A little understanding

What is it about humans that we insist on making our lives more complicated than needed. I became of a small error caused by shifting from one site to another, the links in my old posts, of course, don’t work any longer. I had this mad idea that I could correct one page a day, as I work through adding the links to my post from 2 years ago that are at the bottom of every daily post. It is a total nightmare! I can’t find most of them now and it has made a mockery of some of the subjects as they rely on the links to make sense. It won’t matter until January, as the old site is still there just now, but once it closes, none will work any longer. I thought that blogging was supposed to be a relaxing and soothing process. Somewhere that I could de-stress, sort out my head and set off with a smooth start to my day, not a bundle of aggravation. I guess it was one of those not so bright, bright ideas.

Adam has just left for the day. Odd for a Saturday, but it is his mother’s birthday, so Adam and his sister are spending the day with her. I am very fond of both his mother and his sister. They welcomed me into their family without question. Something that I don’t think all families would have done when their 20-year-old son brought home his new girlfriend who was 17 years older than him. I was simply welcomed in and became part of the family almost instantly. When a couple of months later we announced we were getting married, they were delighted. Once my health deteriorated and getting out and about was not quite so easy, I became used to being left out of all family celebrations. It was my choice really as they did at first make a point of coming here once I wasn’t up to trailing all over the place. Unfortunately, his family have never seemed to understand the concept of time. At first it was just them being late on arriving and wanting to stay long past the time I should have been asleep. Then on one occasion, a few years before I was totally housebound, I had invited them for Christmas lunch, they arrived 4 hours late. I declared to Adam that I was never inviting them here again for any meal. I expected Adam to be on their side and I was ready for the excuses, the reasoning as to why I was wrong, there were none. He totally understood and actually felt the same way. He knew exactly how much work and planning had gone into that meal. He knew I had started to cook and prepare everything days before and he too had put in a lot of work towards it. He had seen the struggle that some of it took and how much pain and fatigue I had put up with, just to get things right. Importantly, he knew what it all did to my health. He knew that I was going to be paying for it for days after as well. Yes, it was my choice to put myself through all that, but that was part of my gift to them, on that day. Although his family knows how ill I am, they don’t live with us or see me day to day. They are really nice people and are caring and loving, but that one instance provided a perfect example of the difference between knowing and understanding.

It has taken my many years to accept that most people, no matter how well they are taught about anything, many can’t make that step over into full understanding. It requires empathy and quite simply, empathy can’t be taught. It may be because I have led what can only be described as a dramatic life, that I find empathy for most situations, incredibly easy. There is one huge problem with that, it is draining and it is often painful. I came across the other day someone complaining about a doctor they had just seen as he had been a little cold and lacking in feeling. I realised from the way they had written their post, that they had missed one simple point. If a doctor or a nurse were to feel true empathy for every patient they saw, they would land up in the mental health department as patients. Clearly we all expect a certain level of “bedside manner”, but to expect anything more than that I think is unreasonable. The medical profession does an incredibly hard job, none of which I would want to do. Our doctors are professionals, not our buddies and I can see that that distance has to be maintained these days. Gone are the days that you invited the family doctor to christenings and weddings and sent them Christmas cards and gifts. They have become more like an oil mechanic who you respect for their knowledge but don’t want to hug. It’s almost impossible from that one post I read to work out the sort of person who was actually writing. But there is one factor that comes into our interactions with doctors I think was missed, the way we present ourselves.

I knew someone years ago who felt the only way to get a doctor to do what they thought was needed, was to threaten them with legal action. He took great pleasure in telling them how his father was a top lawyer, in the position to squash them if they didn’t get it right there and then. On one occasion they complained to me about the attitude of the doctor, they had found them slightly aggressive, I wasn’t surprised. Just like family, we expect our doctors to understand. Surely, they, if there is anyone, has to be the one person who knows what we are going through. I disagree. I along with many other women I have met, actually believe that midwives shouldn’t be allowed to practise until they have had a baby themselves. There is something incredibly annoying about having someone standing there telling you it doesn’t hurt or it’s easy, just push a little more or worse don’t push at all, when they themselves haven’t done it.

Everyone who has a chronic illness seems to have one thing in common, we want to be understood. We aren’t looking for people who pity us, we’re not asking to be waited on hand and foot, we just want understanding. We’re looking for almost the impossible to find. The only ones with a chance of understanding us are those who have the same illness or those who live with us 24/7. Even those who share our condition, might not fully understand as there are so many variations, phases and combinations, make that almost impossible as well. We might share symptoms, lifestyle and aids, but that doesn’t mean we understand fully the effect on another individual, as we haven’t led their lives and we’re not them. Understanding isn’t found in books, it doesn’t come from hearing about it, I don’t think it fully comes from even living alongside us. Adam is amazing, I couldn’t ask for a better husband or carer, but even he at times doesn’t fully understand what I am going through. We can’t expect others to just look at us and know how we are. Our attitude at that second of time only shows that second, not our lives. It is yet one more thing we have to deal with, one more change that we have to make to ourselves, but it is up to us to teach all of them as well as we can. It is up to us to empathise with them if we want them to empathise with us.

Please read my blog from 2 years ago – 08/08/2013 – Adding the hours

I woke yesterday evening, yes I said evening. I was woken by Adam when he came home from work at 6pm, I hadn’t set the alarm as I really thought that I wouldn’t sleep very long, wrong! But it put to test my what if, if I slept longer…….

Notes for consultant

Well, the day has arrived, today is the day that I am heading off to the hospital to see the consultant at last. Clearly, that left me with a problem as I can’t be in two places at the same time and although I am very aware that those with good eyesight and dexterity can now type up screeds of stuff on a smartphone, I’m not one of them. With luck I could be home by lunchtime, but I might as in the past be stuck there until this evening, either way, I doubt very much that I will be up to writing about what happened. Even without the stress of the consultation an outing via a stairclimber and an ambulance isn’t my idea of a restful way to spend my day, I will be totally knackered. Luckily, I had without realising it already written today’s post, below are the details that I am taking with me in the hope that the doctor will read it and gain a better understanding of exactly what is happening to me and then might actually be able to help me with something better than the medicines provided by my GP. I am aware that the doctor will already have my GP’s version of this, detailing all the medications we tried and that I am still on, so they aren’t mentioned below as I thought that wasn’t of importance when it came to my side of the picture. All I can do is hand it to him and hope that it has an effect other than being tossed to one side and ignored.

Following the array of tests carried out two years ago, nothing other than my PRMS was found to be behind the constipation and pain that I had been living with at that point for over a year. I left here being told to simply continues with what I was already doing, but the levels of pain kept rising, the pressure and discomfort kept increasing. I was spending more and more time in discomfort and totally unable to empty my bowels without again taking large quantities of laxative. Sena no longer worked at all even when taking 6 tablet nightly, so I had switched to Dulcolax which at first worked , although occasionally I had to take 2 a night for anything up to 4 nights, at that point I started increasing the actual dose, but with very mixed success.

In January, I found myself totally unable to pass anything although I hadn’t been to the loo for about 3 weeks, I admit that I had totally forgotten about it, but I had had no feeling to say that I needed to go at any point. I took a normal 2 Dulcolax and the next morning I knew that there were stools sitting lower in my bowel at last. I tried for over an hour to pass one stool, the pain was so bad that I was breaking out in sweats and feeling like I would pass out. I had no option other than to do something I find physically difficult, I had to reach around and then also insert a finger to try and break it up. When I did I was surprised to find that instead of the tube shape I expected, what I found was more like a bag filled with liquid and with three stools which had plenty of space to move around, they were very difficult to pin anywhere, but I did eventually manage to break up the biggest one. When I did it was really soft and broke with ease, I manage to clear all three which were all large & shaped more like a fist than any stool I was familiar with. Over the next three days with the use of 3 Dulcolax per night, I passed two or three more lumps each day, each was accompanied by a several hours of pain as they slowly moved across the top of my stomach and especially painful as they passed through the left-hand corner before gravity seemed to help them move lower. I still knew I wasn’t clear so I took 5 Dulcolax, which worked, but the pain was incredible, my entire intestine seemed to struggle in the whole process until again it passed the left-hand corner. Throughout the whole 4 days, I was leaking drips of fiber filled water uncontrollably.

From that day on I have had the same and worse problems despite my doctor trying to help with different medications, I now take 30mls of lactulose twice daily which has softened the stools making them more comfortable on their journey, but it is still painful frequently painful. I still have to take laxatives to make my bowels actually partially empty once a week, but it is rare that I feel it has totally cleared. For the last month and half, everything I have passed has been no thicker than a finger or pencil and varies from formed and comfortable, to a whipped cream consistency, but I am now caught in a spiral that is making life impossible.

The worst of the pain is over the top of my stomach with two points either side where the worst of the pain is centered. On the left it is as though there is something trying to push out from under my ribs, there are two points that it appears occasionally at the same time and frequently accompanied by what I would call a pulsing vein sensation. It is a sharp, crushing, yet cutting pain and causes a true feeling or pressure. The pain on the right is also just under my ribcage but is more a gnawing, sawing pain, which again has a strong pressure to it. It is normal that the two points are joined across my front by a band of pressure/pain. All of them act as a trigger to a problem that I have with both my diaphragm and intercostal muscles, when triggered they go into spasm and make it hard to breath beyond a shallow breath pattern, one that often makes me light headed. I also get strong points of pain low in my right-hand side of my abdomen and just to the left of my belly button, but there is a general ache across all of my abdomen a lot of the time. When things are at their worst, I can’t even bear to lay a hand on it as the pain is too much to stand for more than a few seconds.

Until January and for the previous 4 years I have slept between 12 and 13 hours out of every 24. I go to bed at 9pm and slept right through until 7:30am, plus took a nap of 1 or 2 hours every afternoon. Without that amount of sleep, my PRMS goes into overdrive and I am left feeling incredibly weak and ill. Since January, I haven’t had more than two or three-night sleep in a row, then 2 or 3 broken nights due to pain, which is causing loads of health issues and is a huge impact on my life. During the day, I am now nearly always in discomfort at best to true pain that breaks through all the pain control medications that I take for my PRMS. On days when the pain is bad I also spend much of the day feeling nauseous and I once again taking Metoclopramide most days at some point. Although I have never had success, I still always try to use relaxation techniques to realise the pressure and spasm, but when the pain at its worst, I have in the past few months been taking more of my 10mg Morphine booster pills, frequently they haven’t been enough and I am left still in a lot of pain. I am aware that Morphine along with my other drugs will be playing some part in the constipation, but life without them would be unbearable. The combination of the pressure from my guts and diaphragm spasms is now causing pain over my kidneys and something is without a doubt interfering with my ability to empty my bladder or hold onto its contents at times. This too is an issue that I have had in the past, but it had settled for quite a while, now it is becoming increasingly annoying to say the least.

It appears that the nerves that move food through my system are not working correctly, which my GP is in total agreement with, I believe that there are also areas that go into spasm meaning even when there is pressure from behind to shift the stools they can go nowhere due to the spasm ahead. Which is why laxatives have more success in causing me pain rather than making my bowels empty. Once the stools actually make it to my lower bowel, they normally leave me with no problem, it is getting them that far through me that is the real issue. I have tried suppositories as well as laxatives, but they come with two huge issues, firstly getting them into me, frequently, I simply can’t reach, add in my poor dexterity and the whole process is highly frustrating as well as difficult. The second is the painful one, suppositories trigger spasm that run from my rectum to my vulva, it is like someone grabbing me with pliers, gripping tightly and twisting. The pain also goes deep inside and I can’t break it in any way.

I am now more a grazer more than eater, but I am careful that the majority of what I eat contains fiber, which not being a meat eater is easy and that I drink at least 2 liters of liquid every day. I am also careful that everything is caffeine free. Even with all the care I take, even small quantities of liquid can be enough to turn a quite spell into discomfort or worse, as in the last 4 weeks my actual stomach seems to have joined in. There is no guarantee ever as to what I can eat or drink at any given time of day. Almost everything just increases my discomfort, but I do eat enough to more than just keep me alive. My mobility is poor, something I can do nothing about, but I still try to move around as much as I can within the house, even when sitting I do my best to move my upper body around in the hope that the changing position helps with letting things move inside. Even when I sleep, I know that I move very little and spend the entire time night or day flat on my back as I can no longer turn myself, not even onto my side by myself.

My average day is now spent in a mix of pain and discomfort from my pelvic level right up to my throat, as each spasm seem to trigger others, there is no relief, even after going to the loo if I am luck I might get about half an hours peace before it starts all over again as the contents of my gut move forward to replace what has gone. Over the last 4 months, it is clearly getting worse and worse, I am at a total lose as to what to do to relieve it.

Fingers crossed, when I write tomorrow I will have some news as to what happens next, I do have a horrid feeling that it is going to start with more tests, but I don’t have the slightest idea what they can do that hasn’t already been done and trust me, I will be fighting the whole idea of another endoscope as I can’t see how it will help spot nerves that aren’t working. It isn’t the endoscope itself that I have a dislike to, it’s not comfortable, but not as bad as you might think, it the two days before of not eating then drinking the most disgusting substance known to man. I have never once managed to drink it all and I don’t know how anyone could. Until tomorrow then……

Read my blog from 2 years ago today – 19/05/13 – Happily facing mortality

Adam managed to get a few hours overtime yesterday, so I had an extra day to myself as he went in to pull records for Mondays clinics, it seems that the NHS are just as bad as many companies are at managing the number of staff on holiday, but still having enough to do the work should anyone go ill. I hate to blow my own trumpet, but I had that one beat…..

Determined to make a change

I never realised just what I was taking on when I decided that I was going to keep this blog, it’s not that it is a hard thing to do on most levels, but it can be hard to be objective about something so personal as my health and my life. I have always tried hard to see things from others points of views and to appreciate that my view may not actually be right. I know that is the reason why throughout my writings you will come across reminders to the reader that I am not a doctor or that it is my belief or something that I have read. I have always thought that it was a good idea for all of us to stop from time to time and to look backwards and question ourselves as to our reasons for something we did or said and to just double check if we would still do the same thing or if we have learned with time that we did actually get it totally wrong or completely right, as if we don’t question ourselves, how do we grow. Those who have read my blog from the start will know that throughout it there are stories from my past, some have a medical connection and many of them are also medical disasters. I don’t know what it was that made me start to think about it yesterday, but I have always held to a view that there really are few things in life that complaining or money can fix and that although there were several times that I could have made a claim against a doctor or a hospital, I never have done, on the principal that they are humans and humans make mistakes and accidents happen, but yesterday, I began to change that point of view.

I think it was triggered when I was writing about the fact that I had been to see the consultants at Gastrology two years ago and they had done their tests and dismissed me with the words it is your MS and without the slightest bit of help as to how to manage my failing intestines. I guess I started to get angry about it, just as I got angry a few days ago about the fact that much of the world is closed off to those of us who are ill and I began to wonder what gave them the right to treat anyone that way. They knew just as I did that as my PRMS progressed that the situation with my bowels wasn’t going to get any better, they knew that I was already on MST and that that was going to be increased as time past and that Morphine is a drug that aggravates constipation, so sending me home without any sort of management plan, or at least a list of the best drugs to use to alleviate the problem, just wasn’t right. I know that I have a brain and that I did manage it myself for the first year, but when it started going wrong and the pain just kept building well I did try asking my GP for help, he of course referred back to their findings and I expect, equally dismissed it, other than prescribing the only medication I never managed to get to grips with. I know I have said before that I don’t blame my GP in any way for this mess, he sent me to the specialists and they told him what they thought, although I would actually quite like to see those thoughts, but I digress. Since December, I haven’t had a moments peace from discomfort and long periods of pain along with shorter periods of acute almost unbearable pain and the more I think about it, the more angry I am getting about it. I can’t get it out of my head that if they had handled things better two years ago, I wouldn’t have had to have gone through all this and I wouldn’t be in the position that I am in now.

I have always found standing up to doctors difficult, simply because I was brought up not to. I come from the generation where we were told that doctors where people of authority and they knew best, so regardless of how wrong or how much pain and discomfort you are in, what they say is always right and fighting that is hard. I know when we saw the last doctor at Gastrology that I was rather meek in my approach, I just accepted that they had found nothing other than my MS and when I asked what I was to do about the pain and discomfort or how long was I to leave myself without taking laxatives and how strong a dose I should take, well the answers weren’t good enough, because they didn’t really answer it at all. The other day I asked how do you knock on doors when you can’t get to that door, well this is one door that I am being sent to and it is one door that I have at least a chance of knocking on hardly. I am not going to go in there all guns blazing, that would be stupid, but I am not going to accept being sent away without at the very least a system in place that deals with the issues I have and hopefully at least one or more doctors who have at the very least a clear picture of how the whole situation impacts on someone with PRMS or any other long-term condition, especially when they are housebound and can’t get assistance from the system the way it is run now. I still don’t believe in suing the medical profession at every turn, but I do see that if I don’t make my views knows as widely as I can, if I don’t try to educate them by showing them what their actions from 2 years ago are responsible for, that nothing will ever change, nor that the view that some patients can just be dismissed because they have an underlying condition that is causing it, just isn’t good enough.

I don’t have the answers waiting for me to just read out to them, but I do know that regardless what they want to do, there has to be something better than what they are doing right now. I told them two years ago on my first visit to Gastrology that I already had a diagnosed issue with my Vasovagal and when it was diagnosed the heart specialist had said that he felt due to my description that my PRMS was as he put it “Playing with my Vagal nerve”, which is responsible for many other functions that I have or have had problems with, such as breathing and interestingly although not named when they diagnosed my COPD, the Vagal nerve is the nerve that controls the mechanics of breathing, exactly the part my PRMS is playing in the problems I have breathing. It can cause as I also know spasms in your throat making it hard to eat and speak and surprise, surprise, it also control the processing of food right the way through our bodies. I told them that I believed that the nerves to my bowels were then failing, something the MS nurses agreed about, but not my GP at the time, he at least now agrees, all of that was ignored. I know I have to tread carefully and maybe not lay it out so blankly as I just did, as I also remember the doctor smirking when I told her what I knew at that point.

This time I want action of some sort and I also want them to learn that PRMS can cause all these problems and that they don’t just go away, the patient might for a while, but we come back worse than the time before. I don’t want to be dismissed and I don’t want anyone else with my condition to be dismissed ever again. Now, I just have to work out how to make it happen.

Read my blog from 2 years ago today – 16/03/13 – Body listening > http://bit.ly/142pRv8

Sometimes I think that I should start making a list of things I talk about on here and the favorite phrases I attach to them, with a limit to the number of times I can say it before it has to be changed. Then I come back to ones like ‘listening to your body’, how do I change that, how do you say it in another way and hold on to its importance and its value, I don’t think you can…..

It’s a pain

Mothers day, so yes I am on my own. Adam and his sister always go to see their Mum on this day and they always go together as it is a rather long hour and a half on the bus there and back again. They did try this year to get her to drive into Glasgow so they could take her out to lunch, but she wasn’t having it, she wanted her family in her home for the day as she said that all the restaurants would be too busy, understandable on that level. So anyway, he was up at 7:30, dressed and gone without any time to say much other than Goodbye and have a good day” and he will be home in time to say “Goodnight, I love you”.

I have to admit to feeling rather sorry for myself this morning, despite going to the loo yesterday and being as sure as I could be that that was it and I would get a few days peace at last, within hours it was back, well not literally. My stomach was flatter and soft, but all the pain and discomfort I have lived with for months, was all there as though nothing had happened and it is still here this morning. It was when I got up after my nap that I first felt it, there it was the unmistakable feeling of pressure right across the front of me and I was feeling sick again. As the hours past it was getting stronger and stronger, even though the only thing I had eaten since was my lunch, I honestly would have said I had several days of food stored waiting again. I did try several times to press my hands into myself to check over and over to see if it was possible there had been more hiding and it had simply moved but other than the normal strip across the top, I could find nothing behind it that could possibly be causing the pain. I kept telling myself that it was possibly a reaction to being clear, that my guts just needed the chance to readjust and that it would pass, but it is still here this morning and even woke me up with pain low down in my stomach, a place that doesn’t normally hurt until the last couple of hours before relief. I have had pain like this for a couple of hours after having taken too large a dose of laxative, but I didn’t, I have been really careful about that since the last stupid mistake and even that one, didn’t cause pain that lasted right into the next day. Right now, well I would describe it as every inch of my gut is aching with a much more acute, sharp pain at either end of my body. Whatever is happening in there, it has taken another step as there shouldn’t be any pain this morning at all, nor should there have been enough pain to wake me during the night, which it also did.

When I was lying awake in bed waiting for the alarm to sound, I started to think about the appointment that my doctor is making for me to go and see the guys at Gastrology. I am so aware of the issues I have when it comes to talking to people and being able to vocalise my thoughts, those I don’t forget, that I was wondering about doing more than just writing a crib sheet for myself, but actually writing a sort of post for the doctor. I know what it is like when I go to hospital, the whole process is inclined to wipe my brain, part of the reason I am so glad that Adam is always with me, but I know even with him there, that things still don’t get said and I am also very aware of the fact that if you see them more than once, you never actually see the same doctor. I found myself coming up with the idea that it might be an idea for me to just write it all down, being sure that everything is there and without any floweriness around, just keeping it to what is important and what the effects on me are. That way with any luck it will be scanned into my notes and on return visits or if they are discussing it with other doctors, my words are there for them to refer to, rather than what they might or might not personally feel is important. One of the things that I have learned is different doctors all have their own personal trigger words and unless they hear them, they dismiss what appeared around the word they were looking for. I have lost count of the number of times that doctors have asked why I didn’t say something before, when I had, I had just said it in my own style. I am also aware that one of two things also happen once you are living with a chronic condition, firstly they blame it for everything and anything that they can and secondly, once you are on strong painkillers, they forget that point so when I say it hurts, they measure me against the norm as if I wasn’t on Morphine, what if I wasn’t I would be more likely to tell them it’s agony.

It isn’t all their fault, I will take the blame for some of the miss-communications, when you have lived for most of your life with pain, you do become dismissive about it. That doesn’t mean I don’t notice it, or it doesn’t hurt, but it is normal for me, if I had never had pain beyond that of the average person out there and I wasn’t taking Morphin, I am sure I would probably have been in the emergency department long ago due to my stomach. I never thought that you could actually get used to pain, but you do, that statement shouldn’t be confused with either not feeling it or not minding it, it just becomes part of your life, just like feeling hungry or wanting a drink of water, it’s there and you live with it. I honestly don’t know what I would do if I were to wake up one day and find that I wasn’t in pain, nor did movement not cause it, nothing in my life is pain free, it’s more a case of degrees of pain. I have also totally given up on the dream that one day they will give me something that will totally take the pain away, managing it seems to be the best available without putting me into a coma or complete zombie state. It is one of those tough things that goes hand in hand with illness, decisions, knowing and working on, what is right for you. We all have to decide what we can deal with and what we can’t, do we want to feel as though we are on drugs or do we want to have a head clear enough to be able to function as a person. My decision has always been that I want to function, although, I have to say that within that, I would kind of like to have the option of having something to hand that I could take when things get too much. Pain is wearing, it eats you from the inside out and there are is no escaping it. I would really like the opportunity to escape should I want to, that would knock me out for 24hours, long enough to let my body rest and restore, only if it is slight.

As much as I would love to get my doctor to read my blog, no GP has the time to read all their patients ramblings, but if he did, well maybe we might get a lot further at actually maybe not beating this thing, but at least taming it better. I know that on the whole I am very lucky to have the GP I do, even though Adam seems to think that he should be coming to see me for a chat every now and then, but I at least have a doctor who is open to me calling him and saying, “please can I have……”, without getting him upset with me. I am sure that the day will come when the answer will be no, but as thing stand at the moment, we are doing not too badly together, as until he can give me a totally new body, well all we can do is muddle along as we are.

Read my blog from 2 years ago today – 15/03/13 – Endoscope number two > http://bit.ly/WjFD1a

I have to say that yesterday went very smoothly. The ambulance actually arrived on time to get me to my appointment and the whole process of the endoscope was painless and simple, I did like everyone gag as it entered my throat, which had been numbed with a sedative spray, but past that first few seconds although uncomfortable it was all rather painless. The only pain I had at all was after, I was just about to put my coat on………

Damage done

I was woken this morning once again by pain, but this time not in my stomach, but around my ribs. Once again, it was the razor blade like pain that woke me, it is so sharp and so grinding that there is no way of ignoring it for a second and like the majority of the pain in my torso, always worse when lying down. Just to add to the mix, Adam was happily snoring beside me, but I know it wasn’t him that woke me, it was the pain, as that was all I noticed until I was fully awake when the sound started to filter into my brain. I am still not totally used to him being there, what I do know is that should I wake during the night for anything, the first thing I do is check that he is there. I find myself reaching across the bed until my pinky touches his skin and then I go back to sleep, content to know he isn’t still through in the living room, hunched over his laptop or asleep on the floor. When I woke I found myself with the quandary I have had every morning since he returned to sleeping in our bed, do I use the mattress lift or not? I find myself lying there for a few seconds, trying to work out what my muscles will take or not, can I manage to get myself from flat out to sitting, or am I going to have to press that little button and risk waking him? He has told me not to even think about it, if I need it well use it, but inside I still fight with myself about it, this morning I had little choice, with the pain in my ribs slicing through me when just taking a breath, well the chance of no pain on pulling myself off the bed, was slim. I took out my earplugs and removed my sleep mask before touching the button as I wanted to be able to react quickly should he react at all, he didn’t, but neither did I raise the mattress as high as I might have, just enough that when I pulled on my stomach muscles they felt as though I could manage the rest. It isn’t just that he has told me not to worry about it, but also the fact that he can sleep right through a full minute of the alarm clock sounding, that should tell me I have nothing to worry about, if he can sleep through that, well he can sleep through the bed moving slightly, but I guess my need to care is one thing that hasn’t changed inside me.

The pain I had in my stomach all day yesterday seems to have calmed down overnight, it wasn’t the terrible pain that I have had for the last week or so, but it was constant and constant can in many ways be worse. The pain has settled, but nothing else has happened at all, I forgot when I was talking to the doctor to ask how long I should give his medication plan to work before upping it to the next level. Tonight will complete a full 48hrs passed without any change and as I know without a doubt that there is rather a lot waiting to go, I suppose I should raise the dosage tonight and give that 48hrs and so on, if there is still nothing, well I will phone him then, I just hope that I don’t have to. It doesn’t matter how long I have been ill, I still have the stupid fear that my body is playing tricks on me and that the doctors from years ago who wouldn’t help me in any way were right. I find myself scared almost that this plan will work today and that I will go to the loo, that may sound nuts as that is the one thing I would love to happen, but you see if this works at this level, it would sort of confirm that I am worried about nothing and creating it in my head. That idea started years ago, when unbeknown to me I had RRMS, my GP would send me to the hospital as he couldn’t work it out, but by the time I got an appointment I was back in remission, so they found nothing and told me I was fine. I went home feeling as well as I did when I went there, but with a flea in my ear regards wasting their time. Months later, it would happen all over again and I was caught in this mess of being ill and with no one believing me and so it went on. It is so ingrained in my head, that I know without a doubt that when it comes to talking to doctors, well I have learned to downplay everything as I don’t want to be left looking stupid and when they do prescribe something for me with confident words that what they have prescribed will work, when I know inside it won’t, I still fear they may be right.

33 years of working out for myself what works and what doesn’t, doesn’t stand for anything, when you have this little worm of doubt that was planted so long ago, still wriggling and twisting around in your mind. For 20 years I dealt with all the problems that RRMS throw at me by myself and when it changed to PRMS, suddenly I had the medical profession behind me and they have managed to help me so much, but they can’t undo what they did. I am totally sure right up to my dying day that I will be saying, no don’t call the doctor, not because I don’t need help, but because I will be scared that I might just be wasting their time. All the logic in the world can’t undo a single second of something that is so deeply engrained in your mind. Oddly I find it easier to forgive and forget the things that happened to me in my childhood, than I do to get past what doctors did to me as an adult. I can only assume that that is because I was an adult and it was the so-called caring profession that managed to get things so wrong. It isn’t so much the misdiagnosis that still annoys me as the way I was treated and what that has done to me in the following years. I am sure that if I hadn’t been left feeling like I was a nuisance, that I wouldn’t have lived as long as I have in as much pain as I have been in. It is odd how someone who clearly has a logical thought pattern and the ability to work things out for themselves, just can’t undo one small thing and put it where it belongs, not in my brain.

I won’t be alone in this position, if there is one thing that being part of a huge community of people living with chronic illness had taught me is, none of us are the only ones, there are always others going through exactly what you are, at the exact same time. Maybe the day will come when this will end, if it does I am sure it will be brought about when diagnosis is taken out of the hands of humans and is done by a machine that can see everything and removes human error. I hate to say this, but when that day comes, I believe the numbers of us will rise hugely as all those who are struggling alone because they don’t want to be made to feel like a waste of space, a liar or an idiot, will actually get the diagnosis they know without a doubt, is just waiting to happen and no one after that point will ever have to wait again.



Please read my blog from 2 years ago today – 07/02/13 – Body Check Match

I have just read through “Body Check” and “Body Check 2”, clearly the style I chose to write them both was different, but I made the decision to not read the first before I wrote the second as I felt that way I would be able to write as is without the first in mind….