Getting it right

I lost my right leg last night, we were just watching TV, and the whole thing suddenly died from knee to toes. Compared to last week when I wasn’t able to find a single of part of me that felt normal, I’m not complaining. What made me mention it, was the fact it was to totally numbĀ and went suddenly. I’m used to it normally going slowly from a single expanding spot, but last night, it was fine one second, the next it was gone. I guess it could say it has learnt a new trick, in time for the New Year. In general, getting that deep nights sleep did make a huge difference and it is a trick that I am going to hold onto, just in case, it’s needed again. I wasn’t doing it totally in the blind, as the day before I had taken a booster during the day and I noted then, that the sensations eased off, they didn’t stop, but they did turn down in intensity. I am wondering if part of the problem, is that my painkillers aren’t holding everything as quiet, as they have up to date. It has been quite a while since they were last increased and I know better than most, if you are constantly fighting, even with low-level pain, you get tired. It doesn’t just wear you down during the day, but it also means that you don’t sleep as deeply, which isn’t something you can’t really measure, other than by how you feel during the day. Get tired, which I have been now for ages, and everything else steps up, making life miserable. It might well be time to ask for a 10mg increase on the slow release Morphine, as the last time I increased it by that amount, life changed totally for me.

I don’t know if you would call it a healthy respect, or just a plain reluctance, but I never race into increasing or changing my medications in any way. I know that some people just take and take, with only one thought, to try and make their bodies feet just as it did before their condition began. That to me is not the best route. If I had been doing that since I was diagnosed, god knows how many drugs, I would be taking now. I, without discussing it with anyone, have cut out and ditched about half the drugs that all my different Doctors have prescribed for me, at different times. Every drug I have ever been given, I have tested, not just when I first started them, but at odd occasions from then on. If I didn’t feel it was doing what I expected, I would stop it for a while and wait and see exactly what happened. This is not something, I recommend that anyone does, I have chosen carefully the drugs I have removed, none has been life essential, nor condition altering, just symptom suppressing. I noticed, that every time I complained to my doctor that I wasn’t getting my expected result from taking them, all they did was up the dose. The first one that I stopped was one that was supposed to keep me awake. After about three years of taking them, I suddenly foundĀ that I could take it, and go to sleep within the hour. I simply wasn’t happy about adding yet more, of what in effect was “speed” into my system I stopped it and absolutely nothing changed. I didn’t feel different in any way, so I could see no point, in taking their ever increasing dose, when the one I was on, far higher than the insert suggested, did nothing. It has prompted me to test others as well over the years. At a guess, I would say that I have halved the medications they would have otherwise continued to prescribe, they weren’t doing me any good and were just costing the NHS money.

I know that my body is a mess, and I can’t see how, it helps to fill me with chemicals that do nothing or little. The drugs I am on now, are drugs that I need and work, but I still have a reluctance to increase anything, before I reach the point, when there is no other answer. Chemicals can help, but there is no way, that there isn’t a price to pay at some point. Right now, my body is tolerating them, appreciating them and working with them, which is just how, it should be. I know that on the scale of things, the level of Morphine that I am on isn’t that high, but, I don’t know how many years I still have to go, or how or what my body will throw at me. Addiction doesn’t come into it the equation at all. Why would it? I’m in the closing phases of my life, if I get addicted to anything, well it’s not going to matter, as there’s only one way that I will ever come off it. All the medical profession can do for me, is to keep my pain levels at bay. I know they can’t take it away, and that I will never, not even for a minute, be totally free of it. As long as it’s at a level where I can live with it, then that’s all I ask.

Chronic illness is all about balance. Activity, enjoyment, drugs, sleep and hope. You have to have them all, and you have to decide for yourself, how you want that balance to sit. It’s personal, not medical, and that’s something a lot of people forget. Our doctors are there to help us, look after our bodies, not to control them. It doesn’t matter what the medical books say, or those people who read them, think they say, it’s up to us, to interpret it all including how it all makes us feel and to control our health. Personally, as I’ve said before, I listen to my body, I know it and I know quite quickly what it likes and what it doesn’t. So far, I don’t think I have done too badly in actually living with PRMS, COPD, Fibro and a list of many other more minor conditions. This is the start of year 15 post diagnosis of my PRMS, 15 years ago, I didn’t think, because of what my doctors said, that I would be here today, yet here I am. This the start of year 3 post diagnosis of my COPD, 7 more to go, if the doctor is right, but I still think, that it’s all up to me. I’ll keep listening to all and anything that might help me, but it’s all up to me.


Please read my blog from 2 year ago today – 02/01/2014 – Glorious isolation

In Scotland today is yet another holiday but the last now until April but it means that again my morning has been filled with the constant sound of snoring, no matter how much I love Adam I will never get used…..

We can live with it

There is something wrong with my right hand and arm this morning. My thumb and index finger, right up to my wrist and slightly less so, right up to my shoulder following that line, feels as though they have been anesthetized. When I first woke this morning I could hardly make a fist, but that quite quickly passed and normal mobility returned, but it left this numb and tingling feeling behind it. Very much like your face feels after a bad visit to the dentist. The fact that it is working perfectly normally now is good, but after losing my left hand completely 10 years ago, I have lived in fear of this. It took about three months before I was able to do anything of any importance with it and nearly a year to return to normal. The whole idea of it happening again has been my greatest fear, especially to my right hand. When the left hand went, I had about three weeks of odd things similar to this happening. Feeling, sensations, strength and mobility came and went until the morning I woke to find there was nothing there at all. I couldn’t even hold it out in front of me and my hand just hung limply at the end of my partially outstretched arm. That whole memory has hung around me like a spectator waiting to pounce again. Well, at least in my head it has. This is the closest I have come to it and I have to admit that I am finding it somewhat worrying. There is nothing thought that I can do but wait and see what happens.

Oddly it was just last night that I got around to telling Adam about something odd I had noticed in the last few weeks with both of my hands. At first it was just when I went to bed and was lying there motionless and silent. There was a deep ache in both hands, in exactly the same place, from the tip of my middle and index finger right up to my wrists. It had slowly been growing, not as far as pain, just this ache that appeared only when I wasn’t moving my hands. I found it at first rather fascinating, there was no reason that I could find for it and the fact it was identical in both, just made it even more attention-grabbing when it appeared. It doesn’t matter how I examine what I do throughout the day, I can find nothing that could be causing it. Yes, I could cause the same ache in my right hand by lifting a full glass of coke, but there was nothing that triggered it in my left. This isn’t the first time I have been struck by aches and pains that are mimicked perfectly by the other side of me, but why it happens, I wish I knew.

At the close of yesterday’s post, I touched on the subject of the way that I deal with pain and sensations that become clear are going to be part of my life forever. I can’t remember when I started doing it, but I know that I have been doing it for many many years now. There is a point where I have to take a decision not to focus on or be governed by any pain or change that won’t or can’t be fixed. If I didn’t, I would have driven myself mad many years ago, rather than coping with my life as it is. When I came back from seeing the consultant and had the news that there was as I already knew nothing they can do about dead nerves and any operation they could do, would probably leave me in a worse mess rather than helping me. I was so glad that that I wasn’t facing having a stoma and that they had given me several things to try which might help ease some of it, I was delighted. Delighted but not stupid enough to believe that that was the end of it. I knew the pain wasn’t just going to vanish as he did, as he said quite pointedly that finding an answer to that, was down to me. As he said, I either had to learn to live with it, or I had to pursue some way of removing it such as alternative medicine, or more of the conventional medications I am already on. I have gone for a combination of two of them.

To those who are already long-term sick, I am sure you have worked this out for yourself, but I wish someone had explained it to me, rather than having to find it out by myself. You can’t just stop feeling pain if only we could, but you can work with it and you can put it in its place. There isn’t a single person alive who hasn’t had a pain that has seemed to just vanish, when, in fact, all that has really happened is you were busy and stopped thinking about it. Simply by shifting our focus, like giving a child a sweet or an ice cream, the pain moves into the background, not healed, just put in its place. Part of what I do is based around that theory. I work hard on not focusing on it. When it is severe and I have to deal with it, I just get on with it, as there is nothing anyone can do about those peaks. The rest can be pushed backwards and can be forced into just being part of the background of pain I live with all the time. I use distraction all the time. It is built into everything that I do and is why I used to never stop doing things. When I was mobile that was easy, there was always work or housework that needed to be done, or something I could do from my long list of hobbies. I never just sat there moping about my pain. It’s harder now, but as you know I stay as busy as I can. I doubt anyone can find a point in my day where I am not keeping my brain busy if not my body and it works.

It isn’t really a surprise that I along with everyone else has the most issues with pain in the evening. We have stopped, we are doing nothing but sitting in front of the TV and that pain always makes itself known. It just gets worse when we go to our beds, as the TV’s minor distraction ability is gone. What I do though isn’t just about distraction, it’s about losing the focus on any individual pain and turning them into a mass, not a point. When I was writing all the time about the spasms in my diaphragm and the constant ongoing pain in my intestine, I was over focusing on that pain and its cause, I felt it all the time and it didn’t matter how busy I was, I was still thinking about it. My week in bed due to my chest was actually a blessing, as it broke my focus and started the process for me. Without it, I would have had to be hard on myself, forced myself every time I caught myself once more thinking about, or feeling it alone above all other pain, to think about something else that had nothing at all to do with pain in any way what so ever. If you like, forcing myself to ignore it. I have even gone as far as doing those psychobabble things like visualising it and pushing it away from me. It may sound silly, but if you don’t tell anyone what you are doing, no one needs to know you have just joined the loony brigade. For those sudden high spikes in pain, I have on occasion resorted to using breathing techniques I was taught for use during labour and they work too. Probably not the best thing when you’re out shopping, but they work.

So OK, none of it is rocket science and it doesn’t stop me feeling that high-level pain, that is what my 10mg Morphine tablets are for, but the rest, the rest is livable. I like millions of others, will never be without pain. The biggest thing to changing it and to living with it is our attitude and our focus on it. If you let it rule your life, it will do exactly that. If you work on making it just another part of your life, along with taking the medication that your doctor prescribes, you can live with it.

Please read my blog from 2 years ago – 19/07/2013 – Time in nothing

I guess I am heading into a weekend where I will be in my bed rather a lot. The temperature here is rising by the second and it’s only 9:45, for me the forecast looks gloomy, blinds shut, windows open and lying on my bed wishing that it would just end. This morning I swallowed the….

It doesn’t work that way

I slept like the dead last night, it was one of those nights where someone switched of life for me and restarted it in what felt like seconds. Nights like that have been so rare lately that I felt it needed a full mention, just so I don’t forget that they do exist. Waking up in pain several times each night has been my normality for the first half of this year, solid sleep was becoming a distance memory. The pain and the discomfort are still there, but after going to the loo now three times in just a few days, I actually do feel a difference in the pressure sensation. It’s no longer like being 9 months pregnant and about to explode, maybe back to about 7 months, that point when in your first pregnancy when the fact that you are going to get even bigger, seems like some kind of sick joke. Unfortunately, everything feels to be at a stand still again, but I suppose the idea that it could continue as a daily event so soon is possibly still a dream just now. I did make an attempt yesterday to take the Psyllium in a vanilla milkshake, but it just didn’t work, so I will be sticking to my bread and pancakes for now. I am very aware though that I will need to come up with a few more recipes as time goes on.

I managed to hurt myself a couple of nights ago, it’s one of those silly little things that because it is so silly and it is so little, that it just drives you mad. All my life I have had the bad habit of breathing through my mouth when I am asleep, Adam insists that it is just as annoying as snoring as according to him, on a bad night I sound like Darth Vader. I always try to breath through my nose as I drift off in a vain hope that I might just continue to once I am asleep. The same thing always happens, slowly my mouth opens. I am sure I must have done this in the past, but it seems to happen to me at least once a week recently, just as I am dropping off, my jaw snaps shut. I don’t need anyone to tell me that it is a sudden nerve message, but there is a painful danger in it and one that occasionally happens, my jaw snaps shut on the edge of my tongue. Just like biting your tongue, it hurts like hell. Trying to go to sleep with your tongue sitting inside my tooth line is just as unsuccessful as try to keep my mouth shut. Concentrating that much alone is enough to stop me from sleeping, it really is a loose, loose situation. Catching it once is bad enough, but when I do it again in the next couple of days then my tongue unilaterally takes precautions and swells up. It’s not the brightest protection as it means I then do bite it during the day and if my jaw snaps that night, well the result is obvious.

There is one really odd thing that I have noticed over the years, it doesn’t matter how much pain your body can produce, do something small and silly, even as small as a paper cut and you know about it. I don’t know why, other than it feels logical, but if you live with high pain levels and your body is full of painkillers, surely you shouldn’t feel those silly little things or at the worst just notice them slightly. Trust me, that point of logic just doesn’t work. I have almost driven myself mad over the years trying to work that one out and the closest I can get is that our bodies are far more intelligent that we realise. This is purely a guess, but one that to me make sense. Pain is there primarily as a way of our body saying something is wrong and you have to do something about it. Shock pain, like the second that I bite my tongue, is a different pain, it is a pain that is on the emergency level and because it is sent out on a different system if you like. Shock pain is exactly that, an instant pain that warns us not to do something, even if it’s not our fault and our body did it to us. Because it is on a separate messaging system the blunting by painkillers is just that blunting, not relief, self-preservation says we have to be aware and our bodies hold that as the primary rule. I know from experience that I should be feeling pain right now from a swollen tongue, I’m not, the pain relief is working as it’s a different type of message. If I were to bite it again, which I’m not intending to, but I know that without a doubt for a few seconds, I would know.

Regular readers will have worked out that I am a love of medical programs, be it a soap, a drama or a documentary. What I have always loved is in the soaps and dramas, you will very often see someone being cut out of a car crash with limbs hanging off, being given lower levels of pain relief than I live on daily, but let them wince once and they are immediately given another 5 ml of Morphine, but it is exactly the same dose if they are screaming in pain. Despite all these programmes having medical advisors, there prescribing of pain relief seems to be somewhat odd. Watch a documentary and pain relief is held back as though it is coming directly out of the pocket of the person who is giving it. Unfortunately, that is more often or not the real picture.

My pain levels rose and rose over the years and I worked my way through several different medications before finding one that seems to be still working, although I know I am hitting the point where it needs increasing. I have though decided to wait until I see if anything changes after my six-week test of Psyllium. One of the things that I have learned is to not be scared or put off by what you see or hear from the media. I can still remember the day that I started on Oxycontin, I had this total fear of the stuff thanks to the way it has been demonised. I don’t know what I expected, possibly to be out of it, confused and drugged up in a way that I hate as much as I hate being drunk. Nothing happened, other than my pain reduced, but the doctors reluctance to increase the dose as it slowly stopped working was ridiculous. Then it stopped working almost totally, for some reason my body wasn’t breaking it down. So they changed it and I found myself on straight Morphine Sulfate. The same brick wall appeared again as my pain rose until I saw a consultant who told my doctor I needed more and I was to have it.

It doesn’t matter what you read, what your doctor thinks or what works for others, it is your body and if you are in pain, make sure you push until they get it right for you. Don’t expect miracles or to be totally pain-free, our bodies don’t work that way. But there is a drug out there for everyone and no one should have to spend days in pain, far less their entire lives.

Read my blog from 2 years ago today – 10/06/13 – Is it possible to understand pain?

I am so glad to say that it has clouded over and the temperature although high when I first got up seems to actually be a lot cooler, such a small thing but what a difference from this time last week. To those that don’t have MS I know it is hard to understand how anyone could wish for the sun to……

Time to think again

I was just sitting here eating my breakfast before I started on my blog and sort of found myself watching the TV. Well, it’s there and on, what else can you do while you eat if you don’t want your breakfast inside your keyboard. As I watched I decided to start channel flicking, looking for something to have in the background while I was writing, I hate silence. Oddly I find it makes writing harder, I think it’s because the silence when I’m not hitting the keys is deadening and make each second of thought harder. It was one of those odd things that I wasn’t really conscious of make a choice to stop channel hopping, but there I was watching some program about UFO’s. I realised that yet again I was watching and laughing at myself for the fact I was watching. I do believe life is out there somewhere, maybe or maybe not buzzing our planet, but out there somewhere. Yet I was watching, once again listening to the accounts of people who clearly believe what they saw and I’m not saying they didn’t, see it, but it started me wondering. Why is it that people get TV programs made about their experiences with things that many don’t believe in at all, yet no one ever seems to want to listen to or believe someone who is ill, but can’t get a diagnosis. clearly my mind was split between what I was watching and the fact I was about to start writing, but I guess it’s just another example of how warped this planet really is. Thirty years ago, well I can forgive them for that, medical science has come a long way, so to have it still happening, isn’t really acceptable. It is one of the constant things that I hear on Twitter over and over again, people having to fight to get a diagnosis while they continue to suffer without any help what so ever.

In some ways, it doesn’t really get that much better once you do have a diagnosis. Yes, you have what in many ways is the most important thing, a name to explain what is happening and that is a hugely important thing. That alone is a life changing thing, something that in many ways doctors won’t understand until it happens to them. Once you have that name, if you are very lucky, they can then cure it. If they can’t do that well for some there will be a course of medication that will ease you symptoms and make life bearable. Then you have the ones like me, no cure, no medication to make life normal, just firefighting and pain relief. PRMS doesn’t respond to any of the MS treatments, we are the uncurable and the un-help able. All they can really do is observe and throw steroids at us in mountain high heaps when things go wildly wrong. Until the last few years, that for me was fine, I could cope with reasonable ease what was happening and as long as my pain meds were working well enough, well life was good. As things have been getting worse and worse at a clearly accelerated manner has forced me to start thinking about my future. I guess I haven’t really put that much thought into to it as well like everyone else I don’t really want to know what is ahead of me. I have realised though that I can’t be an ostrich forever, I have to face what lies ahead and I have to start making decisions about how I want my treatment to go. I know I have written before about setting up a DNR or as it is called in Scotland a DNACPR, (Do Not Attempt Cardiopulmonary Resuscitation), but that is for the very end of life, there is a huge gap between now and then.

To date, I have been very clear that I prefer to have a clear mind than to be totally pain-free if they can’t be achieved together. I have to say here that I have been extremely pleased to find that Morphine didn’t have the effects that I was expecting. Recently I know that when I use the booster pills like sweeties then I get vivid dreams, out of personal preference, I have chosen to take more pain and not be totally confused when I wake up. The increased pain that I have been living with has side effects of it’s own, it drains my energy faster than anything else I know. The worse the pain, the more sleep I am needing and that’s cutting into my life. If the pain is really bad, that also cuts into my sleep and the whole thing is taking my routine and tearing it into shreds. My PRMS clearly now has total control over my bowels, it can’t be fixed any more than anything else can be, it’s about managing them and we are working on that. So far with little success, other than I have to say the past three days I haven’t had as much of those terrible intense pains that make me want to cry. I can’t work out why, as I still haven’t been to the loo since I took the laxative eight days ago. I can see now quite clearly that my future isn’t going to work out the way I thought it might. I can see that being bedbound is going to start in phases, not out of the lack of ability to not get up, but because I will be exhausted all the time.

In a funny way, I can feel my body shutting down. Not in a way that I feel I am dying, so don’t worry about that one Adam. What I mean is it is all slowing down, everything is drawing me slowly into doing less and less as in the number of hours of activity. I feel the need to move less if that makes sense. I managed the baking yesterday, but when I was finished, well I felt good mentally, but physically, I had this dead feeling. As though my limbs weren’t there, they had given all they had got. Something I know I mentioned a while ago is happening more and more as well. When I am lying in bed, I lose the location of my limbs, I can’t tell for sure if my legs are crossed or not, or if my hands are flat on the bed or up on their edges. I don’t know where they are, as I can’t feel them. As I said when I wrote about it, it had started to happen when I was up and about, now it’s happening all the time. Right now if I stop typing, my arms will immediately start to vanish and if I stay still they will like when in bed vanish totally. All those nerve signals that fly back and forward, don’t flow at all unless in use. Shut my eyes and my whole body starts shutting down, as though I am going to sleep, not dying. I am drawn more and more to lying in bed for comfort as that dead feeling belongs there, not here at my PC. If I go to bed, well I sleep with no difference than if I had lain down exhausted, my body happily shuts down.

I know I will just have to wait and see, but I am now saying without my arm twisted up behind my back by my illness, that I am willing to take more pain control if needed. I have had enough of fighting against the pain as it achieves nothing any longer. I was scared it would shut my body down and all I would want to do is sleep, that is happening anyway, so why fight it any longer. Fighting to not take the drugs has run its course, my PRMS has taken away the reason to fight it. My routine that has kept things level for a long time is no longer working the way it once did. I need to look at it all again and I need to start thinking in more detail about what the future really will be and how I am going to handle it. The last time I did all this was 8 years ago when I became housebound. Yes, it had a major overhaul when I was made redundant 3 years later, but the core has remained the same. It has been tweaked over and over, cut back and trimmed, but my health has taken now taken over.

Read my blog from 2 years ago today – 3/06/13 – The nurture of illness

I seem to be running increasingly behind time today, it’s 10:30 and this is me just starting to write. I have no idea where this morning has gone, I haven’t done anything different or had any reason to take longer than normal, but here I am dragging myself into my main task of the day. That sounds really bad as though this is a tough task I don’t want to do, nothing could be further from the truth. I am guessing that I am already…..

The point of understanding

Yesterday was hellish, not all of it, well not until just about 11am. I had woken feeling as fine as I ever do, I wasn’t in anymore pain than normal, nor did I feel ill, everything was just average. So the day started as any other day and I worked my way through all the things I normally do, then it just not long after I had chased Adam out of bed the pain began, my stomach was in pain not just in the normal places but as many places as it could find to possible make ache. There are a million miles of the difference between the pain I normally live within my guts and the typical what I would call a stomach ache and that was what I had a good old fashioned stomach ache. It kind of shocked me as I actually can’t remember when I last felt anything like it, but there it was and I recognised it like some distant cousin to my recent life, I knew it, but I hadn’t met it for years. Every time I moved around or twisted, it shouted back it’s presence and over the first hour, it woke up the nastier side of spasms and intense pain and refused to shut up regardless what I did. It was the combination of the two that made yesterday a place I wasn’t happy to be at all. Oddly it also answered a question I was asking yesterday, as the pain rose, my interest in doing anything slowly but surely disappeared, all I wanted was to just do nothing. Not only did my desire to be creative vanish, but my desire to do anything at all, disappeared along with it, leaving behind it the numbness I normally feel towards anything outside my routine. I know I wanted an answer to how I had changed so much so quickly, but to be honest I would rather have been left wondering.

The last few days I was on a high, no need to guess why that was, my pain levels were average or slightly below and life had a zing to it that has been missing for a long time. I can only assume that all those good happy chemicals that good news pumps around your body ran out at around 11am yesterday. The stomach ache, that I still have this morning, I am reasonably sure is down to the Psyllium starting to work on me and actually producing what I would call a more normal reaction in my guts than I have felt in a long time, although nothing has actually happened yet, but I’m taking that ache as a good sign. The bad side is, of course, that pain has a horrid habit of breeding pain and the spasms that cause them. Within just a couple of hours yesterday, I went from feeling really good to wanting to crawl into my bed and disappear into sleep, which is exactly what I did.

The last five months of living in pain all the time and never getting down to a level where I could ignore it, has left me with such a dulled view of life that I had forgotten what it was like to be on a high. I had forgotten how things used to be, a mix of good and bad, what I was calling a good day, was worse than I feel right now, yet after that window of good, today feels terrible, but I still know it isn’t. I knew that I had made a million adjustments in the past 14 years, but it appears that just as you forget how childbirth feels, you also forget how it feels to just be alive and as normal as everyone else out there living their lives today. It is almost like you are walking upstairs against an elevator that is going downwards, at times you can feel as though you are holding yourself steady on the same step level, but the reality is you are dropping down just that tiny little bit each day. You don’t feel the downwards slip, so every day feels like the one before, only an outsider observer could actually see you gradual slipping below where you started, but you feel nothing different at all. I suppose if we did we would all start to panic, start to fear what was happening to us, it so subtle that unless something brings our attention to it, like an incredibly vivid memory or a reminder from somebody else, we just keep climbing at what we see as a totally steady state. In the last five months, I didn’t need that outsider, I could feel myself being completely unable to remain on that same step level, I was slipping lower and lower on the stairs and feeling every single dip and yes I was beginning to panic.

When I crashed yesterday, it reminded me of how I used to be when I was still working, one minute fine, the next screaming inside to go home and leave it all behind. When you don’t do anything, don’t have those things that test us all in normal daily life, you loose those wildly dramatic crashes, yes I do still get suddenly tired, but not in the way I used to, it used to be like someone flicking a switch, one second fine, the next flat and out. I came home from the hospital mentally skipping, not physically, that might have been asking too much, but mentally I was on a high. Even my tired body couldn’t fight against it, my mind wasn’t going to let anything else win. It’s amazing just how your mind can override everything else, physically I was tired, physically I had to sleep for three hours that afternoon, but my mind stopped the fatigue from hitting in it’s normal way following an outing, that override has ended. Today, I am tired, I am in pain and on top of that I have a stomach ache, but I am no longer scared, that one small high is still there as if nothing else totally useful came out of Tuesday, I left my fear behind me. A week ago if I had had this much pain and with this stomach ache on top, well I would have been waiting for the point I needed to call an ambulance, today, I am just working my way through it as I used to do before the whole thing went mad. That is another thing that is on those steps with us, not just our general health and physical abilities, but our ability to manage pain. Oddly though it seems to work in a totally different way, as your ability to manage pain grows at an equal rate to the one you are going downwards. A year ago I would have been waiting for my insides to explode if I had been in this much discomfort and pain, today I can not just handle it, I can also continue with my day.

I added in the peppermint oil yesterday, almost as soon as it arrived just after midday I took the first gel capsule. They are supposed to be able to pass deeper into your intestine before actually disintegrating, getting the oil into your intestine rather than your stomach. I was, therefore, a little surprised when I woke from my nap at 4pm to find that when I burped, I could taste the mint. I had my normal mug of soup about an hour later and was even more surprised to find at around 7pm I could still taste the mint, despite not having actually taken anymore. I didn’t take a second one as I wanted to see how long I could still taste it and be sure it wasn’t going to cause any new problems, but mainly it was simply out of interest. Somehow I don’t think I should have been tasting it 7 hours later, but mind you garlic can do something very similar. As of today, peppermint oil is now to be taken three times a day and is sitting in my pill stash in the living room, along with my booster pills and anti sickness pill, as I really don’t want to have to make an extra trip to the kitchen just to take them. I did try a Psyllium milkshake yesterday, but it didn’t work, coconut is not strong enough a flavour to cover it. I am going to try chocolate when I do my next shop, I think if I buy Coco powder and make up a base mix of strong Coco, which has to be mixed originally with warm milk to make it break down into a paste, once chilled in the fridge it might just do the trick. I have also come up with a few other ideas to test out and see what happens, the more I am coming up with the more sure I am that I really can bring it into my diet without a total disaster occurring.

Read my blog from 2 years ago today – 24/05/13 – Finally I admit it!

It constantly amazes me just how different we can feel in those minutes of lying in my bed heading toward sleep than throughout the day leading up to that time. So often, I find I lying there, sometimes in pain and at others just feeling unwell, not wishing for, but almost expecting that I will not wake the following day. It is a feeling……