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……

Racing time

Posted on December 16, 2012 by livinginalimitedword

Good morning world! It’s Sunday again and for once I am listening to the TV not snoring as Adam is actually asleep in bed not on the settee. There has been no change in my chest, just as clogged up as it has been for the past few days, I have to say that my suspicions about my meds seems to be accurate, I have no chest pain or sore throat as I always remember having in the past so I am at least grateful for that if nothing else, plus I have in the past few days gently moved the time I take my meds in the evening back bit by bit and I do feel better in the mornings. I guess I was right that they are waring off faster than they used too. I remember clearly being able to go 14hrs from one dose to the next but that isn’t happening any longer it is a much tighter window. I will have to phone the ambulance service again on Monday, I hadn’t realised until last night how fast this month was passing me by, I have an appointment at the pain clinic on 20th which I thought was still weeks away then I realised last night that Christmas was days away not weeks. I have a pile of forms to fill in for them as well, so I will have to get on with that rather than just leaving them sitting on my desk with things on top of them. A year ago I would have gone mad at the mess I now put up with on top of my desk, I’m not sure what I thought might happen by ignoring it, but it didn’t go away that is for sure.

I am still in two minds about this pain clinic thing, I have heard so many negative reports as to what they can do to help and I have no idea short of more meds how they think they are going to change things for me. I have no faith in any therapy or relaxation systems, over the years when I had no diagnosis, I tried a lot of things and not one of them helped in the slightest. I am only going because the nurse said one thing that clicked and made me think it was a good idea and that is that most GP’s are reluctant to prescribe strong meds, but if a consultant prescribes they will go ahead with it. I am hoping as well that they may actually know of other meds that may be my GP isn’t so aware of as he doesn’t really deal with MS, fibro and so on that often. I don’t want to be drugged up with meds that make me fuzzy or make me sleep all the time but I do want to be able to live without pain beyond reasonable. It’s a little odd to measure that for someone who doesn’t live with constant pain, but there are levels that are livable, as I am under no illusion that I will ever be totally free of it, the damage done is too vast for that, just better relief is what am really looking for.

Teressa has now changed here wedding date from January to March, I wasn’t that surprised that they had to move it as no Government department moves that fast. Jon is still waiting for the immigration dep to OK his fiance visa, although both of them are still hoping that he will be here for January, it was more that they realised that with people coming here from all round the world, who have to arrange travel and accommodation that it was all getting too close with no guarantees. I already have 2 wedding invitations from them so I expect this will mean a third to follow soon. Luckily when Teressa booked everything she was very upfront about that the date may need to be flexible so none are charging her any more than she has already paid. It may not all be going to the plan that they dreamed would just open out perfectly but it proves I would think to the departments concerned that they are seriously in love and not just trying to get him into the country. From what Teressa has said to me there is even a chance now that he could have a job at Sega UK, completing the circle as it was at Sega US that they met originally. I still haven’t really settled in my mind that she is now living here in the UK again as she has lived abroad for so long it just seemed the natural place for her to be. When ever she phones I have that flash of what on earth is this costing, as she calls on her mobile and then I remember again that she is in London, just a few miles away compared from the thousands that used to be between us. She is hoping to come to Glasgow in January this time with Jon, so that she can introduce him to everyone, it will be a really strange thing for me as I have never in her entire life met any of her boyfriends, nor did I ever meet her first husband. I hope this visit happens when she has it in her mind to be but we will see, I have though totally come to terms with not being at her wedding, as much as I would like to, it is just all too much.

Control

Posted on December 11, 2012 by livinginalimitedword

We seem to have plunged into the middle of winter, it was minus seven last night and I have no problem believing that is the house is freezing. Again this morning I was feeling terrible when I woke up, but I think I have the reason why every morning lately had been a bad start, I think it has to do with my meds. I guess that they are not holding over the 12 hours any longer, but almost exactly the expected 12. Tonight I am gong to try take them a little later and see if it helps as I have been taking them at around 7pm, getting up a 7:30am has been OK in the past, but that half hour seems to send me into withdrawal symptoms as yesterday and this morning I felt a good deal better within 20 mins of taking them. When I feel that bad that I am in a cold sweat, the agitation levels are heading upwards by the second, pain only comes into it when it crashes in after about another half hour, almost as though the tablets are giving me warning, take them now or you will really know about it, I wish it would just find a nicer way of reminding me.

When you have a condition that destroys your memory, getting things are the right time and in the right order isn’t always that easy. I wish that I had a medicine box that played a small alarm when each dose it supposed to be taken. At the minute I do bundle things together, some meds are supposed to be three times a day, others once a day, and others still twice a day. Getting that lot right and not missing the odd one here or there is harder than you might think. My concentration can mean that time passes me by with the sudden realization that the twenty minutes I was waiting to pass actually ended an hour ago. Life isn’t easy for anyone but if you actually can’t hold on to what time of day it is, believe me it gets even more confusing. All the medication boxes I have seen allow for those errors to still happen and don’t have enough sections and big enough to hold all the strange range and sizes of different drugs, then there are the ones that are liquids, none allow for those at all. Confused, believe me, you would be.

Managing time is probably the one thing that I do have under control and that is thanks to my blogging and twitter activity, I would recommend it to anyone. My daily life is run from a spreadsheet that lays out what I have to write, when and post. It gives me a daily structure that without I think life would be really hard to cope with. I know that when I am finished writing this that I have to post it scheduled it on Twitter and them on to the next job. I can’t imagine letting that go even for a day, my mind demands structure more and more as I loose the ability to work it out as I go along. Lose of concentration allows all kind of madness to take over, but with my spreadsheet always in view it normally pulls me back in line quite quickly. I expect we all find ways of trying to over come the problems that our health causes for us, but I totally believe in routine and achievements, even if that is simply a case of ticking off another job done. It is also the one area that I have a tiny amount of control, I can’t control the pain, the fatigue, the spasms and twitches or even the amount I need to sleep, but I can control the thing I still refer to as a brain, well in some aspects at least.

Dreaming of Cleaning

Posted on December 5, 2012 by livinginalimitedword

I was talking to Adam a few days ago when it came to mind that when I had all my pain problems and fatigue that the doctors either ignored or put down to depression, the one thing they all did was to put me on to Amitriptyline, in the 80’s that was the favored drug for depression, these days it is used as part of the pain control system and that is why I am on it now. I can see now why they kept telling me I was depressed as once on the drugs I felt better, I felt better because the pain was under some control, not because they had cured my non existent depression. It was one of those light bulb moments, two thing clicked together in my mind and suddenly made sense. Things like that happen from time to time, look back isn’t something I do a lot, when I am on my own it is more frequent that the past appears through conversation, or due to a TV program, but it is always relief to find an answer even 20 or 30 years later.

Time and time again people talk to me about living with pain and how I manage it, and how I feel having to live with it. Strangely in my quite moments it isn’t the pain that I focus on, it is my inability to do what I want, when I want. All the drugs I take do help a lot with controlling the pain and it really is a fact that most of the time it is a dull ache, unless the spasms start and them I know all about it, just as it was years ago before they gave me my first cocktail. Drugs help with the background or constant pain if you like, those sudden attacks, and I use that word to it’s fullest, there is nothing that helps, or at least not that they have given me. The majority of the time I live with pain that I can’t get rid of, but I will say with total confidence that without the drugs, I doubt I would be writing, as I doubt I would be able to do anything. As it is now, well I can live with it, I just wish I didn’t have to.

Pain is only part of my life as I said to be honest if I could bring back something I have lost it would be my mobility and fatigue that I would fix first. To have enough energy and ability to just clean the house, even slowly would mean the world to me. If I could turn the clock back even 5yrs, when I was already housebound, but I could do all the daily things I needed and wanted to do, that would be my greatest wish! I know most people dream of getting rid of the housework but we are all different and that really is my wish if I found a Gennie. The less you can do the more the small things become important, I know some will think I would be more likely to have said that I would want to be able to get out of my house, but that involves so many small wishes, to get to the final big one, it is a huge wish, so huge that I would in fact be wishing to be totally well again. A nice thought but not one that will ever happen, small steps are more realistic. I am not sure what the pain clinic will be able to do for me, but pain or not, it won’t be enough to give me back my freedom, as pain is not the only problem, it is just one of many.

36 hours

Posted on December 1, 2012 by livinginalimitedword

What I am wanting to write today started just and hour after I wrote my last post, as you know I was prepping for my endoscopy, what neither your nor I could have know was all that followed, or that by the end of the day we were ready to send in a complaint.

At 2pm on Thursday I had had nothing to eat as I was instructed and very little the day before, I mixed up the first of 4 liters of the gunk they had sent me, the first sip brought a clear memory of 8 years ago when I was drinking the same stuff, I knew the flavour as well as if I had just been drinking it the day before. I can’t compare it to anything as I have never tasted anything like it, I tried to mask the flavour a little by mixing it with tonic water instead of plain water and loads of lemon juice, a system I had used successfully in the past, it helped a little but it wasn’t great. I just two hours I have to drink 2 liters of this stuff. I don’t know if you have tried to drink 2 liters of anything in that short space of time but it is really hard, by the end of the final glass I was nauseous and blotted to the point of feeling I would burst, but nothing at all had happened. I felt so bad with it that I went and laid myself on my bed, sitting was to uncomfortable and I was also exhausted, I had missed my afternoon sleep. I managed to stay there for just over an hour when I at last needed to head for the bathroom, to my disappointment I did pass some stoles but they were normal to me, just as though I hadn’t drunk any of the horrid stuff, worst still I was still bloated and I had 2 more liters to drink.

Although like the first 2 I was supposed to drink them both within 2 hours, it took me that long to manage one of them, even though half way through it there first signs of success appeared, as did the first signs of my meds not holding off the pain or the even having taken a double dose of anti-nausea med I still wanted to throw up. I did take some of the liquid morphine I had been given as it wasn’t just pain break through I was also breaking into sweats and feeling like hell. I never drank the last one, it was impossible, I had to go to bed again. It wasn’t quite 9pm but I had no energy left, I had to get up again and move as fast as I could four times but after that I slept. At 4ish I woke again, sweating and feeling like hell, I had no doubt this was a side effect or withdrawal if you like, I was in pain and I had no choice to take some more morphine. With it being liquid it went into my system quickly and sleep took over again.

7:30am and it was the alarm clock that woke me this time, I still felt like hell and I knew I needed my meds, with in 20 mins of taking the right doses of all my cocktail I felt human for the first time in 12 hours. All of that sounds bad enough but expected really, it was the rest of the day that has left us ready to send in a complaint to the NHS.

Adam went to work and I knew that I had 3 hours to get ready so plenty of time for me even in my slowed down bitty way to manage it. Wash, dressed, hair and makeup done I was sat ready to go at 11am, the ambulances don’t give an exact time but they ask you to be ready 2 hours before your appointment time, which is fare enough. I then sat here just tinkering on line not wanting to start anything as there was the chance I wouldn’t get it finished. I had all the curtains shut as firstly it was freezing out there and second I knew it would be dark before I was home again. So I waited and waited, at twenty to one I phoned as there was no sign of them, the operator who I spoke to was nice but said something I didn’t believe she thought she had the authority to say. She said that I wasn’t to worry as the it was on the way and although I would be late that I would be seen when I got there. I questioned that but she was totally positive about it. I hadn’t been off the phone for more than 5 minutes when I heard what I though had to be it, so I switched everything off and put my coat on. It always takes a few minutes for them to get the climber and to put out the ramps and so on, but they didn’t ring the doorbell, it was then I opened a curtain to look out and found it wasn’t the ambulance but a delivery van for the corner shop just a couple of doors down from us.

1pm came and went and I phoned Adam as I knew he would be on his lunch break. He was on his way to the ward to seen me and couldn’t believe that I was still at home. He went and spoke to the nurses and they said that as long as I was there in the next hour or two it would be alright. Reassured a little I took my coat off and waited a bit more. At exactly 2pm they arrived. As always they were really nice and told me the ambulance I was supposed to be in had refused to come as they were so behind and had others to drop at the hospital. They had been given the job at 1:30 and they didn’t have a stair climber so they had to carry me down in a slope chair. When we got to the hospital there was a conversation between myself, the receptionist and two nurses, I would be ready to go home at 4pm and the driver said he would book that when he got back to the ambulance so that nothing would go wrong getting me home.

The booking system and discussion went OK and they were happy to go ahead even though I hadn’t managed the final liter, apparently it is common for patient with a combination of my problems and the meds that I take. It would have been nice to know as I wouldn’t have been worrying since the night before. The final thing was for a line to be put in and we were off. She prodded around several times on a vein that I have had loads of lines with no problems in the past, but at last she was happy even though I told her it was hurting, but we went of to theater. The doctor now warned me that with the high level of medication that I am on, meant that what they were going to give me might have little to no effect. He took a syringe of the painkiller they give and put it into my arm and then stopped. There was a lump under my skin, the line wasn’t in my nerve, and the drug was just under my skin. New line into the other arm and they gave me the sedative, they could do nothing about the pain meds as where they were could mean they would take hours or minute, they didn’t know. I don’t think either had any effect at all on me, but the endoscopy was fine, just one area where they had a problem getting round but that was all.

The good news was they saw nothing to worry about and they took three biopsies to be on the safe side, so it looks as though it is as first thought just my MS. Back to the ward and 10 mins to rest then a rush to get my clothes on to be ready to go home. 4 o’clock came and went, at 4:15 the nurse phoned, there was no ambulance booked according to the operator but she would send one. Adam arrived on ward at just after 5, he took me out for a cigarette as I was a screaming point with all of it. Back on the ward again we waited, the ward should have been shut at 5 but they were all still there because of me, arrangement had been made for my to go to another ward to wait there but as we were about to move, an ambulance arrived, but one that didn’t have a climber. Although it is all clear on their system that I am disabled and need a climber they had been sent to assess the situation. All of us Nurses included exploded at them, all followed by apologizes as it wasn’t their fault. The discussion went back and forward and we were taken to ward one, by now the clock was ticking toward my needing my next round of meds, they aren’t the kind of drugs they would hand out either as they would all have needed a doctor approval, that would take hours.

Another half an hour of waiting, the same crew reappeared, they had been told to go right across Glasgow, at peek time, to pick up another ambulance which had a climber and come back for me. It would have taken them more than 2 hours to do so. They had taken the decision to just fetch me and take me home, carrying me up the stairs between them, something that shouldn’t have been done in case they injured themselves. They clearly had seen the state I was in and what ever the nurses said to them about how I was, had made them realize it wasn’t right to keep me there any longer. As we were leaving one of the Nurses was still there and she was about to put a complaint in herself, as the whole thing was just one big mess that should never of happened.

If I had been a fit person who isn’t adversely effected by stress and who hadn’t found the past 3 days without food and horrid stuff to drink and didn’t have enough to put up with without treatment like this, well maybe that wouldn’t have mattered, but if I was, I wouldn’t have needed their help at all. I almost didn’t get the endoscopy at all if the ambulance had been another half hour, it just wouldn’t have happened and I would have had to start all over, getting an appointment starving and everything else. We all know there has to be cutbacks, but if cutting means that patients don’t get treatments done when needed, and ill people are stressed into being worse, the cuts they have made are back firing, as it would have cost far more to rearrange not to mention increasing the waiting list.

Today, I am tired and I am feeling at the worst I have in the last few months, and all because of an ineffective ambulance service, who ever is in charge clearly isn’t getting it right!