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……






There is always a price to pay

I’m not promising, but I have started on sorting out my posts from 2012, with the possibility, that they might be, the start of that book I have thought about, so many times. I am finding it really hard because I am continually want to rewrite every single one. Yes, staying to the heart of each post, but correcting my extremely bad grammar and adding in details, that back then, I didn’t consider important. My style of writing has changed so much, that I keep finding myself both embarrassed and disappointed, at exactly what each days scrawl held. It is quite an eye opener. One thing is for sure, if it ever gets completed, I will have no problem saying that they are not an exact copy of what is already available online. That alone, for the start of 2012, will without a doubt, be for me, a total blessing.

I am still finding myself both tired, and drained, after Mondays hospital visit. What exactly did the damage, as always, I don’t have the slightest idea, all I know, is that bed seems to have been a constant thought, stuck right in the front of my mind. I hate when this happens, as I know without a doubt that that means, this is going to be a long week. When you find yourself aware of every single minute that ticks past on the clock, what other outcome could there be. Almost ironically, I found myself yesterday morning coughing up phlegm. Despite my years of smoking, I have never had what is commonly known as a “smokers cough”. I don’t have the slightest idea how my lungs have cleared themselves of all the gunk, they are supposed to produce if you smoke. Either mine never produced it, or they somehow learned to absorb it. Mind you, I can’t say that it is something that I have worried about, who, after all, actually want’s to hack their lungs up daily. I’m not actually coughing repeatedly, as I said, it’s not something I do, it just seems to be one single cough, then my mouth is filled with crud, that I don’t want anywhere near me. What is unusual about today and yesterday is that those coughs are appearing several times an hour, with always the same result. On Monday, I was at the hospital, where if my lungs were going to fill with a lumpy mouse, would have been the day to do so. Tuesday morning, I wake with that unmistakable congestions, that just kept growing. Sods law, I guess.

Between my tiredness and my submerged lungs, you would think that I had more than an unfair kickback, from daring to leave the house for a handful of hours. My PRMS doesn’t agree with that conclusion, it has been throwing different symptoms, and issues at me, almost hourly. Both large and small spasms; in any place that it fancied at the time; sensations; from mild to body stopping, on into both the imaginative and basically mundane. When my PRMS decides that I have been pushing it, it always makes me pay for it. A perfect example actually appeared just as I was ready to go to bed last night. I had, like every evening, been sitting on the settee watching TV. Adam had, as he usually does on a Tuesday evening, spent most of it in the kitchen weightlifting. It has been a hobby of his since his teenage years. Despite his desire to be a muscle-bound monstrosity, like most people, he doesn’t have the time or the money to put in the dedication required. He has settled to just staying reasonably toned and with stronger biceps than most men. He had joined me for the final half hour before I went to bed and to be honest, life seemed perfectly normal, then I tried to stand up.

The initial push upwards and away from the soft cushions appeared fine, then I got to the point where momentum ends, and balance along with muscle memory takes over. Everything felt totally wrong. Yes, I was almost upright, but not properly. My feet were telling me that I was standing on a sponge, not the floor it expected at all. My ankles, that my weight was centered and that they were being pushed over, into directions that weren’t correct. My lower legs had fire spreading over my shins and my calf muscles, had knives being sunk, deeply into them. The back of my knees felt as though someone had managed to reach inside them and were twisting and pulling all the tendons and mashing all of the muscle structure. Yet, the three inches both above and below my knees were totally numb. All of that appeared in less than a second and there was nothing I could do but launch myself forwards towards my wheelchair. I had reached out to grab the arms, but as my left hand touched the rest, I knocked my thumb joint, once about out of its socket. None of this, was possible in silence, especially not when I cracked my shin, into the foot rests of my chair, and my hip off the armrest as I span myself round, to slump awkwardly onto the cushion. I may have made it to being seated, but there wasn’t the slightest chance of me going anywhere, at least not at that very second.

Adam had jumped to his feet and was standing in front of me, in less time than the whole thing took. He was desperate to do something to help, anything. I was too busy inside my head, trying to sort out what had just happened and what was happening then. The numbness was spreading, all the burning and stabbing had been replaced, but more than just numbness, as it felt like a thunder cloud. The numb feeling was the cloud, and electric shocks that were firing off all over the place within it, the lightning. Adam was desperately holding onto different parts of me, asking questions and trying to help, but I was too confused by it all, to make much sense. I knew he wanted to help, but I just wanted him to leave me alone and definitely not touch me. I knew I was snapping at him, it wasn’t meant to sound the way that it did, but I had to stop him from possibly making it worse, as he couldn’t possibly know what was happening inside my body. When you are tired, confused and in pain, it is hard to make sense and even harder to be considerate for others. My snipes and demands weren’t supposed to be that way, it was just how my body felt, appearing in my voice. When I wouldn’t let him touch me, he offered to push me to the bathroom and to help me do what was needed before bed. Again, I answered badly, but he left me at that moment to do whatever I needed to do by myself.

I know that Adams intentions were well meant, but he, like everyone else who isn’t in a wheelchair misses. My increasing agitation wasn’t all coming from how I felt, there was much more to it. I was sat in my chair, in a position that is firstly, like parts of most homes, difficult to maneuver in. If I had been on my feet, I would have just quietly moved both out of his reach and out of the room, without any sniping. He had me trapped, I couldn’t move at all, not even by an inch. It doesn’t matter how much you love someone; that sort of position; plus the invasion of personal space; especially when you are already distressed; is never going to bring the best out of any of us; add in everything else, and I hope the picture is clear. That, though, is a side issue, it was the everything else, I am supposed to be writing about. The last thing I said before Adam moved out of my way was, “I have to do this myself”, I kept on saying it all the way into the bathroom and in my head, the whole time I was there. When I emerged again, I was both calmer mentally and physically, I was also able to explain to Adam, what had been going on.

I didn’t have the slightest doubt, that it was the fatigue that sparked all the sensations. Sensations aren’t dangerous, it is rare that I have fallen because of sensations alone, especially when I am already aware of them all being heightened. If I let sensations stop me, I would do practically nothing. Yes, I could have let Adam take me to the bathroom and help me, but that wasn’t really in the long term going to help me at all. I am bitterly aware of the limited use that I make of my physical strength and remaining abilities. If I were to give in, stop using them and letting him do everything for me, well, the long-term result, would be a body that is less and less able, to do anything for itself. Sensations, don’t stop me from taking a couple of steps, from chair, to loo, or anywhere else. They can be painful, upsetting and unsettling, but they don’t do any real harm, I have to treat them that way, I have to carry on as though everything is normal, or I’m giving in.

If, on Monday, I had just spoken to that doctor on the phone, something that could have easily been done, as I didn’t go through any tests or examinations, I wouldn’t have been going through this or the hundreds of other things that have happened because of it. The medical profession is blinkered to the conditions they specialise in. I have been frequently asked by consultants what PRMS is, they don’t understand even the effects of MS and PRMS is a bigger and badder version. The majority of hospital visits aren’t necessary and people like me, aren’t just like everyone else, annoyed by wasting time, we’re actually made ill by it. Our healthcare systems don’t understand that, and neither do our specialist unless it’s within their specialty. Today is Wednesday, I don’t know when this will end, but I’m sure, the doctor I saw hasn’t even given me a seconds thought after I left.

Please read my blog from 2 years ago today – 11/11/2013 – A night of note

I seem to be in a run of bad evenings, I was fine all day yesterday during the day, other than when I went for my nap, lying down seemed as it often dose to trigger my lungs into complaining, but that’s nothing new. I often wonder how it is that pain can be slept off, I know it can, as I do it all the time, but you would…..


I found myself stupidly upset yesterday. I had gone for my afternoon sleep and as I always do before I went I had planned out in my head what I was going to do when I got up. I had taken my time in the morning not really writing or going thought my tweets with any great speed, just taking it easy with a gentle day set out for me. When I got up from my sleep I came back into the living-room expecting to just switch my computer on and get on with my plans, I couldn’t. Adam after years of nagging had decided to surprise me by washing the white wall behind my computer desk. It was taking him longer than he thought it would, not surprising to me as I used to wash it twice a year and it was over 6yrs since I was last able to do it myself. So what upset me? Well that is simple and I think many of those reading this who have damage to their brains will totally understand. I have damage to my frontal lobes and my emotions are closer to the surface if you like, I also can’t cope when things are not where they are meant to be. Adam thought he was doing something really nice but he was succeeding in scaring the hell out of me and I couldn’t hide it.

When I entered the room the first thing I noticed were some ornaments that should be on top of a unit behind my desk were on the fireplace base surround. At that second I felt agitated and I was trying to calm myself when I started to see loads of things out of place and when my eyes eventually found him, Adam on a ladder cleaning the wall. He was where I had to be and everything was wrong. To most of you reading this it will sound really nuts, but I was scared, as with everything were it shouldn’t be meant I didn’t totally know where I was. The space that is always kept set and unmoved was in chaos. Worse still the carefully made plans were also in chaos, as I couldn’t carry them through, I couldn’t get to my PC. There was a small logical voice inside me saying it’s ok, calm down, nothing is wrong, but it was just too small.

Adam could see my distress and came down off his ladder apologising and explaining that he was trying to do something nice, as it was all meant to be done before I got up. I knew all that but my confusion and distress were over powering everything. He stayed calm and spoke to me and I slowly calmed as well, the wall still isn’t finished, as I had to complete my days plans, I had to get to my PC, it was all too much for me to not continue the plans. Once I was sat in my place I calmed down slowly, Adam was great at just letting my calm down and settle into what was happening, there were a few tears as they don’t obey any commands to stay in my eyes and off my face, but for once they didn’t last.

It is really hard to put into word that feeling when something small makes you feel as thought the world has flipped into total madness. I have never known in my adult life anything that would match it before the MS caused it, so to call it agitation, confusion and fear is about all I can say, I can’t compare it to anything else other than once I was in a small car accident, I wasn’t hurt but the shocked fear is a similar feeling. Probably why some use the phrase ‘it was a car crash situation’, I do know it is illogical to react like that but once triggered finding and holding onto logic is impossible, once it is in control it takes time to pack it back up and slot it into place again. I don’t know if you can imagine having that feeling in somewhere that should be a totally safe place to be, your own living-room.

I have written before how I really don’t like things moved and Adam knows it better than anyone else, but doing so with all the best reasons in the world, still really upset me, if he had warned me, I know his surprise would have been ruined but if I am warned I have more control, as I would have played through the worse cases possible and I would have planned my day differently. If my life isn’t the same, isn’t under-control I loose control, not being in control of my own mind is one of the scariest parts of MS, and if you as an outsider so me when I am like that you would list me as mad, completely certifiable. For that short period that is how I feel too.