What is going on?

I’m tired this morning. That feeling of heaviness that makes your entire body just want to collapse and give up. It’s a tired that leeches all warmth, even when you sit in front of the fire to eat your breakfast, you’re still cold. Ten minutes of direct heat and the result, a warm front and a freezing back with nothing in between, and within seconds of moving, freezing again throughout. I didn’t sleep well last night. 4 am, when I woke desperate for a pee and feeling a pain I know all too well, that one that says somewhere in the next 12 hours, I will be moving my bowels. Why do they have to go through such an aggressive announcement period? Quite honestly, I don’t need more than a few minutes notice, just like everyone else in the world, but that would be too easy for my body. No, it has to ruin the one thing I need the most, sleep. Three and a half hours of lying in bed with only fitful sleep is enough to bring me right down the next day. Right now, despite the fact I crashed my way through the house in a desperate dash to get to the loo, once more proving that filing the top off my scab, has made it safe. Or the fact that I have had a meal and done all I can to make life right, all I want is more sleep, hours and hours of sleep. I may not run my life on a tight minute by minute routine any longer, but that doesn’t mean I can throw my day out the window, and just head back to bed. If I did, then the whole day will be a nightmare, followed by a night that wouldn’t be much better. So I do the sensible thing, I put up with the not so nice, to avoid the totally horrid.

This is the draining bit, the part of all chronic illness, that gives it, its bad name. Those days that often turn into weeks of feeling no more than half alive. I don’t write about them that much, as they are the drudgery of illness. Those parts, that none of us dwells on, as if we did, we would see no point to any of it. We brush it to one side and look for the good, even finding it and bringing out a smile for those around us. But inside, deep inside where it really matters, we are drained. To me, it is where life gets scary. It would be too easy to give in and to climb into bed and hide, in the hope that it will pass. No one out there, not even Adam, would blame me and that is even more scary. The world would allow me to wallow, in the mistaken belief that my health had reached a point where I had to stop and rest. The truth would be, that I was taking advantage of a situation and by doing so, I know that I would open myself up to feeling worse and worse. I don’t believe in this concept of fighting our health, but I do believe in not just giving in to it. Some while say, that it is a very fine line between the two, or that I am splitting hairs when I separate them, but it is an important difference. Fighting to me, implies an active aggressive act, something that I don’t have the slightest belief works. Aggression is a pointless response to anything that is bigger, stronger and more aggressive than you will ever be. It makes far more sense to stand your ground, work around it, with it and at times, even give in to it. You don’t beat a bully by becoming one yourself, any more than lying down and letting them beat the living daylights out of you, will stop them from coming back and doing it again. My body got the upper hand last night, leaving me feeling like death warmed up, but that doesn’t mean it has won, I’m still standing and I don’t intend to lie down.

Sitting feeling like a zombie isn’t a good idea either. For me, the only way that I have found that works and gets me through days like this is to keep going. It’s counter-intuitive, your tired, but you push yourself to do everything that you normally do. Even listing extra jobs, ones that don’t have to be done today, they could be put off, but by adding them to your to-do list, your plays the phycological game that illness really is. It is a constant case of outwitting it, rather than outmaneuvering it. By making life as close to normal as ever, there is just a chance, that you can jump your way out of the pit you are sitting in. I probably won’t have my shower this afternoon, but by telling myself that I will, well it means I have to keep moving, just to make the space required. If I slow down now, allow myself to just sit and stare at everything around me, or even just the screen, it won’t happen. I could be that zombie that wants to take over, I could sit here and type a few words here and there, eventually making my way to the end. Or I can kick myself up the backside and I can push those words to appear and my fingers to run, not dawdle. I usually land up somewhere in the middle, but that better than landing up still staring at my unfinished post an hour from now.

It is getting harder as time goes on, to find that inner strength to push myself. As I said the other day, my routine has been trimmed and trimmed and trimmed again. As there is a difference between the odd bad day, and a constant draining of life that doesn’t refill. You can’t push forever, that just doesn’t work any more than fighting does. Recognising which is which is hard. I found it almost impossible at first, and I probably did push for too long on occasion, but I did one thing right, I learned. Just as I told the MS nurse when he was here the other day, I know the point were outside help isn’t far away, but it’s not here yet. Neither is the point where I once more have to adjust my life again, but I have recognised from the last week, that I may need to start thinking about it. My body is screaming at me more and more that it just doesn’t want to play my games and the ones my illness is offering to it, seem like far more fun. Oddly, it is lunchtime that has reinforced those thoughts. The fact that I am not only content to stop and take a break, but happy doing it, is screaming at me. I knew that when I found myself within two weeks, mentioning it again. As you know my writing is more mental vomit, rather than thought out and considered facts. I sit here, turn the tap and brain flows out onto the page in front of me. Because I write that way, it all to often tells me things that I hadn’t either noticed or consciously considered. It threw it into my writing and has activated a train of thought that is clearly going somewhere.

I think I need more rest, not more sleep, but more rest. Time to just do, to be brainless and motionless. Time to relax. My body is forcing me to slow down in ways that I hadn’t expected. I thought that the next sign would be just like all the others, that I would go through a spell of being drained and washed out and never completing my day. That I would then like all the times before just trimming my routine and going on doing the same things as always. Suddenly, I have a need to do something different. To open up a new part to my daily life, but I don’t have the slightest idea what. I can’t spend an hour a day sitting in front of the TV eating. That would be disastrous in so many ways. My wheelchair has pushed me into making changes, ones that I wouldn’t have even considered without it. I am even finding an odd pleasure in my shorter breakfast break and my two 15 minute drug routines. I am at a loss as to what my body and mind are trying to tell me. I can’t stand just sitting around doing nothing, yet it seems to be what my body is responding to best and my brain, is trying to push me into doing. By being forced into doing things differently, I am finding physical and mental responses I never expected. I don’t have the slightest idea of where this is going, I guess time will tell.

Please read my blog from 2 years ago today – 09/10/2015 – Searching for the simple and normal

I made the single most horrible mistake the other day after my shower, I didn’t wrap the towel around myself tightly enough and I had the misfortune of being in front of the mirror when it fell away from my body, resulting in my…..


To my amazement I was wrong yesterday when I said that I wasn’t going to the loo yesterday, I did, but I now also know why I slept so well the night before. It was around 3:30 when I woke about ten minutes earlier than I had my alarm set to end my afternoon nap. I just assumed that I had woken early as that was all the sleep that I needed right then, so I just got up, dressed and got ready to go on with my day. As I dressed I noticed that my skin was clammy, the house didn’t feel any different in temperature, but I decided to only put on one dressing gown, instead of my normal two. The stretching motion required in that action triggered a stomach cramp across the top of my stomach. Stomach cramps on their own are bad enough, but as it cramped as so often happens, it put my diaphragm into full spasm. I am totally used to living with it in a semi locked position but when it locks tightly, it isn’t always easy to do the right thing and relax, not panic. The stomach cramp alone wasn’t a stop you dead pain, but one that more than just got my attention. After standing still for a couple of minutes while I did my best to let the whole thing pass, I fetched a glass of coke, I came through here and sat while my PC booted up. My plan was to spend the next hour relaxing while playing one of my games, all part of my trying to do less and relax more. Just sitting there I found myself getting more and more uncomfortable and sweating more and more as the discomfort in my stomach was growing exactly in line with it. Within 15 minutes, I had ditched the dressing gown and was mopping sweat off my body and it didn’t end there. I knew that without a doubt things were moving and they were letting me know about it. Pain levels rose and rose and then suddenly stopped. It was all in my upper stomach and worst as always on the left side below and just under my ribs.

There was another 20 minute after that, which I recognised all too well. The discomfort was moving and I found myself sitting rocking back and forward. I don’t know why I do that, but it is some kind of instinctive action that has a comfort value that I don’t understand. Then just as suddenly as it all started, it stopped. All that remained was a building pressure across the top of my stomach, which also stopped and just settled into its normal pattern of discomfort. I thought that was it, nothing else was going to happen but I was wrong as eventually, I received the message that my body was ready to ditch the results of all that pain. Actually going to the loo, is totally painless, it takes effort as otherwise the pain then starts to build again just lower down. Once I had been to the loo, I started to join all the dots that I had noted.

Every night that I have woken in the past few months had one element of that hour. The most notable other than the pain is waking in a terrible sweat. No, not the menopause, that is nicely under control, if my HRT wasn’t working, I would have sweats during the day without pain, which I don’t get. It has been that bad that on a couple of times I have had to put a towel over the wet sheet and turn the duvet over so that I don’t have to have the cold wet sheets against my skin for the rest of the night. On several times, because I sleep on my back, I have woken with pools of sweat sitting over my eyes held there by my sleep mask. I can’t open my eyes until I have the mask off and I have dried my eye socket, otherwise it stings like mad. I don’t know why I hadn’t put the two together before but I just didn’t have a reason to do so. Yes, I have had sweats during the day due to the pain, but never that bad. They are usually just short lived and vanish as quickly as the pain subsides and just like at night, I am never overheating, just sweating. All these things have been happening more and more since I started on the Psyllium. The reason is easy to see now, everything is bulked up in sizes and moves more freely as it produces a slippery sort of gel. Whereas in the past nothing moved or when it did it was sudden and very short lived, now it is all moving more and causing much more pain. If I needed proof, last night I woke covered in sweat and I sat rocking in the kitchen as I smoked a cigarette and my body normalized again. That time it wasn’t productive, just a prelim to what I hope will happen later today. Right now, I am very uncomfortable, rocking nicely and about to take a booster pill as after an hour and a half of it, I have had enough. When I saw the consultant he did say that the Psyllium would fix constipation and that the pain was something I would have to pursue the answer for, he never said that Psyllium would actually make the pain worse.

It appears that there was a rule that was written in secret a long time ago, that even doctors don’t seem to know. Change anything and you will without any doubt upset something else. It is one of the features of dealing with chronic conditions especially if you have more than one and it is guaranteed to make life difficult whenever it can. For the last few months, I have been living with the fact that all the problems that are going on with my insides thanks to my PRMS has been upsetting my COPD. Learning to breathe when your stomach is causing enough pain to double you up is hard enough without other things joining in as well. I know I am still in the early stages of this trial of the Psyllium, but it just shows how even such a small thing as adding something organic to your diet, can actually be the route of huge issues. If it had been suggested by anyone other than a doctor, I know that I wouldn’t have even tried it. I have had similar reactions over the years to so called cures and remedies that I have spent money on only to find that it made something else worse. Despite the fact that the Psyllium is working, it has also made me even more reluctant to try anything else. I am only happy to keep taking it as there is one huge fact, I have to go to the loo, if I don’t, well the outcome isn’t pretty.

The peppermint oil is already history as without a doubt it was making me vomit and was causing heartburn, something I don’t actually understand as it is used by some to cure it. My body is fighting so many different things and I live on such a fine balance that I also live constantly in fear of upsetting anything else. Multimorbidity is a horrible word and horrible thing to live with, but there doesn’t seem to be a specialist anywhere that has the ability to understand my selection of conditions and how they affect each other. Something that doesn’t surprise me as I am still learning exactly what it means and what is happening to me. I guarantee that is a complaint you would hear from every single person who equally have their own selection of conditions. We have moved on beyond living with a chronic illness, I never realised that you could, but you can, and we have.

Read my blog from 2 years ago today – 11/06/13 – Mysteries and problems

I have just come off the phone from my electricity company who were supposed to be here yesterday morning to check my meter. I know some might say that as I am housebound it didn’t inconvenience me in any way, but waiting for things that never happen is really annoying. I had at first a problem getting a morning appointment so I waited…….

facing my fears

All I am going to say about the last 24hrs with my insides is, not good, not good at all. I feel as though they are taking over my entire life since I came home with that list of things to try. I am either trying to make things to eat with Psyllium or trying to eat the results, not alway as easy as it should be and the rest of my time wrapped up in pain. Being stuck in a situation that you can’t change in any way is wearing on its own. Being stuck there along with everything else in my life, well it’s pushing me into places that I don’t like going, those dark spots in my mind. The problem with those places is that they are an uncontrolled and uncensored free for all and they will drive you insane with worry over things that aren’t even happening. After two full weeks passing where I have done exactly what I was told to do, to not have one single positive sign that the doctor may have got this right, or that there is a possible positive outcome, is now beginning to wear thin.

I remember when I got my diagnosis with my PRMS that I thought it was the end of wondering what on earth my body was doing to me. I suspect that is a universal belief, as there it is in black and white, you have it, the reason for everything you had been battling against. When that letter came through, although the doctors had explained it to me in advance, I really let myself believe that life was going to get easier in so many ways. I know that may sound like an odd reaction to being told you have a progressive degenerative illness, but it’s not. You believe that if they know the cause that they will then be able to do something about it. I thought it was also the end of living in those dark spots your imagination runs riot and you convince yourself that you are dying, perfectly natural when no one can tell you what’s wrong. You don’t realise the truth is that that name means everything will be blamed on it and nothing done as the underlying cause is incurable. The more you hear that, the bigger those dark spaces start to get again, as you slowly realise that you were right all along, you are dying, not instantly but slowly. Imagination can be a wonderful thing, it can create magic, beauty and love, places you would want to live forever and places you wish you could share. It can open up worlds that can exist nowhere else, including the ones that horror writers feed on and scare the hell out of us with. I never have seemed in need of anyone else’s imagination when it comes to scaring the hell out of myself, my imagination can do that with phenomenal ease and regularity. With the help of my body, well let’s just say, no one, not even me wants to go there at all.

Last few days I have found myself locked in one of those dark spaces, my imagination was running faster than I could away from it. When you are in pain, even when you know the reason for that pain and you know your not at that second in real danger, our imagination has an art of totally ignoring all the logic it is being fed. I get scared, just as scared as I did in the past when I had no idea what was happening to me. In fact, oddly, sometimes I would say it is worse. I used to think that being scared was all to do with lack of understanding. As soon as you saw that the shadow man was nothing more than that, just a shadow, his power was broken. I used to think that being an adult, was all it took to be able to look anything in the face and laugh at it, it appears I was wrong. I can tell myself a million times that the pain I am in isn’t dangerous, it is nothing more than the PRMS doing what it does best. My nerves aren’t telling me the truth, they’re lying, sending out signals that say run, hide, get help, you’re in danger, all lies. Logic, my favourite belief system I ever found, you can’t argue with logic, it is what it is and nothing more or less, yet even logic can’t shine a light into those dark corners and kill the shadow man, as fear isn’t a shadow.

If pain didn’t scare me I wouldn’t be human, I know that. We’re hardwired to react to it as it is our alarm system there to tell us something is wrong and to keep us safe. In this case, the story of the “Boy who called wolf” is wrong, you can’t stop listening or believing what it is telling you, it’s there and it’s real and no matter how many times it cries out falsely, you listen and feel every second. I have always been able to deal with the pain in my arms and legs, no one has ever died from painful muscles without injury. I can see my limbs, I can check them over, make sure there is no cut gone bad or broken bones, limbs aren’t scary things, even when they stop working, their still where you can see them. But when the pain is inside, hidden, doing whatever it is doing for whatever reason, you can’t check it, see it or even often touch it. Let imagination get hold of that and the sky is the limit, what it’s doing, what it’s really doing could be anything. I don’t often admit that I’m scared, but in the small hours when the house is dark and silent and I am awake in pain, I often am. There is something about sitting by yourself, trying as hard as you can to be quiet as you don’t want to wake anyone, imagination suddenly has free rein. I have had everything from cancer to burst intestines, from strangled organs to internal bleeding, none of them real, none of them less frightening because of that fact. I never fear that during the day, but nothing is scary in the daytime, even when I know without a doubt that I have had worse pain in the day, it’s only the night that holds that power.

If there had been one illness that was tailor-made to fit with my fear it had to be this. You see I have never for some reason had a fear of dying, it’s something we don’t exactly have any control over, it happens and that’s it. My fear, my greatest fear has always been pain and having no escape from it and that is exactly where I live now. You would think I would have gotten over that one, but I haven’t. Even now, I fear it more than anything else and it has been part of my reason for not wanting to up my meds faster. I fear building up a resistance to them, of not being allowed strong enough drugs to deal with the pain of the future at home. Worse still that they won’t be able to give me enough pain relief when the pain eventually gets so bad I can’t bear it. It’s ironic I suppose that my greatest fear should become my life, but in my experience that is about par for the course. So there it is, my darkest fear which just like the dark spots that it lives in, I can’t escape it and I doubt I will ever escape it. I know I am a long way from alone in this fear, but just like the middle of the night, pain is something we all suffer alone, no one but us truly feels it as we do.

Read my blog from 2 years ago today – 5/06/13 – Heading for hell and not coming back

I chose yesterday not to write about how I felt for several reasons some as stupid as they get and others totally sensible. The stupid one was simple, I was trying hard not to think about it as I didn’t want to feel any worse than I already did, putting too much attention on something can I have found make it worse, almost as though by….

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…….

We’re our own experts

Yesterday was our wedding anniversary and therefore also Adams birthday, I don’t think that I have ever started two posts with the same opening line before, but as it was true two years ago, it is true today. Since our finances changed dramatically once I was no longer working, it hasn’t been a day of great celebration or presents any more than we respect the tradition on my birthday or Christmas, it has become more a day of good memories for me at least. I find it hard to believe that we have now been married 16 years, mind you not as hard as my family who refused to come as firstly it clashed with my nieces 21sts and secondly because they thought I was totally mad for marrying someone so much younger than me. I loved their double standards then and I still love it, as my sisters husband is 17 years older than her and that wasn’t a problem, so where is the difference in my marrying someone 17 years younger than me? Yet here we are married for 16 years to a wonderful man and in the city I have lived in longer than anywhere else in my entire life and more than happy to say I love both.

My expectations for yesterday were proved wrong in my fear for the intensity of the pain like I had the day before repeating itself. Luckily it didn’t really get any worse as the day went on, other than a slight peak in the late evening, but that happens every day. I still spent my entire day not too sure how to sit or which way to lean as they were all uncomfortable and often painful, but my boosters pills were enough to hold it at a level that I found bearable. Tiredness definitely plays a huge role in my ability to actually deal with anything, something I think anyone with a chronic condition will agree with, but it’s logical really as even if you have the flu, you feel worse at night. By the evening, I was tired, so as always my pain levels rose but nowhere close to where they had been the day before. It wasn’t until I went to bed that I had any problems breathing, something that is now becoming a normal part of my life, but as it isn’t severe and I normally slip into sleep quite easily, I now just see it as my normal, but I have no doubt that I was lucky to get away without triggering a ground hog day.

Looking back at yesterday it should have been the total opposite as there were so many interruptions with people coming. On Thursday afternoon when Adam sat down on the settee, the spring that was supposed to have been replaced when they were recovered suddenly went again. Adam called them straight away and they were here just after 8am to collect it and repair it for us. Both of us thought it would be gone for a couple of days, as they weren’t exactly quick in returning it last time, but at 11 the doorbell rang and there was the settee back repaired and returned to its place in our living room. Even though they did all the heavy work, I still had to do a lot of wondering around moving ornaments and so on, I know our home is small, but it is amazing how far you can walk but actually go nowhere. We had moved everything that was in their way into the kitchen so they could the settee out without breaking anything, Adam had wanted to move the small settee over into the space left by the main one, but I had a hope that we might be lucky and get it back on the same day, so I was at least saved from having to move even more stuff, just to move it back as well. Their visit was followed closely by the gas man who wanted to read the meter and then the postman, I seemed to spend the entire morning just getting up and down of my chair and waddling around the hallway and living room.

It was for that reason if not any other, I was really expecting the pain to start rising and to just keep rising, but it just didn’t happen that way. Yes, I was uncomfortable the whole morning, but I had taken a booster early on as I didn’t want to find myself suddenly unable to move when there were complete strangers around. There were odd sharp pains when I tried to twist myself to reach something, clearly when my diaphragm is locked like this my flexibility is limited, but the gradual rise into pain that makes even breathing too painful, didn’t arrive as soon as I had feared. It wasn’t until this morning that I really started to think about all of this in depth, I can’t help wondering if my activity of yesterday morning, which did have the obvious side effect of both my leg and arm muscles becoming fatigued and making me somewhat tireder than normal, might actually have helped to stop more muscles joining into the lock up. To me, that actually makes some sense, but like everything in my life, it is a constant catch 22.

I have always held firmly to the belief that if you don’t use something, you will lose it, so I have always done whatever I can, not allowing pain and fatigue to stop me until it reached a point where I had no choice. Yesterday I was forced into doing the opposite of what I have been doing in the last few years. I have always taken pain as a sign that I have to stop, well that is usually what pain means and even though I know I wouldn’t have managed what I did yesterday without taking a booster before I really had to wonder around the most, or I would have crumpled much sooner, did working past that point actually have a positive effect or was it just coincidence. It is a really hard one to know which is correct or what how even to test it. On one hand, I don’t want to start taking more Morphine as a way of preventing what isn’t there, but on the other, I know without a doubt, I wouldn’t have been able to get through yesterday morning if I hadn’t. Pushing myself without it has only one result and it doesn’t take any more testing as I have done that one enough times to know what happens, but if pushing it could reduce the speed that total lock down takes to occur, wouldn’t it be worth it? As I said a catch 22. Sometimes I hate my life, not for the things that everyone can see, but because of situations just like this, possibilities and options, which may or may not work and never an easy answer.

If we had the perfect medical service, something that I doubt actually exists anywhere, we would have a dedicated condition expert, who we could talk to at any time of day or night when we have a problem. Someone who would know the answers to all these stupid questions, that charge around in our heads destroying our lives with the constant possibility of us doing exactly the wrong thing, because we think it is the right one. They would know the answers because they would be talking to people like us every minute of every day, gathering all the little bits of information and the results of all the testing we do and right now tell no one. They would be able to build a true database of answers to every question that I and millions must ask daily, from the small and irritating to the desperately important and “you should be in hospital” ones. I am sure if truth is known, that almost every single one of us has actually made our health worse at least once and more importantly, that some have actually died out of trying to work out what to do, just because there is no one to ask and they simply got it wrong.

Right now you really can’t win, we don’t want to talk to our doctors as all we hear is how they are snowed under with patients and anyway, all too often it isn’t really a question for a GP and there isn’t a blue moon chance of talking to your Neuro. Yes, I have an “MS Nurse”, I don’t know if you have tried to speak to yours, but to date, every time I have called they are not there and those who answer the phone won’t talk to you, as your not on their list. So you land up trawling the web and trust me that is no better than trying to work it out for yourself. When it comes down to it, we are forced into being our own experts and all the problems that come with that. So I guess it is back to trying to work it out for myself.

Read my blog from 2 years ago today – 25/04/13 – The years are adding up

Yesterday was our wedding anniversary and therefore also Adams birthday, I can admit this now as well it’s a fact of history. On Saturday afternoon when Adam was working I was woken by the phone, not something that usually leaves me in the best mood or is renowned to get a positive reaction to the caller. For once though I was relieved to find that it was……