The good in negative

I have to laugh to myself when I was setting up the final piece to my daily blog, the link to my post from two years ago. Yes, I do do that first, it might seem odd, but if I don’t I normally forget to do it at all and then have to go back at whatever point I notice it and fix it, if I notice it at all. The paragraph I read was about the problems I had with a new keyboard I have purchased, the very keyboard I am using right now and I am about to replace, but for a totally different reason. In just two years, I have managed to wear the paint of several keys, which if the words are flowing easily isn’t a problem as I touch type, but if I stop because I have to fix something or I am having a bad day, I need my keyboard to be perfect. It is bad enough to be sat here staring at my keyboard in total disbelief as I have lost a letter and can’t remember where it is when the letter is clearly there to see. But when you find yourself searching and searching to only suddenly realise it has to be on of the blank ones, but which one, is more than annoying. I even admit to the odd word that I wouldn’t type hitting the air. There is nothing worse than sitting looking at something that you know has to be there and being for no reason other than your mad brain, being totally unable to see it. Actually there is, I have this total fear that one day I am going to sit down here and find that I can no longer touch type at all. I totally love this invisible connection between my mind and fingertips, to loose it would be total hell. If I can’t see what is in front of me, what chance would I have in ever managing to type a single sentence far less an entire post? I know there are people out there who have written entire novels with just two fingers, but it would be the frustration levels that would get to me. That and the pain of losing another instinctive ability, I have lost enough of them.

Silently, typing is a skill that I now put higher than many others, it is one of those things that I hold onto for my future. I have this fear of not being able to get anything out of my brain as spoken words. I have enough problems now when I am just talking to those who know me and can fill in the blanks. The idea of being stuck unable to stutter my way past all those blanks and never finishing another sentence myself is one of my personal hells. Being able to touch type might one day be my only communication and as I already know people complete my spoken words if I can’t type quickly, well they would finish my written words too. I never thought about not being able to talk until that time I land up unable to coordinate my swallowing, breathing and talking, it shocked me how quickly I just couldn’t communicate what I wanted or needed. But more than that it started me thinking about all the things that nerves are required for and how easily we can find ourselves cut off from everything. All it takes is a flare and bang, you’re stuck in a totally different body, one that doesn’t do what it did the day before. I don’t know which is harder, having a dramatic flare that suddenly destroys you, or a long slow progression. Both have their issues and both have their good points as well, if something that is totally negative can be good.

In some ways I think a flare are my preferred option, it gives you a few days notice that something is wrong then bang it hit’s its peak. Like when I lost my left arm, I had a clear weakness in it for a couple of days, then I woke up to find it was dead and useless. It may have taken months for it to come back to the level it’s at today, still weak but working. A flare gives you a fighting chance, it may steal things in seconds, but it also lets you have part of them back, never the full function but part at least. Progression does what it says on the tin, it hits and it keeps hitting, again and again, slowly destroying whatever it’s focused on. It is by far the cruelest of the two as you know what it’s doing and that there is no way of stopping it, but because it’s so slow you keep reaching out in the hope that someone somewhere can stop it, make it change direction or beat it at its game. Every day of my progression of what ver is happening to me with my bowels and diaphragm are documented here. Every week there has been changes and every month it has grown worse. I dread what the next three years has waiting for me, what the progression will produce next and how or what it will go after next.

The total failure of the peppermint oil, one of the things that the consultant had high hopes for has kind of knocked some of the hope that he managed to instill in me. Despite taking the psyllium every day, nothing has happened yet without any other intervention, but I do still have some hope for that one. The pain has remained totally unchanged, if anything, I would say it is slightly worse as the speed it hits after my waking in the morning has clearly increased. I can’t even make it to standing up now, without the tightening beginning. Progress is still happening and still in totally the wrong direction. I know that none of the things that he spoke of is fast acting and I am only in week two of trying this stuff, but so far it is a total and dramatic fail.

Yesterday, I made it through to just midday when I had no other choice but to crawl my way to bed. I felt so sick and so dizzy and unable to do anything, that I had no option. I set my alarm for two hours, not expecting to sleep that long, but as a just in case, I’m glad I did. Adam was out last night so I took the opportunity to go to my bed early, not long after 8pm and sleep held onto me right through until this morning. It’s just gone 10am, I’m tired and in pain, progression or this trial, I can’t be sure, but what I do know is it’s taking it out of me in almost every way I can think of.

Read my blog from 2 years ago today – 31/05/13 – Differences change

I am having fun this morning with a new keyboard, I had to buy one as the space bar was either sticking or not working at all. As you can imagine there is no worse key to have such a problem with, it was totally my own fault that I had killed the old one, it was a victim of my health. Living in the same place day in day out, including eating my meals sat……

One steps forward, two steps backwards

I hoped as I wrote yesterday that the previous night had been a one-off, something that could but wouldn’t happen again, well at least not anytime soon. I didn’t have the same things last night, but it was a night of broken sleep, simply because once again I was feeling sick. Last night is the only night without large quantities of alcohol, it didn’t matter if it were at 8pm when I took my meds or at 4 am when I last woke, I was at that point where I was almost sure that any second it was actually going to happen. It isn’t that severe at the moment, but I am still feeling sick and I have honestly had enough of it. Last night I was blaming it on a mad idea that I had to try taking another of those peppermint oil capsules at around 2:30 that afternoon. By 7pm, I was sat on the settee with heartburn and yes the taste of peppermint overpowering everything. As the evening progressed I started to feel sicker and sicker when I took my meds I also took an anti sickness pill which totally failed to work at all. Come bedtime, I was even unsure how I was going to make it across the flat to the bathroom and then to bed. It was while I was lying in bed for the first spell of fingers crossed horizontal prayers that one of my theories appeared and it is a valid one. I am wondering if I am actually allergic to peppermint.

All my life, mint has been a flavour I have done my best to avoid, not an easy thing to do if you think about it. I don’t remember having any bad reaction to it in the past, just a really strong dislike of all things minty. I even hate it in toothpaste, but it’s in the majority of all reasonably priced ones, so I put up with it, after all it’s not a huge amount. It has been one of those things that has annoyed me all my life, that daily I have to put mint in my mouth and the world offered few other options. Clearly I have no choice, but it even goes as far as the fact I have never been able to stand kissing anyone who has just cleaned their teeth. Anyway, my theory is quite simple, is my strong dislike, actually my body telling me to stay away from it because I am allergic to it? Even this morning I woke with a headache and feeling sick, milder than yesterday, but it’s still there. The only other time in my life that I have taken peppermint oil it wasn’t as concentrated as these capsules and I only took it at night when pregnant to help with indigestion. I don’t remember taking it for long, but it is so long ago now that I would be surprised if I could remember anything else. Last night when I told Adam that the peppermint was causing heartburn, he suggested that I took it before eating rather than after, but after how it made me feel later, I’m thinking more along the line of not taking it at all.

Just a few years ago if you said to someone that you were listening to your body and doing what it told you, most people would have burst out laughing at you and put you on to their list of nutters they have met. These days, it seems to be the first thing that people tell you to do once you are ill. I have lost count how many people have actually told me to listen to my body as it knows best, even people in the medical profession. What I never thought would happen, is that sometimes your body is screaming so many things at the same time, that you still don’t know what to do for the best. It is over a week now since I last got through a full day without feeling sick, from mild to yes actually throwing up. I am now at a loss again as to what is causing what and what I should do about it. It is tempting to put it all down to the Psyllium and peppermint oil, but something is stopping me from doing so. What’s stopping me is simple, how I feel just now, could equally just be and acceleration of how I was feeling before I started on them. I have no doubt about the peppermint causing the heartburn, but the nausea and the desire to just go to bed, are all too familiar. Throw in the pain and fatigue, and I am in rather a sorry state if I am being honest and I don’t have the slightest idea what to do about it.

Technically, I have been ill for 33 years, but not one of those years do I see as being ill. They were my normality, they were just the way things were and I lived through them. So to say now that I am ill, to most would sound really wrong, of course, I am ill, I’m always ill. Today I can draw a clear line and say without a doubt that for the past week, I have been what I would call ill. That is a picture I am sure many will relate with, illness has a huge range, a range that runs from acute to chronic and because you are one or the other, doesn’t mean you can’t have both. I know I am both, but I’m not sure if the chronic is behind the acute, or it’s totally separate. You can’t strip one away from the other, our bodies don’t work that way, we are whole creatures and we feel everything as a whole and that is where the problems begin. My pain levels are raised today, everything is raised today, normally I can pinpoint the catalyst, normally I can be sure of what I am saying and writing about my health as I don’t ever feel there are grey areas. I long ago gave up trying to say this belongs to my PRMS or this to my Fibro and that to my COPD and so on, it doesn’t matter which is behind it in normal everyday life, as I just get on with it. But today it does matter, can I cure this, do I need assistance, is it something serious, I don’t have the slightest idea.

I am so used to dealing with everything my body throws at me, in just getting on and living my life, that finding myself feeling as though I want someone else to make me better, is an alien concept. That is how I feel today, that I need someone to take care of me, to make me feel better and to take this whole thing away and just let me be my normal in pain and ill me. If I could hide, if I could vanish into sleep and wake feeling better, I would. Last night showed me this isn’t going to work that way. My magical sleep isn’t my wand of life right now, as I woke just as I went to sleep, feeling acutely ill and completely confused by it all.

Read my blog from 2 years ago today – 30/05/13 – Where your partner stands

Today started with an unexpected bonus, Adam had read my blog from yesterday and without saying anything made a rather sleepy and squinted eyed journey across the living room to give me a kiss. He wanted to apologise for the snipping and impatience. I didn’t write it to get such a reaction, I wrote because I wanted to……

Focus point

I spent nearly 2 hours lying in bed awake, doing nothing but lying there feeling the contents of my intestine inching it way around my body. I couldn’t believe the pain it was causing and how it just wasn’t giving in and returning to the normal human state of unnoticed. It’s odd how it never once entered my head that part of the problems I have with my guts was down to a heightening of the pain sensations, rather than being in danger of my guts bursting until the consultant suggested it. I know all too well that one of the things that PRMS does is to create pain for no physical reason what so ever, yet I never once allowed for that possibility. It is deeply ingrained in our minds that pain is there for a physical reason, be it damage or disease, that even now I still expect there to be a reason other than mad body syndrome. Even being reminded of that fact and being very aware of it, when it hits you with an intensity that makes you want to cry and waves of sweating and shaking are traveling through you, believing there is no physical reason is almost impossible. There were four distinct points, leading edges where not just the pain as it moved was clear, so was the pulsing of the blood passing around it and that is the factor that makes me not believe. I have never felt that anywhere other than inside me and I am totally sure it is the factor that made me dismiss the obvious.

I lay there for an hour, my focus flitting from one point to the other and doing everything that I could to relax, especially as my diaphragm was so tight that my breathing wasn’t just shallow but painful. It wasn’t just my stomach that was driving me mad, my entire body had pins and needles combined with a burning sensation. It didn’t matter how I tried to not pay attention to it, to distract myself with thoughts or well-practiced systems to put the pain into a background position, but the point came that medication was my only option. I had first woken at just after midnight, with the only sensation I was aware of was the desperate desire to empty my bladder and a headache. Opening my eyes to find that I had been lying there in pain for an hour actually shocked me at first. It was a long way from the first time that I have had that happen, yet even now it surprises me as it feels it should be totally the opposite way round. The fact is that when you are so focused on anything, time passes unrecognized, pain is a totally absorbing thing, just as anything else can be. You mind is so focused on what is happening and keeping yourself from reacting to all the bazaar thoughts, fears and instincts, that time is irrelevant. All you know is what is in that second, the hours no longer matter. Sleep was clearly out of reach without some kind of action and the only one open to me at the time of night and as everything else had failed was a booster pill and a trip to the kitchen for a cigarette.

If I had needed it, which I honestly didn’t, the fact that my entire digestion system is now involved was totally backed up by taking just one pill, it got stuck. Just like my gut, I could feel its position in my throat exactly and it managed to be stuck in four positions before it found it’s desired location. Each time it stopped moving, I went through the array of tricks that I have used for years and each time it moved, I thought that’s it. Ten minutes plus, from mouth to out of my neck, where below I can’t feel where anything is until it reaches my stomach. At first it was just pass the entry of my throat and it was stuck sideways, I could clearly feel each end sticking into me in a way that something so small should never be felt. One and a half centimeters of concrete that I somehow had to make it turn so it provided a smaller smoother profile, which should have then just slipped down with ease. It turned after the second stop, but still my muscles were clearly still holding onto it. Relaxation then swallowing repeated until it finally released, eventually had the desired effect. If it were just tablets that did this and if they did it all the time, well I would return to crushing them all as I used to, clearly not the slow release ones, but the rest. Anything, and I do mean anything can land up sitting in my throat. If it’s while I am eating, well clearly nothing else can go down until I manage to clear it. I often just give up now, as I am totally fed up finding myself with food stuck and anything I try to add to it, well it just makes things worse and normally returns to my mouth in seconds.

The pain of my throat spasms is totally covered by my meds, there is no pain, just areas where nothing can get past. It’s phasic nature has led me to no longer even mention it to the doctors as I have now had my swallow investigated three times. The first showed exactly what happens, each thing I ate as they watched on their screen, got stuck over and over. I was glad when the test was over, it wasn’t the fact that what I was eating was radioactive that bothered me, it was the taste, sweet to the max and totally disgusting. I was an inpatient at the time they investigated, so it was on during a phase it was happening in. The second time was when the pocket appeared and the food was stuck for hours on the right-hand side of my throat. It took a week to get the appointment, but they saw the pocket, but not anything getting stuck anywhere else. Then I started gagging on my food, over a month passed before I was seen, this time they didn’t see anything at all. It is now on my list of waste of time procedures as all they have ever been able to do for me was to teach me to tuck my chin into my chest before swallowing when things were stuck. That position, not the instinct one of putting your head back, is actually the one that opens up the throat by stretching it and it does work a lot of the time. To me, they are expensive tests for nothing. There is nothing that they can do to help, other than giving you this powder to put into your food and drink, it makes it thicker and apparently less likely to choke on it. Sorry, but thick gin and tonic just doesn’t appeal.

It felt like seconds from finally getting rid of that tablet, to when the alarm woke me. When I was supposed to be getting up, all I wanted to do was return to sleep, but it was morning. All that pain of last night has achieved nothing. There isn’t even the slightest sign that I need to go to the loo or that anything is even near that level in my body. My morning meds also got stuck, but not for too long and I am aware of every seconds sleep I missed. Another night over with, another taste of life with PRMS and another list of things that I can do nothing about other than live with them and hope that tonight will be a better one and to be grateful that it wasn’t a lot worse.

Read my blog from 2 years ago today – 29/05/13 – A separation from sparkle

The long awaited cymbal has at last arrived late yesterday, so my day is laid out now to be a busy one. I have the shopping arriving this morning and once I have phoned Jake he will be here, probably for about an hour, although I am thinking now that it might be a better idea to ask him to…….

A personal sanctury

I have woke up in pain this morning, a pain so bad that I hardly knew how to walk when I first stood up, yet I slept all night. I really don’t understand pain, you would think that by now I would be an expert yet it still surprises and confuses me. Once again, the pain is all around my mid region, but worst over my kidneys and yet again going for a pee when I woke was almost a waste of time. I am sure that just like as has happened in the past, sometime in the next hour I will go again and pee for Scotland. I don’t get it at all, but when you are being sliced in two by razor wire, getting anything is pretty hard. I am just hoping that when I take my meds in the fifteen minutes that they will bring with them an improvement. If there is one thing I wish I understood, it has to be how on earth did I sleep through this pain for however many hours it took to get this bad? I have had lesser pains that have found me up and sitting in the kitchen praying for improvement so that I could find sleep again, yet something that I would put in the hell brackets, I sleep through? I may not understand it, but I am so glad that I do. Sometimes I do find myself asking questions that I don’t want anyone to investigate in any way, as I know that what I am questioning is a complete blessing. Unless, of course, they can tell me how to sleep through the lesser pains as well.

Adam had taken today off work as he has rather a backlog of things that he needs to complete for his college course and just like the rest of his life, he has left it all to the last minute. Actually, I’m not being fair on him saying that as he has improved a huge amount over this year. Those few weeks that we had at the start of this year when we talked over a million things and sorted out many events of the past that hadn’t been dealt with, have really made a huge difference to him in more ways than one. I find myself even now doing what I know is the wrong thing, not telling him at the time what is happening to me. It hard though to admit that you’re not dealing totally with your own silly body. I find little point in worrying him, rather than letting him read it after the event when he knows and can see that I am still alive and still working my way through life. Like right now, what would be the point in telling him that the pain is so bad that I just want to disappear back into my bed. He would say “go then”, and then spend the next hour worrying that something major has gone wrong. I guess we balance each other really, I worry about little and he worries about everything.

I don’t know why or how my body has developed this ability to shut out severe pain by sleeping, but it knows it too. Whenever my pain levels are elevated, my instant reaction is to want to go to bed. That message screams its way through my head almost as loudly as the pain does. It is one of the reasons that fear becoming bedbound, as either I will just sleep forever or worse still, will the magic of bed, lose its power, leaving me in pain that I can’t escape. It’s odd how we all put such high values on what after all is just another piece of furniture. From childhood on, our beds are our safe place our sanctuary and once there we are protected from all evil, even the monsters underneath them. As my health slowly goes, our bed has become somewhere to escape to, which is probably part of the reason that I refuse to have a TV in the bedroom. Bed is the totally wrong place to have anything that will distract you from the reason of being there. Which is yet another reason that I hate the idea of being bedbound. There is no way that I will be able to stand not being able to have the TV, if I am stuck there with nowhere else to go, yet the idea of that box crossing the threshold of my sanctuary, still seems so wrong, even in that context.

There is one odd thing that I have noticed recently, on the morning that I wake in pain like this but haven’t been up during the night, I always seem to wake with a headache and my limbs a stiff. I really do get the impression that they are nights when I honestly don’t move an inch, not even my legs which according to Adam have always been active. Sleeping on my back doesn’t seem to have changed that, in fact, it is worse as my legs now manage to totally escape the bed so that my feet are on the floor. Restless leg syndrome is well known and can happen to anyone, even without any of the conditions that I have. Those of us with MS are more likely to have than others and, of course, that means my body just had to join in. Their night time wondering is bad enough, but they do seem to have the ability to move by themselves while awake as well and the weird sensations are something else. Years ago I thought it was part of my PRMS and it might still be, but when I read up about it, I couldn’t believe that for once what I read actually matched. Odd sensations like my skin is actually crawling, or that there is liquid, i.e. blood running down the outside of them, were universal. To be fair though, this is a condition that I have, but Adam suffers the worst from, his sleep is often disturbed by it while I sleep soundly. My torso and head may not be moving at all but my legs and arms are all over the place and yes it does affect your arms as well.

Sleep for me isn’t always a peaceful process, but activities or not, it is an escape. Last night I believe it was a deeper escape as there was little evidence that I was on the move, even the duvet that I tuck around my feet when I go to sleep was still tucked tightly. Yet here I am three hours after waking and still in the pain, although, at a lower level at last, that was there when I woke. My headache has gone, either because I am now distracted or whatever caused it is fixed, as is the pain I had in my neck and left shoulder. It appears that not a single second of my life isn’t changed in some way by this illness that I live with. Awake or asleep, it is always making it mark and makes sure I am aware of it eventually, if not at the time.

Read my blog from 2 years ago today – 28/05/13 – Doctors and possibilities

The phone call has been made, so there is no going back now, I am expecting the Doctor here sometime after 1:30pm, unless of course he phones me instead. I still would rather see him as the problems are growing and there has been for me no resolution to the all the tests that found nothing. There may have been nothing inside my gut, but something still…..

Coordinating life

I didn’t notice it when I first woke up this morning, but suddenly this house is cold today. Why? I don’t have a clue as it has been a full two weeks without the heating and without feeling cold at all. It may have been the speed that I woke with and left the bedroom that meant the temperature didn’t touch me to start with, or just the fact I needed the loo. I was so pleased to wake feeling like I had to move quickly as things were at last moving inside me. I am under no illusion that I am anyway near being clear, but just going at all was enough to make me not to angry at waking half an hour early. My plan yesterday of not eating anything of any great quantity actually was really easy, I just wasn’t hungry. Each of the three pancakes and the small amounts of yoghurt that I ate, all seemed like too much for me. I don’t think that I have been this restricted in the quantity of food that my stomach will take for several years now. Just like all the times in the past, I feel fine, then suddenly, bang, I feel ill, full and unable to even put even another crumb into my mouth. I have tried many many times to just clear what is on my plate, something I was brought up to do and just never quite managed to shack. That last final little bit turns into a spell spent in hell. It makes me feel so guilty for forcing my children to eat everything on their plates, as I can remember seeing on their faces the same expression I know is on mine, one of I’ll die first before this goes anywhere other than the bin. When I have been on my own, I have quite frequently even had to spit it back out of my mouth as I am gagging on it and I can’t make it go down. Mind you I can gag on salvia at times, so I don’t suppose that is a good gauge, but at the time it is a powerful one.

I thought at first that it was just a coincident, but recently I have been finding myself more and more once again having a problem between breathing and swallowing. What with everything else going on I have been dismissing it as an oddity from the past as I haven’t been bothered by it for a long time. As I said a minute ago, I can gag on salvia and it wasn’t a joke, that is the total truth. I even landed up in the hospital once because of it, for about a month in total, I couldn’t get the coordination between speaking, swallowing and breathing right at all. In the last few weeks, I have had short spells of it. I have suddenly found myself unable to breath because all the muscles in my throat are trying and wanting to swallow, often when there is nothing there other than a tiny amount of saliva. Once that swallow mechanism is triggered it is almost impossible to stop it until it is completed. But the same goes for the need to breath, so the two land up fighting each other and I am caught in this knot of not quite panic, but yes, I would call it fear. Looking back, I can see clearly that it reappeared about a month ago. At first it was just the odd occasion but it picked up and can now happen several times a day, but I can’t trigger it. It either happens or it doesn’t and it isn’t linked to any food time, consistency or texture, just the nerves firing all at the wrong time. I didn’t break it down, but I did say the other week that I was getting spasms from my pelvis up to my jaw, well this was included in that statement.

It kept happening yesterday, over and over from when I was eating my pancakes to late in the evening when I was trying to eat some olives. I had about ten in total and I gagged and had myself caught in a spin three times just trying to work my way through them. I can’t prove it, but I would say that it is fair to say that it is all part of this madness of messages that are traveling down my Vagal nerve and producing all the wrong results. It’s odd how quickly you stop panicking about things that fundamentally are things that could kill you. Finding yourself unable to breath sounds as though it should be terrifying, I actually do remember being really scared when we went to the hospital and the doctor took one look at the mess I was in and admitted me there and then. But when you have lived with something for a few days and you haven’t dropped down dead, well it suddenly gets slotted without argument into this is normal section of your brain and once there, they are there forever. I have often wondered how a perfectly average person who has never been in worse health than having a cold, would deal with just one day in my body, how long would it be before they were demanding to switch back. I do often have to remind myself that being in pain and unable to get around, or not being able to breath, isn’t normal. I have come to the conclusion that it is yet another self-preservation thing, our brains have to switch these things into the normal folder as otherwise we would die of fear if nothing else. Just as they say that humans have managed to become the most successful animal who has managed to populate every section of the world because we are so adaptable, it is the same ability combined with our ability to accept, that keeps people like me going day in day out.

No one’s normal is identical to anyone else, it is one of those things that we all think we know about, that normal life, yet every life is different. My normality may appear extreme, but none of us knows just how extreme ours will ever become, not even me. For all I know, this is still the beginning, only time will tell, but the thing I do know is this, no matter what it holds in store for me, eventually, I will see it as normal.

Read my blog from 2 years ago today – 27/05/13 – The magnifier of symptoms

Some days have a feel to them, something you can’t put your finger on but you know is there, like one of those mobile itches. You scratch at it feeling satisfied that that is it, then suddenly and repeatedly it reappears a few inches from where you last scratched. Yesterday was one of those days, I kept waiting to find out what it was, but nothing seemed to happen, each hour passed……