take daily or the fact they are in such a huge selection of different forms, from tablet, capsules and liquids, or that they are all different shapes and sizes, but when you have problems swallowing you always go for the version that works best. At my worst I used to have to crush them all and flush them down my nasal tube, at others I was mixing the crushed mess with maple syrup, now I try to swallow as many at one go as possible, that way my throat opens and the majority pass. What I take and how I take them will go on for ever, just as everyone else’s life with illness does.
Please read my blog from 2 years ago today – 25/11/12 – Belief in Placebo