Please let me be human

Posted on February 4, 2016 by livinginalimitedword

Last night, I found myself snappy with Adam, which is a truly rare thing. He realised within seconds of being home, that I was once again exhausted and that I wasn’t in a responsive mood. It’s not common for me to be like that, normally, it doesn’t matter how I feel, I manage to put on that happy face and make light of it, but not yesterday. Everything about yesterday was extreme, hence yesterday’s blog. I quite honestly didn’t know how to deal with another minute of that day, I was done before it even started. Every element that I have spoken about over the last few weeks, for some reason all appeared together and it got the better of me. I can cope when it is just the constant pain or the endless tiredness. I can get through any day where they are at levels where I can make light of them, or even if one or the other is off at an extreme, but yesterday, they hit me like a mallet, and there was no escaping either. Not even my Morphin boosters were doing their job, quite to the same extent as normal, in fact, nothing was working as normal. For me to be off hand with the person I totally adore, was just the final symptom of a day, that was filled with extremes.

Adam, like so many people when faced with someone who doesn’t want to communicate, who is clearly having a tough time, is to make light of life. To talk twice as much as normal, crack jokes, tell stories and constantly try to get a positive response. When that failed, he then started to ask questions every few minutes. “What is it that’s so wrong?” “Can I do anything to help?” “If I did this or that, would it make things better?” “Have I done something to upset you?” Inside, I was screaming “Please, just shut up”, but the words always come out as “No there’s nothing you can do, I’m fine”. Unfortunately, I was very aware, that my tone was saying anything but. It takes a lot for me to lose my patients with Adam. Like any husband, he can occasionally drive me up the wall, just as a wife, I am sure I also do to him. Even at my worst, I rarely feel as I did last night, and I knew totally, that it was all coming from me, not anything Adam had done.

It can be hard at times to put aside my health, and to try and be the person I am, and I always should be around him. When you have lost all your energy, when your patients with life is thin, even those we love can turn into another annoying blue bottle. They don’t mean to, and we don’t mean to feel that way, it’s just the way it is. Normally, those days are well spaced, but recently, I have found myself there too often, just wanting to swat, what are meant to be loving actions. Adam isn’t stupid or blind, in fact, the other day, he himself said, “Shut up Adam”, then mumbled his way back to the settee. He had come up here just to make sure all was well and to give me a kiss, he didn’t manage either. Too frequently lately, I have pretended that I was busy, engrossed in what I was writing or the game I was playing, not because of him, but because I just couldn’t cope with anything or anyone else at that very second. I feel guilty for it, more so, because I can even explain what is going on to me, far less to him.

Physically, there are two things that right now are getting to me. Firstly, my lungs. I am getting so much pain, not just the normal intercostal spasms, but a separate internal tightness. A times, when I take a breath in, there is pain right in the center, exactly where the bronchus splits in two. My right lung is the worst, as I have areas that are really painful all the time, others that spike out of the blue, sometimes in line with taking a breath, others when I move. All the inhalers in the world won’t help me, as this is muscular, this is all coming from my PRMS. I loose my breath at times, but more than anything, it is simply restricted. Secondly, once again, it’s my stomach. This one I really don’t get as with the increase in the Psyllium, I am actually going to the loo every three days, which is wonderful compared to how it was. The pain, though, is at times off the scale. It’s in the same area’s as normal, but far more intense and lying down or sitting, there is no relief. Psyllium, unlike laxatives, doesn’t cause spasms, it’s simply a bulker and one that adds lubrication. This pain is from spasms, so once more, that means this is my PRMS. Add in the rest of the pain that is spaced out around my body and clearly, the pain is getting to me badly. It’s not constant, but in the last three days, have been exceptionally bad. The pain alone is exhausting, but it’s not alone, as they way I feel right now, I know something else is at play.

If I could get the pain under control, them maybe, just maybe, I might feel better. I say maybe, as I am so used to living with pain, that I can’t be sure, that it is causing how I feel. My Gabapentin increase doesn’t seem to have touched these areas, I’m sure it has, but it just doesn’t feel that way. What it has done for me, is to turn down the pain levels throughout the rest of my body. At first, I thought, that the turning down of all the background rubbish was just allowing me to feel this all the more, but over the last couple of weeks, it has clearly been increasing. My Morphine boosters turn it all right down, but if I take too many in too short a period, I start having vivid dreams that disturb my sleep. The less sleep I have, the more tired I am and the worse the pain gets. Therefore, I try not to take more than one or two at a push in any 24hr period. Yesterday, I put off taking that tablet until 6:30, the time I close down my PC and we settle together on the settee for the evening. Unfortunately, they may deal with the worst of the pain, but they don’t stop the spasm and even without severe pain, they can be incredibly uncomfortable, and just as tiring. By 6:30 last night, I was exhausted, so tired that my brain just could deal with even the TV if I’m honest. It clearly couldn’t deal with Adams attention as well.

When all of this started a few months ago, I never thought then, that it would get this bad. The more I think about it, and the more I analysis what I have written over that period, the more convinced I am, that something bigger is going on. I can’t help thinking, that the increase in pain, and the growing exhaustions, are symptoms, rather than the conclusion. If I could just deal with those symptoms, then I might find out what is behind them. I have always told myself, that it doesn’t matter what my body throws at me, I can deal with it. I still believe that. What I can’t deal with, is the way it is affecting me when it comes, to how I’m treating Adam. I know, that he doesn’t let it affect him, he understands that it’s not really me, but that just makes me feel worse. He doesn’t deserve to come home to someone who it crotchety and frequently downright rude. As he keeps reminding me, “Marriage is for in sickness and in health”, what he conveniently forgets, is that we have been married for nearly 16 years and I’ve spent 13 of them sick. I don’t want to spend whatever time I have left, short tempered and snappy, but I don’t know what the answer is.

Please read my blog from 2 years ago today 04/02/2014 – Making things better! FOR WHO??

After years of getting frustrated by not being able to pick something up or dropping something without warning,I now have a new and unexpected addition. I had been using my E cig and was ready to go to bed…..

Avoidance issues

Posted on January 13, 2016 by livinginalimitedword

I just spoke to my Doctor and it was a phone call that has left me rather angry. It appears that he miss read the letter from the pain clinic and their suggestions of how to change my pain meds. Right now I am taking 900mg of Gabapentin three times a day. When I phoned the doctor last week, it was to see if I could get this raised, as I was sure that there was still room to increase it. I had this vague memory that when I was at the pain clinic, that they said this was one of the options that I had. I was rather confused when the doctor said that I was already on a dose that is above the recommended and that I clearly couldn’t have any more than that. It appears that the clinic recommended that it was raised to 1200mg three times a day, that was 18 months ago. So as of lunchtime today, I will be taking the new dose for a period of two weeks to see if it is enough to bring my pain under control. If it doesn’t, apparently, they also suggested that we try changing it to Pregabalin if that fails. I’m angry because the way he told me this today, it sounds as though I should have had the raised dose of Gabapentin ages ago, after all, I went to the pain clinic because my pain was rising. My GP, at the time, wanted to raise my Morphine, by I chose to stick to using the booster pills, as they gave me greater personal control. It has worked fine until the last six months, when I have struggled, not wanting to mention it, because of my fear of having to take even more Morphine. Normally, he is a great doctor and I have no problem with his care of me, but this, well this has angered me. I really wish that when a consultant writes to a GP, that they also sent a copy of the letter, to the patient, that way, I would have known all this and not relied on his memory. It’s totally unfair to ask a GP to remember every detail, of every patient that they have.

Over the last few years, all the old-fashioned paper notes have been transferred to computer systems. Understandably, but unfortunately, the GP system is totally separate from the hospitals one. For a very long time now we have had the right to see our notes on request, which means that you have to go to them, to be able to look through our notes. Being housebound, means that despite having the right, I can’t carry that right out. With it all being computerised, I personally believe that we should all be issued with log-ins, and be able to look at our notes whenever we choose. For someone, like me, who has a complex array of conditions, it would mean that I could keep track of all notes added, all suggestions, and what has already been tried. Consultant only writes to GP’s, either if they have prescribed a new drug, or when they have signed you back into the care of you own GP. Of course, GP’s only ever write to Consultants, when they have a patient they want them to see. The result is, that much is missed by both sides. I wouldn’t have missed these suggestions and I could have spent my time, assessing what might work best for me, plus I would be armed with all the details, that I have long since forgotten. I have forgotten so much, that different doctors ask me about, like the names of the drugs I have already tried, when and what one doctor said about something and so on. I have the time to arm myself with the info, that might make my future treatment, just that bit better. Although I have great faith in my doctors, both my GP and those I see at the hospital, the gap between the two is becoming, more and more visible as time goes on. It’s a gap that I feel I could fill, as could many with multiple conditions.

Clearly, from what I have just written there, I have removed the Duloxetine from medicine list and returned to my normal dose of Amitriptyline. Last night, for the first time since I took that first horrid little capsule, I slept right through the night until at 7:30, when I had to get up to go to the loo. I know I could have gone back to bed, but I decided to stay up, as not only had I slept through the night, but I also actually felt more awake than I had for days. The last four nights supplied only half the night in a deep sleep, and the other half, in a fitful half world, as unpleasant as the days that followed. Today, I feel like me, and that is a really good feeling. To me, I have just wasted 4 days of my life, because of my doctors mistake, as when I spoke to him last week, my request was for an increase in my Gabapentin, not a new drug, that would shred me into pieces. Mistakes happen, but that doesn’t make them any more pleasant.

Those who read my post from two days ago will know, that I had one of those horrid light bulb moments. The words “palliative care” appeared and I was hit between the eyes, by the fact I knew that the day I went onto Morphine, all though they didn’t say it, that I was at the end of the road. It’s amazing how when promoted to think of our care in one way, rather than another, that we happily carry on kidding ourselves. I remember at the time, briefly thinking this is the end, but my doctor waffled on about how there were still options and possibilities, although they didn’t name them. Clearly, their waffle was intended to pull me away from thinking I had reached the point when palliative care, something which is normally linked with the end of life care, was needed, and it worked, partially. Yesterday, that wall crumbled and I spotted the unspoken truth. Oddly, rather than pulling me down, it has left me in a very calm and subdued state, almost as though it removed not just a wall, but one that had spikes on its top. I feel as though the confusion of questions that didn’t quite make sense, are starting to solidify and showing the roots I need to go down, to put them to rest.

I have also been given a few pointers by several different very kind people, I know it’s not like I can make a list, this is an organic process, one that I will, of course, share here. I have also realised, that whether Adam wants to talk about it or not, he will have too at some point, just as I am going to have to get involved with groups like social workers, who I have body swerved at every turn. I’m getting ahead of myself, they aren’t top of my list, but they are on it, yes, I’m still avoiding them, but just like death, there are something’s in life, we can’t avoid forever.

Please read my blog from 2 years ago today – 13/01/2014 – Spasms are not what you think

I woke this morning on a bed that didn’t have the upper mattress hanging 3 inches over the edge of the lower and an elevator that lifted both sided of the mattresses at the same time. Adam and I pulled the webbing…..

The missing link

Posted on January 12, 2016 by livinginalimitedword

Would you believe that I still can’t make up my mind about my meds? I didn’t call the Doctor, I decided that I had to be a grownup and make a decision for myself. So here we go, this is my decision-making process, a peek inside what’s going on in my head, I just hope we find something. The starting point has to be to lay down the reasons and options. This whole thing is about getting my pain levels back under control. Over the last few months, they have been rising along with the increase of all the sensations that my body creates. They are inclined to trigger each other and I land up in these maddening spirals, which escaping take a rather large mallet, it’s just finding the right one. I have talked about extensively in the last month or so, about how I am being driven to the edges of distraction by a body that is out of control. If you don’t know the details, well it’s all written here, you just need to go back a couple of weeks to get right up to date.

It doesn’t take a genius to work out that living in constant pain, above the level where you are comfortable, isn’t nice. There are no painkillers that totally remove the pain, but to date, a combination of Morphine, Gabapentin and Amitriptyline have done the job not too badly. Both the Gabapentin and Amitriptyline are at their peaks, there isn’t even any wiggle room left there. Which leaves the Morphine, technically, that can climb and climb, up to unbelievably high levels and my Doctor is more than willing to raise it. It’s me who has the problem, with that.

I have this inbuilt fear of raising it any quicker than is absolutely and I do mean absolutely necessary. It’s a fear I have had from the very first time they mentioned the word. To me, Morphine is the drug of last resort, it is only used when everything else, has failed, and there is no hope left. After all, they don’t hand out Morphine for a sprained ankle, it is a drug that has a finality about it, if you like, it is the drug of the dying. I have been on it now for about 8 years, possibly 9, I’m not sure. What I do know, is that it scared the hell out of me, I took that first tablet expecting to feel drugged and out of control. What actually happened, was my pain almost vanished, other than that, nothing. I wasn’t having hallucinations or any, of the other things that for some reason I expected to. I was pleasantly surprised, but still hesitant about that name and the pictures it conjured up. MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are controllable. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years

MST is a slow release drug, and each step up has been small and without a problem. Then I started having intense pain that it didn’t touch. I was given more Morphine, but, this time, 10mg fast acting tablets, to take as and when I needed it. Lately, they have been increasing in their use, something that doesn’t worry me too much as they are in my control. My Doctor wants to increase my MST, from 70mg twice a day, to 90mg twice a day and that scares me, as it’s too close to my nightmare dose of 100mg. So OK, I know the dose level means little, as different people react in different ways to this drug. Some can land up on 400 or 500mg, as Morphine is a drug of palliative care, not an aspirin. Ouch!, now I know why Morphine scares me, I just said it for the first time, “palliative care”, that’s where I am, isn’t it. It’s where I have been for a long time, but I never said it. All they can do for me is to try and keep me comfortable and whatever way you look at it, there is only one name for it, palliative care. There, I have said it three times, it has to be real and I can’t run away from it. It’s one of the questions I want answered about the closing phases of my life, but 7 years is too far off to be able to get any real answers. Morphine scares me because, it has and always will spell out the end of life, the end of my life.

The Duloxetine was prescribed to replace the Amitriptyline in the hope that it would offer a higher pain relief. I would have to take it for about three weeks to see if it does or it doesn’t, but it’s doing to me all the things that I fear about Morphine, which is beyond ironic. I have now taken four 30mg tablets, over four days, the first was the worse and each one since, has been slightly less reactive to the previous. I am still feeling disconnected, sensations are still heightened and I don’t feel right, which I really don’t like. On Thursday, I am supposed to double that to 60mg, right now, that terrifies me, as it also means the end of the Amitriptyline. I won’t miss the dry mouth, but when it is gone, will this new drug then turn out to be useless, will I be spaced out, terrified and in more pain? The only way to find out, is to do it, but is it worth it? I could just quite simply take the uplift in the Morphine and tell myself to stop being stupid.

This is the problem of owning a brain, if we didn’t have one, life would be simple, well maybe not, but you get my point. My problem isn’t physical, it is literally all in my head. I might know exactly where I am, I might have accepted exactly what that means, but it appears, that somewhere in this stupid head, I’m just not ready to act on it. Yes, I can throw the drugs down my throat, I can sit here day after day content in my day and my life, but I’ve been avoiding those bits I just don’t like the sound of. I’ve been giving them a rather large body swerve. The odd thing is, our care actually allows us to do just that. Look it up, “symptomatic treatment” and “palliative care” are exactly the same thing. No one ever said that all they could offer me was “palliative care” because, they know the mental connections that phrase would light up. No they said, there was nothing else they could offer, other than “symptomatic treatment”. Call it what they want, I don’t think that I really have a choice here, I want the pain back under control and I don’t want to feel like I do. The truth is, that either way, Duloxetine or Morphine, the treatment is called the same. My body has made the decision, I don’t think it could have made its opinion of Duloxetine any clearer, it not for me. Tomorrow, I will call the doctor with my decision and go with the increased Morphine, at least, I know where I am with that drug, unlike now, where I’m fighting to just know who I am.

Please read my blog from 2 years ago today – 12/01/2014 – A mind in free fall

I am coming to the conclusion that there are things in life that are simply designed to drive you mad, those things that one day work and the next don’t, are at the top of my list. The charger for my e-cig, isn’t working…..

Words to live with

Posted on December 12, 2015 by livinginalimitedword

It’s been a tough week, I’ve spent all of it locked in a battle, which, although I don’t intend it to get the better of me, it is wearing me down. Those who know me well enough will have spotted, that something was up. I too have noted that I have been clearly picking subjects, that said little about the now, this very minute. It’s not that I am trying to deny that it’s happening, it’s just I know how tiresome it gets when someone goes on and on, about the same single thing, especially when it doesn’t really change. That’s what makes it such a battle, it doesn’t matter what I do, I am in constant pain from my stomach. See, I told you, it boring. So I’m not going to go on about it today either, it’s more an update, a note to say that it’s now three weeks, since I last had a straight six hours, without the level of pain, that makes me reach out for the Morphine. Nor, have I had a single day, where sleep hasn’t been on my mind, far more than I remember before, two things that I am now convinced are locked together. Tomorrow is the start of week four, I just hope that if I need to make an update, it will be to say, that at last, it’s settling down again.

I’m starting to truly hate that word “chronic”. It seems to have snuck its way into every corner of my life, almost everything seems to be “chronic”. The only good thing, the things that 14 years ago at diagnosis, were then counted as “chronic”, mainly don’t bother me at all now. I’m not saying they are gone, they just don’t bother me. That’s why I say that it’s a sneaky word. What it does, is attach itself to something, then it starts looking for the next step above. It’s not even bothered if it’s the same symptom or something totally different, it see’s it, and it want’s it and just like most petulant children, what it want’s, it normally gets. Each step it takes, well it forgets about the one before, because it’s got a new toy, that’s bigger, brighter and more painful or annoying than the last. I’m never been sure which is worse, pain or annoying. In some ways, I’d actually say annoying is wins that match. Painful, well it can be treated with meds, relaxation and sleep. Annoying, just eats away at you, hour, after hour, after annoying hour. Right now, on the annoying scale, the winner has to be my legs. They died a couple of weeks ago now. Well, I think it’s a couple of weeks, that’s the problem with annoying, they appear and become part of our lives. Days, weeks, or even months pass without count, they just are, before you know it, it becomes part of your life. As I said, I am sure that those things that were “chronic” 14 years ago are still there. It’s just, that they are so much part of me, that I no longer know they are there, or that they are wrong.

We have all heard the classic story of the person who on visiting their doctors, forget to mention, this or that. Well, that isn’t just bad memory. It’s because what some might see as wrong and needing to be fixed, are just so much part of us, that when the doctor asks “How have things been?”, we say “Fine”. It’s not habit or forgetfulness, it’s because this horror story called our lives, is “fine” and “normal”, to us, it is us. If forced, I don’t think there is a single inch of my body, that I couldn’t find something bad to say about, but to me, it “normal”. We aren’t as dotty and as daft, as some think us, we just have a totally different way now of measuring our world. Think about it, how many seconds after putting on your make up, or a hat does it take for you to forget that it’s even there? Well, it’s the same thing, just on a bigger more permanent scale. I have heard so many people tell me that they will never get used to this or that, ask them even just a few days later and there is this moments where you can see in their eyes, that they are having to think. They have become used to it, it has seamlessly slotted itself into their lives.
Not being able to feel anything other than numbness in the majority of my legs, is a normal everyday thing. “Annoying”, but “normal”. Most of the time, unless I am drawn to it for some reason, like it being so intense that it if feels like it has frozen its way right through to my bone, I almost forget about it. It hasn’t gone anywhere, it’s just in a quieter spell, or I am deeply distracted enough for it not to dominate.

It has been such a long time now since I felt what most would call “normal” that I honestly, don’t think I can even remember it. I don’t actually think, I can even imagine it any longer. My body, is just my body, and the things that it does to drive me up the wall, are not exactly expected, as I honestly don’t know what it will do next, but I do know it will do something. Every movement I make has some sort of price attached. Messages from my nervous system are so screwed up and so sensitive, that anything, even just a single breath, isn’t just about air, it is about, what every nerve involved, thinks it feels. A breath doesn’t start and end with the pain from my diaphragm, or intercostal muscles. There are thousands of nerves in that process, from the ones the air travels over in my nose, throat and trachea, to those on my skin that should, just feel material on skin, but often finds sandpaper, fire, ice, and numbness right next door to each other or at the same time. My nerves have been turned up to 11 for so long, that I couldn’t even tell you what 10 feels like, all I know is I often wish I could feel nothing, oddly, though, that something I equally fear.

I doubt in reality that there is anything that my body can do, that it hasn’t already done. Those things I often say are new, aren’t really, they’re just a variation on the theme, but that what “chronic” health is, a variation on good health. Admittedly, it’s a rather unpleasant variation, but it’s one you get used to, no matter how unpleasant it gets. We all learn to live with whatever life throws at us, which is very different from liking it, but we live with it, what other choice do we have. In many ways, I suppose not being able to remember “normal” is a blessing and the reason that the longer we are ill, the less we bother to tell people that this or that is causing us a problem. We’re fine, because what else is there? To annoy everyone by being honest, to make ourselves depressed by dwelling on what can’t be changed? I don’t remember taking the decision that I was “fine”, but I do remember that I decided that I had to accept this odd life as “my normal”, as otherwise, I was simply going to make my health worse. I doubt if there had been a film of my life made as it happened and if you sat and viewed it, that many would reach this point in my life and find anything “normal” about any of it. To stay sain, I had to see it as “my normal”, so it only makes sense that I see my health in just the same way.

Please read my blog from 2 years ago today – 12/12/2013 – Awareness

The last few afternoons I have been dealing with a common problem with a twist, “Google madness!”. You know when you set out to do something incredibly easy on-line to only find out it is a total nightmare! It isn’t what…..

Thinking differently

Posted on September 1, 2015 by livinginalimitedword

Cooking, that was my afternoon yesterday. I spent a whole four hours making Psyllium pancakes. Well, to be fair it did spend two hours doing nothing other than sitting quietly growing and growing. I just wish the yeast did something other than just make it easier to cook, looking at the finished article and they are as flat as a pancake ever was, no depth or lightness at all. On the upside the pain if I stick to my normal diet and don’t eat too much, has been dramatically changed, not gone, just changed. I still get pain daily, it has never gone away, but it is mainly at a reduced level. I can only guess at this, but I think the slimy film it supplies, make things move more easily, so the dead nerves that are all over the place, are no longer totally preventing the contents from moving as they did before. The few good nerves that are still working can actually do the job they should, they just needed this small amount of help. It is though still the pain second highest on my wish list of pains I want rid of. I have been for the last three weeks eating just one pancake per day without having to try and disguise it with something else, since I started not adding flour to the mix. I don’t understand how that changed the taste, but suddenly Psyllium has become edible. As I said yesterday, life really isn’t allowed to be easy and there is a price to pay for everything.Those four hours snatched from my day, even though I spent one hour asleep as it slowly rose and the rest was spent sitting on my perching stool, had left me totally shattered. Even this morning, I am still feeling the effects as my body is aching from the unavoidable exercise that it just isn’t used to. It also shows up another one of those things no one tells you when you are diagnosed with a chronic illness, all solutions to your health don’t come in convenient tablet form.

I don’ know why, but once I really knew what was wrong with me and what it was going to do, I had this image of an eventual future of living off medication. I saw my future spent sat next to a growing table full of tablet containers. That my life was simply going to end with me connected to a dip that fed my cocktail of drugs into me as I couldn’t swallow them, but everything I saw was drugs and more drugs. I suppose part of that comes down to that myth that doctors can cure everything, and what they can’t they can treat. Being a post world war two baby, also meant that I grow up in an age where it didn’t seem possible that this brave new world of technology and high tech medicines could possibly be turning itself backwards to the world of herbal and potions. I somehow totally missed the beginning of the journey backwards and when I was aware of it, I didn’t believe in it at all. Science was always going to have a better answer than anything that grew in a field. This thing called Psyllium was even when the consultant spoke about in glowing colours and was promising me was the cure, sounded like hocus pocus. I am going to be honest here, and say that if anyone other than that consultant had told me about this stuff, I wouldn’t have believed them. Yet, there was a surgeon telling me to eat some herbal gunk and to throw out all the meds my doctor had given me to help my bowels work. If I hadn’t believed him, I wouldn’t have spent three months experimenting on finding a way of making the 200% totally inedible, edible.

So OK I don’t go to the loo every day, but I am going to the loo, which is a huge relief and result. I used to go once a fortnight and went through more pain that I thought possible. Now it is once a week and occasionally a couple of times in the same week. I still go through huge amounts of pain two or three days a week, especially in the hours leading up to my making a visit to the loo. Worse still to that is it quite often wrecks the last 4 hours of sleep, leaving me awake in bed, unable to sleep and not at the point where I can go to the loo. To many, that just wouldn’t be acceptable, but when you know that life without Psyllium found me spending hours in pain so bad that I broke into sweats and had my finger hovering over the nine button on my phone at least twice a week. This is an amazing turnaround. Going forward, if a consultant tells me to try any herbal solution, I will and I will do it with far more hope and belief than I did when I first realised that this man of science was seriously telling me the answer was in a plant.

The consultant apologized that he didn’t have the answer to the pain, he didn’t lie to me, he said that was for me to find the solution. He made suggestions, from things his patients had said worked for them, but he couldn’t truly give me any hope. Oddly, when you live with pain, you sort of learning to accept that pain is part of your life and there is no answer. Morphine has been a total godsend to me, but no matter how bad the pain, that breaks through my daily doses, I still have a reluctance to taking more. Especially for pain from my stomach. As yet, I haven’t learned to tell the difference between sudden painful short bouts and their big brothers who last hour after hour. I find myself sitting here all to often, saying over and over to myself, it will pass soon, just wait a little longer. Mind you I do that where ever the pain is coming from, another ten minutes and it will be over, just wait. The ones that usually works the best, are the ones that are muttered over and over until I go to sleep. I don’t know how I would cope without that escape into sleep, I know I am so lucky that my body has at least taken this root out of life. Without it, I doubt that I would still be here and if I were, I would have lost every strain of sanity that exists.

So now I am on the countdown to seeing my next consultant, this one for my COPD and all it is managing to do to me. Adam and sat the other evening and were talking about something that brought up the topic of my exacerbation that triggered this appointment. For the first time in a long time, I heard and saw anger in Adam over my treatment. Clearly what happened back in June has been playing on his mind. He came out suddenly with a declaration that if I was ever that ill again, he wasn’t going to give a damn what the doctor said, if he didn’t come out to actually see me, something that didn’t happen once, he will be calling an ambulance. Even when I was ill, I wasn’t happy about not being seen, as I like Adam was sure that I needed oxygen, not just antibiotics and steroids both prescribed separately and both over the phone. I had had pneumonia before and I wasn’t as ill then as I was this time, then I was rushed into hospital and spent three days with a drip for the drugs and an oxygen mask permanently attached.

I really don’t seem to be able to win recently with the combination of my illnesses. I have noticed a pattern with the pain in my chest that makes me without even knowing I am doing it go into shallow breathings. If my stomach is painful, it clearly kicks off pain in my chest, but if I am run down with my MS, as in fatigued, it also seems to make breathing more difficult and I slowly slip into shallow breaths. During the day, I catch it, I have learned that I can actually make the upper part of my chest expand a little further without causing more pain in my diaphragm, but at night, I have no control. Adam is now picking up when I have woken with that headache and buzzing in my head, but he is now also picking up on the more subtle effects. More and more he is that bit reluctant to leave me and is home at lunchtime to be sure I am OK. Yesterday was a good example of both and one of a handful of recent occasions that he has admitted that he wasn’t happy with my appearance in the morning. At least we have less than two weeks to wait for the answers as to what the consultant will think and do. I don’t know why, but I half expect it will just be in this case, more drugs.

Please read my blog from 2 years ago – 01/09/2013 – The right thing

As yesterday passed I didn’t just get tireder, I started to totally crash. I had had a nap in the morning, something I don’t normally do, but I still equally need to sleep in the afternoon and I did, for 3hrs once more. I have to say that I did wake up feeling a lot more refreshed than……