Safety first or last?

Posted on March 17, 2016 by livinginalimitedword

Someone seems to have stuck a stick of dynamite up my GP’s backside and blasted him into the 21st century. Last month, out of the blue, the receptionist told Adam, that they now have a website through which we can now order my prescriptions and book appointments, without having to phone. I checked it out with total excitement, yes, my world has become that limited, and when I read the leader page, my excitement grew. There was my dream, access to my personal files. It didn’t last long, as it turns out it is up to each GP individually to decide if they want to open our notes this way or not, mine has chosen the not. I had also hoped that I might be able to request a phone call, since clearly I don’t need appointments, but no luck there either. On the good side, we can at least put in the prescription requests.

Then yesterday morning, the phone rang, it was a call from my doctor, well not quite, it was from the surgery number. There was this woman who introduced herself as the practise pharmacist. I wasn’t even sure that the practise employed a cleaner, far less something as posh as a pharmacist, so I was somewhat shocked. No, I’m not implying the building is dirty, it’s just I wouldn’t have been surprised to discover the receptionists were also the cleaners. Anyway, the pharmacist was calling to check that I was taking the correct dose of one of my drugs. There was an error in the dosage on her screen which I had spotted on the pack when it arrived here. Because I knew what I should have been taking, I had ignored it, but she sounded as though she was more than a little concerned and told me that I must only ever take one puff twice a day, not the two on the label. It was clear from the quantities we had been ordering that that was in fact, what I was already doing. It set me thinking about who is supposed to check what, as accidents can undoubtedly happen, we are all human after all. This one, surprised me, though, as I have been on that inhaler now for well over two years, and it has been supplied by at least two different chemists. The original prescription had been requested by my consultant, my doctor then wrote it up, and it has been in the hands of several pharmacists, but suddenly, out of the blue, one stopped and checked it that bit more closely, what happened to all the others?

We automatically assume when a drug arrives in our hands, that we have the right drug, with the right dosage instruction written clearly on it. I have never once, looked further than that. I’ve never checked online to see what the recommended dosage is, or questioned anything about any drug when first prescribed. I suspect, the same can be said for all of us, we assume, we expect and we believe that it is always correct. I know that in the past on two separate occasions a chemist has refused to fill one of my prescriptions, without first talking to my doctor. On both occasions, it has been the same thing, the very high dosage of steroids that I at times need for flares. They both wanted to double check them, as the dosage is off the scale for most people. That, I believed until yesterday, was the safeguard, the pharmacist. This time, I was lucky, when I started taking it, I remembered what my consultant had said about it, and how to take it, so I knew. That was pure luck, as normally, I remember nothing and by now I could have been taking a double daily dose for nearly 2 years. It appears that all our medications safety relies on, is luck. Is that really a good thing to work with, just luck.

Lately, we are being repeatedly told that if you can’t get an appointment with you doctor, and your condition is minor, to consult your local pharmacists. The TV ads portray this well-educated person, just a step below our own GP’s, who’s knowledge is vast and that we can trust, trust to prescribe us the correct treatment for what ails us. Long long before those ads appeared, in fact, for a lot of my adult life, that is exactly what I have done, for anything not serious enough for a doctor’s attention. I’ve watched them filling prescriptions, two of them side by side, apparently checking all is correct. I have even seen some, flicking through drug manuals, I thought to check dosages or any detail, they were uncertain about. For 2 years, my prescription has been in the hands of what must be dozens of these professionals, yet only now, one spots the error? Why?

In this case, there was no danger, but it could have been a very different story. There are a million and one drugs out there that could have killed me long ago, some of which I am actually still on. It has made my realise that maybe, just maybe, that in the future it might just be worth checking ourselves, something that these days, it’s easy to do. At our fingertips, is the exact same information those well paid professional use daily. Putting in one more check as we start yet another new drug, might just save us problems in the future.

Please read my blog from 2 years ago today – 17/03/2014 – Still longing

I used to think that when I grew up I would know the answer to everything and that my life would flow smoothly as I would have nothing left to learn. It’s amazing just how wrong a child can be and how far from even scrapping the surface I am from actually knowing anything. All of us have a million questions daily, some small, some amazingly big, but in our minds at the second they appear they feel just the same. I never got the chance to do so many things in my life that I wanted to do, not because anything really stopped me but more because life just took over, time pasts and somehow those things just became unimportant. The places I wanted to go, the……

The first, or the last?

Posted on January 9, 2016 by livinginalimitedword

My new tablets arrived yesterday evening, so I can tell you their name, at last, Duloxetine. I had done as I always do, read nothing that came with it, other than the starting dose, just to check I had, at least, got that fixed in my head. My first weeks dose is low, as I am taking just a 30 mg tablet, along with 10 ml of my Amitryptiline, a 50/50 dose to help with the expected withdrawal symptoms. I am more than aware of them, as my forgetfulness, that has lead to Adam being in charge of my meds, meant that I have felt them several times in the past. I admit, even though I am still to take a lowered dose, I was still truly concerned, of what might happen, far more than I was about the new tablet. Ask anyone, who has been as ill as I am, for as long as I have, and you will get the same story, life is one long round of trying different drugs. Personally, I can’t think of a single one that I have ever had an issue with, other than the seen as “minor side effect” that came with my Amitryptiline, an incredibly dry mouth. If the new tablet works only as well as the Amitryptiline, but, doesn’t give me a dry mouth, I will be happy. If it works better, I will be delighted.

I have to admit, I was truly hesitant at 8 pm when we headed into the kitchen so I could use my nebulizer, all my inhalers and finally swallow my array of tablets. If there is one thing I need, it’s my sleep, the thought of a disturbed night was filling me with dread, but like a lot of things in life, you just have to get on with it. By the point that they all should have kicked in, I felt nothing different in any way, and I started to relax, maybe, it wasn’t going to be as bad as I thought. Although, to be fair, withdrawal symptoms don’t normally appear for a couple of hours past the medication due time. When I stood up at 9 pm to go to bed, I suddenly realised that there was something wrong, I was totally unsteady on my feet and I felt drugged, spaced out and totally wired. Sitting in my wheelchair has rarely been more welcome, as there wasn’t the slightest doubt in my head, that I wouldn’t have made it to even the living room door, on my feet. I can’t think of anything I could compare it too, as not even the old fashioned premeds, you once got before an operation or the sleeping pills, I had years ago, ever made me feel that way. I was giddy, misty minded and, well, drugged. It was just how I thought, that Morphine would make me feel before I actually took it for the first time, when, I felt nothing. It was more than unpleasant, it was actually totally unsettling and bizarre. I didn’t say anything to Adam, as I knew that he would just worry, all I had to do was act normal, and get to my bed. Why is it when you want to act normal, you feel as though, you are doing anything but?

Once I had said good night to Adam, I tried to put in my ear plugs. I knew without a doubt that I had made a mess of it, but I felt so weird, that I just didn’t care. I got into bed and laid down, hoping that sleep would take over in seconds. It wasn’t until I was lying down that I became aware of feeling as though every sense in my body was heightened and more alive. I almost tingled with electricity, it wasn’t unpleasant, like the tingling caused by my MS, it was more an invigorating sensation, and not what I was looking for at that time of night. I took my mind off it by working my way through my relaxation system, which to my surprise, worked at super fast speed. All my muscles seemed incredibly relaxed before I had even started, which didn’t exactly go with how I was feeling, as I said it was weird. I have to admit that it wasn’t totally unpleasant, it was more unsettling if you know what I mean. Then slowly, everything started to shut down, as though I was diminishing in size, until, I was just my brain and my body didn’t exist, sleep followed. I can’t stress how unusual the whole thing was, I’ve never felt anything quite like it. The closest, well I know my memory isn’t the best these days, and I would need to stretch it back to the 70’s. when I like many teenagers, dabbled with acid. It was along the lines as a refined version of how that felt, except I slept.

I did wake during the night, just once, to go to the bathroom, which should have been easy and would have been, if not for the drug. As I was putting on my dressing gown, I fell over, luckily I landed on the bed, but as it had taken a huge amount of effort to stand in the first place, I wasn’t that amused. It took as much effort to find my feet again and to get into my chair. In my head, there was a thought spinning around, as to whether I should wake Adam to help me, or not. What if I fell in the bathroom? That wouldn’t be funny at all, or in the kitchen, when I eventually got there? Yes, I did still go for a cigarette, something just have to be done, no matter how you feel. Mind you, I didn’t smoke all of it as I couldn’t stop yawning and I was still feeling terrible. The pack had said it was a slow release drug, and it was, all this happened at 4 am. I didn’t wake Adam, I managed perfectly well by myself, but I was truly glad to be back in my bed. I lay there for a while trying to work out, if I was going to try this whole thing again that night, or just write it off as a truly bad idea. I didn’t make a decision then, as once more, I diminished, then vanished.

My head is much clearer this morning, but still not right. How do I feel about this drug, well it was only one night, that isn’t long enough to test anything and as it is night, not morning, does it matter, not really. Yes, I am going to take it again tonight, hopefully, it won’t be so dramatic. I clearly still have quite a bit of it in my system this morning, hopefully, my body will adjust over the hours and be ready for another dose tonight. I have to give it a decent shot, at least, all the way through this weekend, especially, as Adam is here to help me should I need it at any point, which I doubt that I will. No, it hasn’t stopped me feeling pigheaded. If I feel as bad on Monday morning, well I can talk to my Doctor and see what he says. Right now, I don’t have the slightest idea if it is doing what it is meant to or not, I won’t know that until, I have been on the full dose for a few days, so that answer, is at least 10 days away. On the good side, just cutting my Amitryptiline in half, has more than halved the dryness in my mouth. For someone who hasn’t known moister without stimulating it with food or drink, for 14 years, this alone is an amazing event. So much so, that if the two drugs turn out to be exactly the same at pain control, as long as I don’t have to spend my life feeling drugged, I will go with the Duloxetine.

You have to allow every new drug a chance, it’s all too easy to just take something once and dismiss it, Some drugs, especially those that fall into the category of antidepressants, even when not being used for that purpose, take time to get into your system, and time to work. This is just the first tablet, I can’t really judge anything on that basis, time will tell.

Please read my blog from 2 years ago today – 09/01/2014 – A choice over Morphine

The year is only 9 days old and I have already reached the point where I wouldn’t mind sleeping the rest of it through. Until today I have been doing fine and was managing to stay up to 9 pm each evening…..

The Perfect Storm

Posted on January 7, 2016 by livinginalimitedword

I received a tweet the other day from a friend, sending me a link to a piece of research information that I was more than happy to read. They have at last debunked one of the so-called “cures” for MS. For me, it was further proof that research papers really shouldn’t be put in the public domain. The article was published in the Lancet and following research paid for by the MS Society in Canada, on CCSVI. If you haven’t heard of it, it was a theory that blocked or narrowed neck veins to the brain might have been the cause. It has led to many people paying for expensive operations to be done, some claiming really good results, but many didn’t. The new research showed up something that had been totally ignored in the original, it’s not just people with MS, who have narrowed veins, and are totally symptom-free, in fact, 50% of those in the three groups they looked at. I fully understand that the publishing of medical research is really meant of the medical profession, but it is no longer staying there.

To me, false hope is worse than no hope at all, and this, is just one of far too many false hopes, that I have heard of in the time I have been diagnosed, and not just false hope for MS, for many, many conditions. In some ways, they are actually worse than the charlatan cures, as these are backed by well-respected organisations, with impeccable pedigrees, not someone with shiny shoes and slicked back hair and a dollar sign over their head. We all need hope, it’s almost a vital ingredient for a good life. I just wish, they wouldn’t publicise anything, that isn’t available today, tried, tested and rubber stamped, as I have spoken to too many people, distressed because they can’t afford the treatment they believe will save their lives. You just have to take a look at any of the funding circle websites, to see thousands of people, trying to raise the cash need for this or that treatment. Many are for well-recognised procedures, the fact they are there, is a different subject, but many are there on a wing and prayer. They would be better off spending what every money they have, just on living a happy life with those they love, for as long as they can.

I know it is up to us, what treatment we put our faith in. I guess it’s slightly different for me, as I have been told there is nothing, not even any of the disease modifying treatments already used for the treatment of MS, that will work for me, due to the form of MS I have. When you have been told something like that, you initially go through the disbelief. Yes, I searched in the hope of finding something somewhere, but when you come up against enough brick walls, you accept. I used to read every new discovery, but every single one I read always had somewhere in it, that it was only suitable for relapse-remitting MS. The odd one includes one of the main progressive forms, but none PRMS. I used to question my Neuro about them, but his answer was always the same, it’s not suitable for you. Now, well now I don’t read them, unless, someone sends them to me, and some do. When I do read them, though, I don’t look for a cure for me, I look for a cure for those to follow me, those who might at this second, be having their first symptoms. It is a fact, that all new therapies and drugs take testing, long drawn out testing. Nothing, even a new compound of aspirin, finds it way onto the market, without years of testing. Years, I don’t have.

There is one piece of information, that I want to hear far more than they have found a cure. I want to hear, that they have found the cause. I hate unsolved mysteries, the play on my mind, as I can’t believe that there is anything that can’t be solved, eventually. Personally, I have always believed that it will not be one thing, not just a virus, or just the locations it appears in, it will be a complex combination, that when the unfortunate person has collected all the pieces, they become ill. If you read from the start of my blog right through to today’s, you will find my opinion of some of those factors that build up to the perfect storm. There is one thing I am convinced of, though, they won’t find the answer until there is a universal questionnaire, that covers everything and anything, that could even have the slightest possibility of being involved. I have taken part in many online research questionnaires, in which there is always one glaring problem. They give multiple choice answers to check off, but in almost all, the answer I want to give just isn’t there. The second I find that, I know the research is flawed, and what I am actually filling in, is someone’s questions that they only want answers to, that prove their own personal theory is right. Once they do have a true questionnaire, it has to be given to everyone who has MS, regardless, of which form, and that the importance of it is truly stressed, so that those who usually wouldn’t take part in such things, will. Then, and only then, along with all the medical test results from their diagnosis, will they have a true picture, of what we the people living with the condition, really feel, think or believe. With conditions that can’t be diagnosed just by looking at the simple things, like blood and DNA alone, they are never going to find the answer. Running tests on a handful of people, have failed and failed again, so why keep repeating the same flawed process? Although, I am against postmortiums for natural deaths, these too, might be needed. I also believe, that it isn’t just MS, that would benefit from this approach. Yes, it’s time-consuming and, therefore, expensive, but if they want to really find the cause, or fully understand anything, they have to have the full data, to start with. Unfortunatly, until there is a way of doing all this for pennies, I believe, the causes will never be found.

The other day, I wrote about my thoughts on changing my pain control meds. Well, I have just spoken to my GP about the tablets I am on, and what I was hoping he would agree to. It appears, that the pain clinic was talking rubbish, I am already way above the upper levels of Gabapentin, so that can’t be increased. What we have discussed and agreed on, is that I come off the Amitryptiline and change over to a newer tablet that should have a better effect. Because I was reluctant to just do a straight swap, as I am aware of the withdrawal effect, I am going to take a staggered combination for one week then drop the Amitryptiline totally. Of course, in the time, it has taken me to speak to him, and write this, I’ve forgotten the name of the new drug, when I know, I will let you know. If at any time, I feel it’s not working for me, or the change over is too dramatic, well I will just go back to the Amitryptiline. If it fails in any way, well the only other option is for me to take an increase in Morphine. He thinks, from what I have told him, that I need to increase my current 70mg twice daily, to 90mg, but we’re not going down that route yet. I told him how many boosters I have been taking and he isn’t at all concerned about it, as he said, “That’s why I give them to you”. I don’t know what it is, but I doubt that I will ever be happy about spending my life on Morphine. I don’t even have a logical reason, that I am so against taking more. I can only assume that there was something I either read or heard, in the past that’s tucked away in my brain, just saying “No, don’t do it”, but I have no other choice.

Please read my blog from 2 years ago today – 07/01/2014 – Chipping and Changing

We have a large gold fan in our living room, it’s on the wall in the living room just above the sideboard. Back when the room had Christmas decorations filling any space large enough to take them and even the odd one…..

Reaching into the dark

Posted on December 29, 2012 by livinginalimitedword

About midday yesterday I started to cry, I cried at everything and my emotions are still a little raw. I’m not sure where it came from and why it started, but at every slightly touching moment or sad moment on TV tears ran down my face. I guess I just needed to. Sometimes I think that is all it is as there really is nothing behind it, I didn’t feel sad, I didn’t feel happy, I just needed to cry and I did again and again and I think it still needs to come out all over again. I think we all bottle things up and then the trigger happens, usually nothing to do with what we are thinking or feeling at the time and we cry. Adam picked up on the phone at lunchtime that something was wrong, but I didn’t explain or admit anything, as I was hoping it would have gone before he came home, then the damned TV did it again, a touching moment of a fathers acceptance of his sons deafness and I cried. The odd one escaped over the evening and flooded again when I went to bed and I was alone to let them run. I have often wondered if things like this happen because we are still at heart wild creatures who’s lives have been over simplified and made too easy. Is it just those feelings of fighting and surviving left with no where to go, so they explode out of us whether we want them too or not, be it tears or anger, and we are left wondering where that all came from and why now. Think about it, we are one of the first generations, who haven’t had to deal with hunger, war or diseases in the way others have. We have a world that is so simply laid out for us and there is little for us to fight for or die from. We all live lives that we were not created to, so where can all that instinct, that fight and that energy go. Sometimes I think my Mother was right when she used to dismiss me with the words “you think too much”, but how can anyone not think?

I woke this morning little changed from yesterday and I guess that I will head to not only once again sleep this afternoon but also early tonight, 9pm has become normal now as my disappearing time. Adam has learned to read me so well that he is usually on his feet before I am, heading off to the bedroom to collect his dressing gown before I have the words even out. It means I see so little of him, and that I don’t like, but I have no choice, I am not a night creature any longer and that is a fact I have to accept. My temperature control is still off by a mile I am cold then I’m hot and I never seem to be just right, may be Adam is right that this is all my hormones and I am going through the change, who knows. I wish you could just demand a battery of tests and get a complete read out of how your body is and what is happening at that exact moment. I suppose that day will come when some clever clog will develop an app and the last secrets of life will be undone.

Yesterday also brought me an afternoon where the pressure sensation I have been living with under my ribs finally turned in to pain, it wasn’t screamingly bad just pain. So now I have pain from just under my bust line to my waist, like a strange girdle around the from of my body, and when I went to bed last night and laid down, I felt it also in my back, but not until I was lying on it. Day by day it seems to be changing and causing me more and more discomfort as it does. Eat more than a small portion and there is sharp cramping in my stomach, almost as though it can’t empty as something is stopping it move, so it tries harder and harder to get rid. When I showered yesterday I once again stood on the scales and once again despite my over eating that I have lost more weight. It is going down every week and the only thing that I am left concluding is that I am not absorbing what I eat fully. I had that one clue months ago when a tablet passed through me whole and that is about the time my weight noticeable started to change. On the good side thought I don’t feel like a landed Walrus any longer, just a rather large Wale. It’s actually not even that bad, but when you have lived your life as a size 10 everything above just seems wrong. There is nothing about it that I can change for now, I just have to track what is happening and try work out what is behind it, well the medics are taking so long about it that I sort of feel that it is down to me to work it out. Oh how I love our NHS.

Endoscopy appointment

Posted on November 24, 2012 by livinginalimitedword

My appointment for my endoscopy has arrived, it is on Friday are 1pm. When the envelope arrived I knew as I had an endoscopy about 8 years ago that the big packs where the horrid mix that I have to drink the night before and I thought that the booklet that arrived would simply be to tell my what would happen and when to take the gunk, I nearly put it into the kitchen without looking at it, but for some reason I read it, which turns out to be a good idea as things have changed a lot! There is now a diet to be restricted to for the 2days before and on the day of the actual process. For the two days before I can only eat the type of food that I actually hate, almost everything I eat is off the list. I am supposed to eat only white bread, breakfast cereals, fish, meat, peeled potatoes, white pasta and white rice, crisps, rich tea biscuits, cheese, sauces not including Tomato. Basically a totally fiber free diet, 99% of what I eat is fiber, one of the reasons why food not passing through my gut is a rather odd thing to happen, so far today I have had a large bowl of porridge and 4 pieces of fruit, Adam constantly compares me to a rabbit, all not allowed for Wednesday and Thursday. Out of what I am allowed to eat the only things that I have in the house that I would find edible is the pasta and rice, both of which I am happy to eat plain. It does seem a little odd that you aren’t allowed fiber, when they are asking you to drink two liters of liquid that will make you run to the loo constantly for several hours. I will of course comply with this as they want me to.

On top of that they now lay out in detail when you are to drink the gunk, it has now to be in two sessions one in the afternoon the other in the evening, and once you have begun drinking the gunk there is no solid food at all, just sugar free drinks, excluding milk, why sugar free? What concerns me is Thursday evening, I don’t like the gunk but that isn’t the problem, my medication it slow release, the gunk is going to force it through me at speed, so how am I meant to control my pain levels? I think that is something I am going to have to phone my GP about, as that does worry me a bit, it isn’t just the pain though as I know that the withdrawal of my MST and Amitriptyline would not be a nice thing to go through. I have on occasion forgotten to take my Amitriptyline in the past, as it is a liquid and the rest are tablet. With in a hour of missing it, I have been in a sweat and feeling like death, I have no idea what a sudden stop of my MST would be like. I’m not sure other than an injection what they can do to make it easier.

So once again the NHS have booked out my Friday, I have to say that I am impressed at how quickly this appointment has come through, I did expect to be waiting about months, so thumbs up there. All I hope is that they find something useful and stop me feeling like I do and that they can get my gut to do what a gut is meant to do, without pain preferably. I almost bet I am gong to come home with yet another label just as I did after my scan, I never thought that I had gallstones, but I do and I can’t help wondering what else is lurking in there, this could be interesting.