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……






Think what you want

All I want for next Christmas is a brain, well, I clearly didn’t get one for this Christmas. One simple task, that was all I had to do last night and guess what, it went totally wrong. Mind you, it did introduce me, to the totally new experience, of sitting on the settee, holding a crystal glass filled with frozen peas, sweetcorn and carrots. You guessed it, I burnt myself. All I had to do was take something out of the oven, add a topping and pop it back in and I couldn’t even get that right, despite making sure I was holding a thick towel in my hand. The mistake started 15 minutes earlier, I had placed a bowl holding some camembert into the oven, but as I placed it on the tray, I forgot to take out of it the handle needed to bring it out of the oven. No problem, I thought, as I returned armed with the towel. The first thing I did, was to put the now incredibly hot steel handle on the counter, so it would be cool when Adam came through, to take the cheese out when it was ready. I opened the top of the cheese, removed the covering rind, then sprinkled the topping on. Then I reached over, picked up the handle, so I could put it safely back in the oven. Spot the mistake, yes, I picked up a roasting hot steel handle with my bare hand. Why? I haven’t the slightest idea, I had the towel sitting on the open oven door, but I picked up and clenched a piece of red hot metal. Clearly, it isn’t the best thing to do to any piece of bare skin and I can actually still feel a couple of the points where it made contact. I did the right thing and ran it under the tap for a minute or so, and it felt OK. It wasn’t until about 20 minutes after I had actually eaten the cheese, that it really, started to hurt. I don’t know if my hand had just been dead, earlier, or if my senses were suddenly doing one of their hyper tricks, but it was incredibly painful. Hence, the glass filled with frozen vegetables. Trust me, if you burn the palm of your hand, it is the perfect tool, as it reaches every part of it at once and stays frozen longer than a plain glass.

Memory is one of the dangers of cooking for anyone with brain damage, but it’s now the reason that I don’t normally cook anything. Without a shadow of a doubt, I will either burn myself, or forget an ingredient, or even the fact that was cooking at all, until the smoke spreads throughout the house and finds me. Last night, was a typical show, of how dangerous a cooker really is, when it comes to me using it. I was happy to do it last night as Adam was in the house, what could go wrong, he was there to keep me right. I had forgotten that doesn’t stop my brain from finding some way, no matter how unlikely, to make it go wrong. Looking back, I honestly believe that my feelings were numbed at the time. I have this image in my head, that says there was a delayed reaction, almost, as though it were my eyes and delayed memory, clicking in the facts, rather than my feeling the pain. My poor hands have been beaten, dragged of doors, smashed into walls, burnt and generally mistreated to badly in the last few months, I’m a little surprised, they willingly still do anything for me at all. Yes, they object, the knuckle joints pop out of alignment whenever they choose, and I wake every day, with them so stiff and unable to flex, that getting dressed is a trial, but they still work. With all the sensations now screwed up, my treatment of them has just got worse, because I no longer even know I’m hurting them. I guess that I need to start accepting that cooking is one step too far, but I am really finding that one hard to accept.

I thought that if I stuck, to things that were in the oven, or that I had to sit over, as in the frying pan, well I was safe. The oven is far more forgiving on a mind that forgets anything has been put in it, well, at least for a while anyway. If you frying things, you can’t leave the room, not even for a minute, not even just to do something online. There has been the odd mild burn, a wrist caught on the lip of the pan, or the edge of the oven door, but mainly it’s been safe enough. I didn’t see this one coming, I didn’t even consider it. Even though I know without a doubt, that the lesson of this accident is, either plan better, or just don’t do it at all. I bet you, I will be cooking something again within the next few days. It is without a doubt, one of the hardest things to totally give up. I can go for months without doing it, then I have some bright idea, and I’m off again, wasting more food than I eat. It is part of the problem of being on my own all day long. Adam will do anything for me, if, I let him, but he has to work. It is one of those facts of life, that I think of eating something that needs cooking, when he isn’t around, If you think about it, I am never alone for longer than 4 hours at a time, I could wait, but I never do. The problem is, I used to be a great cook. Part of me, just can’t believe that I can’t do it any longer. It’s that part that taunts me, saying things like “A 5-year-old could do that!”. That’s part of the reason I don’t leave my PC that much, you’d be amazed what a 5-year-old, thinks it can do, that I can’t.

Being an adult, used to be fun, now it’s one big danger zone. Clearly, I’m not ready to give up on the cooker, maybe I should be, but I’m not. I guess it’s like everything else, I will eventually just decide that it’s that time and it will go. You can be lectured by OT’s and family forever, the truth is, we know when the cost is too high, and that’s the point when it will happen and not before. Just as I knew, the time for the wheelchair had arrived, or that I couldn’t climb ladders anymore, no one told me, well that’s a lie, loads of people told me, but I decided, because I’m not as stupid as I look. It still seems to be one of the things that all the medical profession hasn’t quite worked out, we might have brain damage, muscles that don’t work and no balance to talk of, but what brain we do have, is still ours.


Please read my blog from 2 years ago today – 26/12/2013 – A strange Christmas

I have no idea what was wrong with my yesterday, long before I wrote my post, in fact within an hour of getting up, I was in tears. For no reason at all the tears just kept taking over, I had no control over…..

Controlling Reality

Another night when I ran to my bed as soon as the TV let me,it’s mad the way that we let that box in the corner rule our lives. I know you will say why not record but I record all evening all evening the best of what I’m not watching, that way I have reasonably good stuff to watch during the day. I was really in a mess yesterday and the day before from about lunch time onwards, just like both day’s I really don’t feel that bad at the minute, but I am just waiting for my brain to shut down and for me to get lost in a fog filled cavern with custard up to my waist. I couldn’t order my thoughts or manage to keep getting things done, I just went round and round in circles, not completing things and not knowing what to do next. When things are that bad it is a strange place to be, on some levels you don’t care as what is there really to care about, I’m alive and able to situp so I’m OK, but then there is this feeling that I am out of control and I have no way of sorting it all out. I feel numb and as though there is the huge bag of cotton wool around me, keeping the outside world away from me, but not allowing me to get through when I want to. I sort of float from one place to another pulling myself in line for a few minutes, then loosing the control again, and I am just waiting for the day to pass as fast as it can so that maybe tomorrow I will find my personal balance again.

I am sure that many people spend their lives there and I maybe I will one day to, and would that really be that bad? To be honest that is a hard question to answer, when I am clear enough to think it all through and what it would really mean then maybe at this level I could live there. If it was worse then yes it is that bad, and it is not a place I want to be, now or in the future. There are these levels of acceptance, marks in the sand that I don’t want to cross without a way back, anything is acceptable if it is limited, if you have the reward waiting at the other side, that there are good spells to take shelter in. Without those clear areas, it is really hard to know what it would be like there for ever and more intensely than anything I have been through so far. What I do know is if I was in the really bad phase, worse than what I have now, I would need someone with me all the time and that is the place I don’t want to think about. Strangely it is actually something that I and others would have to measure it by would be a case of do I have enough about me not to put myself in danger, as in not burning the house down by trying to cook something, rather than looking at the things I can do. I just had this silly image in my head of myself sitting on the floor in front of our gas fire with a pan, if I’m that out of it, please world line up to shoot me.

Everything seems to gang up on me when I am in that type of mess, it is almost as though it is a conspiracy by my entire body, the pain levels rise all over me. The other day I mentioned needing to use my catheters again well they are part of it as well, everything just stops working. Last night when I went to bed the pain everywhere was nuts and that included all the pressure and pain spots across my entire abdomen, proof to me that my bowel problems are all part of my MS. The only thing that was no worse or changed in any way were my lungs, but this morning when I woke my throat was tickly for the first time, once I had had my coffee it settled and now it actually feels a lot clearer, so not part of but possibly the catalyst. I am tired this morning just as I have been every morning recently and again I want my bed, so I guess I am heading for another afternoon and evening just hanging in there until I can sleep out the remaining hours and a new day has begun.

I know that the likely hood is that this is just a phase, or a flare coming from my chest. I know that in a week or so, I will probably have actually forgotten that it even happened, as that is the way my life is and one of the reasons that I write, as Adam reads and he will always be able to find the information that Doctor needs in here, even if my memory can’t find it in my head. Right now I have bad spasms in my left leg and I can feel the fog moving in minute by minute, so good bye controllable reality, we seem to be slipping a part again.