Safety first or last?

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……






Surely doctors should show some humanity

I know that many of you were expecting yesterday that I would give an update as to what happened at the hospital, sorry if I disappointed you. Yesterday’s post sort of took over, even though it was started before I went to the hospital, and completed on my return, the break didn’t interrupt the words. It’s hard to fight against something that is so determined to leave my brain. Anyway, to be honest, there isn’t really anything to report. I was back there basically to report back on the success or failure of the nebulizer and steroid inhaler. I am so bad with names, as I am sure the doctor did introduce himself, but I failed as I so often do, to take it in. I have seen him before, it’s a couple of years ago now, but our paths have crossed. My memory of our first meeting had him fixed in my head as one of those doctors who treats you as an idiot, and gets angry when you fight back. Our second meeting, yesterday, was totally different. He was pleasant, rather smiley and even friendly. We discussed the improvements that I had found and my concerns about my oxygen saturation levels. He was more than happy to go over them all and has put my mind at rest over the dramatic and sudden drops that I had come across. He said it is quite normal for such things to happen. Apparently they aren’t totally sure what causes them, it could be something just as simple as a blockage, which when you cough clears, or as my theory put together, a spasm inside my lung. Basically, as long as they come up again, there is nothing to worry about, but should it stick at a low level, then action should be taken.

When I was last there, I had seen on screen that my oxygen levels were settled at 93%, which had matched with the levels I had found on my monitor at home. I hadn’t realised that throughout the time that I was trying to blow into their machine, failing all the time to give them the consistency required, that that machine was also measuring them. That one had actually read the 91% that I discovered at home last week. So the dip I was seeing wasn’t a dip at all. When he told me that, he started going on about machines I might have seen online that would force oxygen into me when I was asleep. I told him I hadn’t, but I had seen them on TV. It was one of those moments that I love when I don’t give doctors the answer they assumed I would. I got the impression, that he thought that I was pushing to have oxygen at home, I wasn’t. Almost everything that he said from that point on was followed with the words, “but as a smoker, you can’t have oxygen at home.” He was watching me closely for some other response than the one he got. I told him quite blankly, “I know that”. He kept on saying it until I told him “stopping smoking isn’t going to help me, I could give up today and my PRMS could stop me breathing tomorrow.” He had to agree with me, as that is the blank truth, but he did try a couple more times. Considering that Dr. Anderson, my consultant, didn’t mention it even once, his persistence, was rather annoying. I believe that Dr Anderson, along with every other Dr I have seen in the past 10 years, understands my position and respects my views on it, for some reason this guy doesn’t. Just as he did last time, he suggested that I saw my Neuro, so once more I went through the futility of doing so, once more he had to agree, but seemed pleased that even though I wasn’t seeing him, I am seeing the MS nurse.

I hadn’t received the answer to my question about the safe levels of oxygen saturation, but it was Adam who asked it again before I had the chance. Apparently, the level to start being concerned about is 88%, but only if it is consistently at that level. He said that confusion is probably the best measure, if I am totally lost and not making sense, then going to the hospital for a short stay where oxygen can be given, is a good idea. He then, of course, had to add in, that during my stay the would keep me away from the cigs, and that I wouldn’t be able to continue on the oxygen at home if I wasn’t off them. I had to keep my cool at that point, as clearly he had a script he worked off daily, it was just my turn to hear it. The one thing he went on to explain partly for me, but I think more for Adam, was that many people can actually continue to live even when their oxygen levels are as low as 70%-75%. As our bodies weaken, we actually become more efficient at picking up on every scrap of oxygen in the places it is most needed. Healthy people; are actually really bad at it; and in effect, actually waste most of the oxygen their lungs take in, but as our lungs weaken and time passes, we learn to be far more smart about not wasting it. The result is that low levels may distress those around us, but our bodies a perfectly happy.

I don’t know why, but I thought that once they were happy that things had settled a little, that that would be it. I sort of had it in my head, that yesterday would be the last time I saw them until I felt that things were changing again, I was wrong. He actually asked me, how long I was happy going it alone, before returning. I wasn’t sure at all as to what I should say, so I simply said, six months maybe a year. He gave a sort of rye smile and said, “let’s make it four months”. I hate it when doctors do things like that, give you the impression that things are going well, then throw you a curve ball, and shattering it. For him to want me back in four months, sort of says he is expecting things to get worse and for me to need their input that quickly. In some ways, I don’t know if there isn’t much of a point, in returning to see them at all. From what he said, that unless I start having, infection, after infection, when they would start me on a long term antibiotic, there isn’t anything they can do for me. The only medical intervention available is oxygen. Something, that I will never get at home as long as I continue to smoke, and as I have no intention of stopping, I won’t get it. He has also put me off going into the hospital for help, even, if I am having really bad problems. Why would I want to go there and be badgered all the time about my smoking? He even gave me the impression that they would be forceful about stopping me while I was there. All he has done is to make me now feel that I am on my own with this one. Despite the fact that they confirm every time that my lungs aren’t in that bad a condition and that it is my PRMS, that is causing my problems, that they are still going to treat me as though my cigarettes are the biggest issue, when they’re not, my PRMS is.

I understand that cigarettes are bad for me. I am not a total idiot. What I don’t understand is, if it is a clear fact, that the damage they have done to me is limited, and it is more than likely, that my PRMS is going to be what kills me, why should I stop smoking? I understand why a doctor would spend their time trying to convince someone, who has a possibility of a good normal life, to stop, that makes sense. How is it a good use of their time, to try and get someone who is chronically ill, dying in front of their eyes, with a highly limited life expectancy, a life that they will spend in pain, to stop? To me, that is not a good use of resources and probably even cruel. Smoking is one of the small enjoyments, that I have spread throughout my day. There are times when I believe that you have to look at the bigger picture. When someone is housebound, living all the time in pain, has limited contact with normal life, and has no possibility what so ever of recovering, to try and take something that they enjoy and doesn’t have the time left to do any greater damage, just doesn’t make any sense. To me, it is as mad as telling someone who has advanced incurable lung cancer, that they can’t enjoy a single glass of wine each day, as it might damage their liver. Clearly, every doctor has to do their job. Doctors who specialise in the care of lungs know that cigarettes, right now, are the biggest danger that lungs face for most people. Being blinkered and persistent in their goal, might be part of being a good doctor, but it also makes you a poor human. There is a point when you have to put your chosen career to one side and let your humanity in.

Right to the end of our consultation, he was still trying, and even started talking as though for some nutty reason, that I was going to come home and actually try to stop. He actually turned around to Adam and said that every cigarette in the house would have to be removed, that anyone, who might bring me any, should be told, that they weren’t allowed to, under any circumstances. I shut him down by saying, “I would just call a taxi and ask them to bring them to me”. He looked dumbfounded, shook his head and said, “I never thought of that one”, then turned to Adam and said “This one will need watching, she’s a sneaky one”. No, she’s not, she’s just a truthful one, she’s not going to give up smoking, no matter what anyone thinks.

Please read my blog from 2 years ago today – 10/11/2013 – The pain fantasy

It happened again last night, I was sat there enjoying the TV and my nightly gin and tonic, then suddenly the pain grabbed my side just as it did the night before and just like then it lasted only a few minutes….

Hospital recall

I forgot to say yesterday that I was at the hospital this morning, so everything is out of sink with my normal routine. I had to go back and see the Gastro brigade, as I already knew they are saying it is all down to my MS, but they now want to do further tests. I have to have another endoscope this time from my mouth down, when I had the last one I said to Adam that it seemed strange that it was a colon only as the worst of the discomfort was at the top end of my abdomen rather than lower down. They also are insisting that I have to see a physio therapist so at least 3 more hospital visits as they also want to see me in 6 months. I got up this morning telling myself that this would be my last trip out and that I would get the hospital out of my life again as it has been for years, once again I was wrong and my life is still in their hands and at their call. Yes I am a little pissed off by it, as they have said clearly to both me and Adam that there really isn’t anything they can do, but they have a need to tinker around, expecting to find nothing and to be able to do nothing, but they have me in their system so they do it.

Once again they weighed me and although I knew my weight had gone down, I was surprised to see that I have lost another 6 kilos, although the doctor didn’t mention it, but I can only see this as further evidence that I am not absorbing all I eat, I did mention in passing that things have passed through me as they entered and occasionally bring back undigested food, but he went past that as fast as I did. Adam again asked about my gallstones and again we were told that they don’t think there is anything to be achieved by removing them.

I am again wiped out by my morning trip and angry as I am so far our of line with my normal day and for what? No matter how often they take me out and bring me back on the horrid stair walker thing makes me feel sick for hours. I tried this morning not having breakfast as I though that might help. I don’t think it made any difference at all but it was worth a shot. It was actually a good thing I didn’t as although yet again I had been told they wouldn’t be here before 10am, they were here just before 9, so it I had made my breakfast, I would have been eating my porridge and wouldn’t have had time to finish it. We were once again left sitting for ages waiting for the ambulance to bring me home, making it back here for just after 12. The getting back and forward to the hospital really is an ordeal that when you simply talk to the doctor, with no examination, as I said a few days ago this could have all been done on the phone, one day maybe, but I doubt their systems will ever advance in time to be of use to me. Hospitals seem to take for ever to adapt to new thinking and for now, it is a step too far for them to realise everyone has a phone these days. My energy is now close to zero so I guess I have to head to bed and get the sleep I need.

A plan from the day after

I suppose we all do it, go to the Doctor and hear what ever it is they want to tell us, then go home saying well that’s OK. We then proceed to build up a ring of OK around ourselves, luckily I spotted it yesterday afternoon while I was trying to sleep. That in itself told me it wasn’t OK, I COULDN’T SLEEP. I lay there and thought though everything that the Doctor said and what it implied, that was the bit I had missed, what it implied. I am going to spend the rest of my life with at the very least this level of pain, if not more. The drug that is holding the pain where it is, is my MST, for those that don’t know it is an opiate and like all opiates your body builds up a resistance to it over time and all they can do is lift the levels you take daily, but there is a limit to what they can give you without killing you. In other words they will only be able to control the pain as long as my body doesn’t build up a resistance to quickly. The very reason why when my medication was changed from oxycontin to MST I didn’t settle for the direct replacement levels. The matching dose was 70mg, but being a different compound it lifted the actual quantity of the opiate, so I worked and brought it down to just 60mg. It meant I had to put up with a bit more pain but my mind was clearer and I was also lengthening the time that I have with reasonable control.

Everything with MS seems to be a balancing act, trying to walk along that tight rope without falling off and accepting there are payoffs all the way. There are no cures, no magical drugs that will take away the pain totally and the best that a doctor can offer are options, you have to make that final decision yourself as to what you can live with. Just as yesterday yes I was offered other drugs but even the Dr himself said if he was me he wouldn’t change them, the fact my body reacts only positively to what I take and I know they are helping means they are probably the best option. I have to agree, if the other drugs had a guarantee with them that they would work better then I of course would take that few tough weeks while the change over took place.

So I know have it spelled out again and confirmed again, that the NHS can really do no more for me. I have heard that now for the last seven or eight years, there is nothing more we can do sorry. I have thought through the possibility of going to see my Nuro again, but I can really see no point, it will just be another day that screws me up for days after. Another horrid day of stair climbers and being trapped in a place I don’t want to be. Another day of going over word for word, what I have said to so many other Doctors. Another day of watching them nod their heads, make understanding sounds and then at the best have them try to palm me off on someone else, just as yesterday was. That was what happened on my last trip to see him, he sent me to two other department who dragged me through repeats of every other visit and at the end said, “I’m sorry we can do nothing to help you”.

So what am I going to do. I don’t have a plan if you like, it’s not clear in my head step by step, but what am thinking of is to step up my reading and my research. When or if I find something that I think may help, I will then talk to my GP first to get his input, hopefully he will be happy to go along with it, without a trip to the Nuro. I have read a lot clearly over the years and have tried several times to do that with my Nuro and on each occasion he just smirked said no and gave his reason. I think I might have more chance with my GP, but it is 100% clear to me now that the NHS won’t volunteer any help or hope so I have to.

I spent 20yrs fighting with them to get my diagnosis, just to land up fighting with them to have a better quality of life. It doesn’t sound much to want to live with less pain but still able to live a life, but it seems that is a future I am not being permitted to have, not by them being cruel, but because they have nothing more to offer me. I used to believe that all you had to do when you were ill was to go to the doctor and collect a prescription, oh how wrong I was.

Crossing a milestone

After yesterdays conversation with the bank I had to make another call and that was to the Doctors about the pain control issue that might occur on Thursday. My own doctor is on holiday so I had to talk to the other partner, I was ready for a struggle but to my total surprise I had no problems at all, there is a prescription on it’s way to me right now for liquid morphine. I am to take my meds as normal but she agreed that there was a real possibility that I would need more pain control as my normal meds might well be flushed out of my body. It was when I came off the phone I found myself feeling really strange about what had just happened. I had gone into the call ready for a fight to get anything, but there wasn’t a second of argument in the whole call, she said yes straight away and was totally helpful. I found it rather upsetting. I wasn’t looking for a fight but it was the fact that she didn’t hesitate and offered a fast action morphine without any thought about it, it was conformation that I didn’t need, I am really ill.

I know that sounds silly but we all kid ourselves when it comes to our own health and someone jumping in and offering me a high level painkilling drug in a form not normally handed out with ease, was like saying your are incredibly ill and you need this now! I like everyone, ill or healthy, live in our own little bubble that is our normality, if my bubble had a label on it saying incredibly ill, I would be acting that way and as you know I don’t. My bubble says, your fine get on with as much life as you can, my bubble was popped, by kindness and honesty! It is not the first time the medics have taken a sharp needle to my health bubble but just as in the past it is difficult to handle because of the past. I spent so many years trying to get a doctor, any doctor, to listen and to understand that I was ill and all dismissed me as a hypochondriac. To find myself being handed without even a seconds hesitation what I need, is still hard to accept and strange to find that doctors don’t only believe me, but are now quick to help me.

If you are an able bodied healthy person you might find my reaction a little odd but it is yet another point in my learning to live this way. I have just had someone confirm I am really ill, when I feel no worse at this second than I did when they said it, and I am fine. It is another milestone, like the day I was told I had to have a wheelchair, a milestone saying you are more ill, than you want to admit. I always thought that people who would be given morphine were near deaths door, then I was given it, but in very controlled measures, now I have been given it with a take as much as you need to get through. When I spoke to Adam about it last night he said the obvious, I am not the patient who calls them every few days demanding things I don’t need. He is right, but I never have been that patient and I have had that treatment. I feel right at this second that some how the NHS are turning my life upside down, all the doctors are listening and they are all trying to help, it all rather odd and difficult to get my head round. What next?