Odd only gets odder

I woke feeling as though I was sharing the same death as King Edward II. Getting out of bed was total agony, but I had no other choice, clearly, my body was demanding, that I moved as fast as I could. I was in so much pain, that for a second, I hesitated as to if I had enough time to put on my dressing-gown, or if I just had to chance it. The time caught my eye, 10:22 pm, I had only been asleep for less than an hour and a half, it made no sense, but little had in the previous 6 hours, why on earth would this either. 10:22, Adam was clearly going to still be up, so time or not, the dressing-gown had to be put on. I don’t think, that Adam has seen me naked at all in the past 10 years, I won’t let him these days, as my body is such mess after years of illness. Last night, proved just how deep my embarrassment goes, as there was no logical reason to extend my pain for even a second. Once covered all I had to do, was to get out of the bedroom, that was when I woke up, enough, to start questioning the pain and what was causing it. The second my backside touched the cushion on my wheelchair, I found myself holding my breath and unable to let my entire weight settle on it, but there really wasn’t a choice, I had to get to that bathroom and now. Once settled, I reached out in front of me as far as I could, I managed to just touching my spare dressing gown that hangs on the back of the bedroom door, I grasped it, then pulled and the door swung open. A simple trick, but one that saves so much time, as I then have a clear path to escape by, rather than having to perform three point turns, around the base of the bed.

I couldn’t believe it, not only was Adam up, but he was in the bathroom. I had no choice, I had to call out to him and find out when he could vacate the room. Luckily, he wasn’t as I thought in the shower, he was cleaning the room and soon left when I explained my predicament, but only after moving things, that didn’t need moving across the floor. I think he could see my growing distress, so he rushed past me and let me in. Relief was only a moment away, or rather, it wasn’t. There was nothing there, my lower bowel was empty, which made no sense at all. It didn’t make  sense, there had to be, so I took a chance and landed up putting myself through pain, I can’t even describe, but there was nothing, but more pain. There was no doubt what so ever, I didn’t need to empty my bowels. It was only then that I could locate the pain as slightly, by maybe half an inch too far back, to be what I thought. It was a spasm from hell and all my efforts were just making it worse. My desire to return to my wheelchair was getting lower by the second, as there was a certain relief, just sitting with the affected area, in mid-air, but with Adam up, and waiting to get back to his night time chores, I had no choice. I couldn’t even enjoy the cigarette that I lit when I reached the kitchen. There was no comfort, stood, sat or in any position I could create and some of them were rather odd, but, worth a try.

All of this started in the afternoon. I had been making a batch of psyllium pancakes, as I had totally run out, so tired or not, it had to be done. With the first dozen cooked, I had to ask Adam to take over. I can’t actually put it into words just how I felt, even at the time, all I could say was that I felt wrong and I clearly looked it, as from that point, until bedtime, Adam checked every few minutes. It wasn’t as though it was one given area, it was odd things all over me. My stomach was a mess, I knew that as it was producing its all time favourite, pressure on my diaphragm, and that too was tight and making things more difficult, but that wasn’t it all. Almost every muscle felt odd, there was a body-wide and brain filling oddness. All the small things that had ever turned up with any previous oddness, had all arrived at once. I couldn’t swallow with ease my own saliva, but I could swallow a drink without any problems. My throat kept locking, and getting confused between breathing, talking and eating, all the muscles, were moving at the wrong time. It felt as though every extreme symptom I had ever had, were queueing up to take a pop at me. My arms and legs were weak, somewhat rubbery in feel, but as heavy as lead. I had no wish or inclination to do anything and swithered over going to bed, but although physically exhausted, I wasn’t what you’d call tired. My bladder control went wrong around 5ish and I landed up haveing to clean myself down and get changed, none of which was made easy, as my only other clothes were still in the dryer. I know all to well, that once my bladder has failed once, it can and often does, do it again, so I then had a fear of moving, which just added in an extra pressure to how I already felt.8 pm was another clear display of oddness. It was time to take my meds, but I couldn’t. Not because of issues with supply, I quite simply couldn’t swallow them, they just kept getting stuck. I’d get it back up, swallow again and drink like mad, to try and clear it. I thought they were gone and I actually sat and waited to be sure, before going to clean my teeth. As I twisted and reached into the cabinet for the toothpaste, five tablets appeared in my mouth. I didn’t burp or anything like that, it was the way I twisted my neck that brought them back up from the spot where they like to sit. We don’t keep a glass in the bathroom, so I had to once more call for assistance from Adam, which sent him off on another worry line, as to would they just appear again once I had gone to bed. It has happened once in the past, but that one is off the scale of oddness. I was told years ago that I have a pocket in the side of my throat, it’s called an Esophageal pouches. Another one of my oddities, as it’s mainly elderly men that have them, but I’ve had mine for several years now. Most of the time, it doesn’t bother me, but when it starts playing up like this, well it normally keeps it up for quite a while, before it settles down again. I don’t know if I’m talking rubbish, but I think it gets stretched every now and then, and once opened up further than normal, it takes

8 pm was another clear display of oddness. It was time to take my meds, but I couldn’t. Not because of issues with supply, I quite simply couldn’t swallow them, they just kept getting stuck. I’d get it back up, swallow again and drink like mad, to try and clear it, then up it would come again. I thought they were gone and I actually sat and waited to be sure, before going to clean my teeth. As I twisted and reached into the cabinet for the toothpaste, five tablets appeared in my mouth. I didn’t burp or anything like that, I think it was just the way I twisted my neck that brought them back up from the spot where they like to sit. We don’t keep a glass in the bathroom, so I had to once more call for assistance from Adam, which sent him off on another worry line, as to would they just appear again once I had gone to bed. It has happened once in the past, but that one is off the scale of oddness. I was told years ago that I have a pocket in the side of my throat, it’s called an Esophageal pouches. Another one of my oddities, as it’s mainly elderly men that have them, but I’ve had mine for several years now. Most of the time, it doesn’t bother me, but when it starts playing up like this, well it normally keeps it up for quite a while, before it settles down again. I don’t know if I’m talking rubbish, but I think it gets stretched every now and then, and once opened up further than normal, it takes time to settle back again. Last night with everything else, it was just not needed.

The pain that I woke up with, probably, wouldn’t have sent me running to the loo if it hadn’t been for the problems my stomach was displaying earlier. If I had been awake, I might have recognised it for what it was, a spasm. I’ve never had one in that position, a few inches further forwards between my legs, yes, but that far back, never. Just like last nights one, they are a bit like someone grabbing hold of you with a large pair of blacksmiths Nipping-Pliers, then twisting then, just for the fun of it. I have learnt several tricks for dealing with those. The most effective is to make a tight roll from a towel, place it between your legs, and sit on anything that will help to apply pressure, such as the arm of a chair. But nothing was helping at all last night. Last night, I resorted to Morphine and relaxation, slowly relief appeared as did eventually sleep. Today, I feel better, but sitting is still a tentative process. Even once achieved, the shadow pain is a huge comfort issue. On the good side, I feel better, not great, but better and I don’t suppose, I can ask much more than that.

Oh! Just in case, you didn’t quite get the opening line of this post, well we don’t own a poker, nor a real fire to have heated it on. Not to mention, I hope I have never upset anyone baddly enough to have someone wishing to insert one into me. If, you still don’t get it, try Google 🙂

Please read my blog from 2 years ago today – 05/01/2014 – No embellishment, just me

There are days where I spend time just sitting reading back comments from previous posts, often they trigger something that I then want to write about or answer within another post, so in that respect I find…..

"Are you alright?"

The first day of June and I have just turned on the fire yet again. I honestly don’t know what is going on this year, it is as though everything stopped back in January and hasn’t improved since then and I’m not just talking about the weather. It’s just been one long odd year so far. I suppose when you are caught up in something that is happening to you and you can find no relief, well it distorts everything else. I have tried so hard not to let myself ever be isolated inside myself throughout my illness, but somehow I feel as though I am suddenly failing to do so effectively. I have realised that Adam is even noticing the change in me. I have lost count the number of times he has asked me recently “Are you alright?”. It’s not so much his words but the true look of concern and confusion as though he is trying straight away to see past whatever the words are that might come from my mouth.

When you live your life locked in pain it is easy to stay there and to not reach out and be part of the world around you. I have made a point of not letting our conversation be stifled by it, to keep in contact in the same way that as I always have, with a mix of small talk and deeper subjects when needed. Lately though I know that I am failing when it comes to small talk, replacing it with silence. As they say it not what is said but what that is held in the science that matters. In my case all too often it is nothing more than pain and the deadening effect it has had over my life. The rest is a side effect of the same, as when you are locked inside you stop paying attention to what might be said later in the day. The TV and internet that have managed to keep me so involved with the world aren’t managing to make their way into my brain as they usually do. We are both used to my having an array of things to talk about and being able to pick up in Adams words clues that pull our chatter in other directions constantly. Locked inside myself, I now all too often don’t hear the subject of his words, far less the opportunity to deviate on the subject.

I used to be so good at putting my health into a compartment where no, I couldn’t ignore it, but I could control its impact on everything else. Somewhere along the passing of this year, it has escaped and the pain and discomfort have taken control of everything else. It is as though I am in some parallel universe within our home, sat here but not here at all. I know I am often just sat staring into space, facing the TV or my computer screen, but totally unaware of their existence. “Are you alright?”, will suddenly cut through it and I am grabbed back into reality to find that once again I had vanished. I can see the concern in his eyes, as he already knows the answer to his question. He knows perfectly well that I am somewhere else, he also know from my body language that pain has hold of me, but he’s not used to seeing it. My skill of covering up the annoying and the draining is now quite extensive, with so many years of practise if I couldn’t cover it all, well I would consider myself as pathetic. You can’t live your life showing those around you just how things really are, not if you want any form of a life you might call normal. I thought that it was a skill I no longer had to even practise, it was polished and perfected. Yet here I am slowly failing again and again to cover anything over.

I know I don’t have to hide it, but I don’t want anyone constantly worrying about me more than they already do. Adam has to be able to leave the house not fearing every second that he can’t physically see me, is a second where he could somehow be helping me. Not that anyone can help when your body is destroying you, if anyone could, believe me, I would have taken it long ago. “Are you alright?”, each time I hear it I instantly know that once again I have failed, that once more he isn’t seeing me, he is seeing my pain. That’s what I didn’t want, that’s why I hide the truth as I am a person, not a person in pain. Just seeing his pain and concern over what is there in front of him, causes me more pain, because it’s my pain, not his and my role is to protect him from it and I’m failing.

This year things have changed so much and changed so rapidly that I haven’t been able to keep up with it. When I was writing yesterday about flares vs. progression, this was what I was really writing about. Flares are sudden, they cause trauma to all concerned but their quickly over and life is rebuilt and goes on. Progression is slow, insidious and uncontrollable, you can’t rebuild as it doesn’t give you those points where renewal can happen. As fast as you might find a chink where you can get a finger hold and start the process it has changed again and you are once more floundering, lost and hearing “Are you alright?”. No, I’m not but I don’t want it to be seen all the time. I want it back in that container just off to one side where life goes on and it quietly grew without daily or hourly impact. This year has found me living further and further under a millstone. One that once it has reduced me to powder doesn’t even allow rejuvenation, it just starts to grind again. There aren’t enough hours in a day to sleep or enough minutes in those hours to rest. Everything just keeps growing and as it does so, it is swallowing up the “me” that I was holding onto so tightly.

This is the start of month six, my sixth month without a single complete waking hour where I haven’t been in pain. I don’t suppose it is a surprise to anyone other than me that I can’t cover it up. That I can’t show a bright and breezy face to life and smile my way through every minute. I am so tired, so past the point of making light conversation and ignoring the truth. I just want a week off, a holiday where I can renew and refresh, time to recharge my smile and time to find those chinks that I can hold onto. You see, I know they are there, they have to be, life always has them. Unfortunately, you can’t take a holiday from your health. I know I am just feeling worn down, it happens to us all and I suspect that I did set myself up for this one as I believed so totally in what the consultant was saying, yet nothing has changed at all. I know I have to give it more time and I can hear all that goes with those words. I just don’t want to be sitting here at the start of July and having to say this is the start of my seventh month.

Read my blog from 2 years ago today – 1/06/13 – Just too much

I realised last night that my toenails were really needing cutting and I asked Adam if he could cut them for me at some point over the weekend, he offered to sort them right then. It was at that moment that I said something I know I say to him again and again, but it’s a statement that along with the reality of the process, conveys just how exhausting life with illness really is, all I said was “I’m too tired”. If you think about it…..

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…….

Food for thought

I thought the other day that I was imagining it, especially as I spoke about it just a few weeks ago, but yesterday proved to me that it is real, I am now getting muscles locking in my throat. For years, I have have been getting things stuck in my throat as I explained a couple of weeks ago, but when I suddenly found myself starting to have a painful throat, I just put it down to being more aware having just written a detailed piece about it and then did my best to forget about it. Something that I was finding really rather easy to do throughout the day, but by the evening I was finding that I was very aware of it and ignoring it was impossible. It is like any other spasm, in that suddenly all the muscles go tight and lock up, luckily just for a few seconds so far, but they leave behind the feeling similar to having a sore throat. I had noticed it a few times in the last few months when I was lying in bed, nothing to do with lying down, more a case of it was so mild that if I hadn’t been isolated in my ear plugged, eyemask cocoon, I would never have paid any attention to it at all. Last week I had a couple of days of it, not badly, but they were there and I did on a couple of evenings really wonder if that was it, I had a straight forward sore throat, but it didn’t feel quite right as it was yet another thing that felt muscular, not just like the internal lining to my throat. I can’t think of a single day recently where I haven’t managed to get something caught in my throat, but yesterday I was eating noodles and one of them managed to get caught. I could feel that my throat was tight and this stupid noodle was still sort of in my mouth whilst also in my throat, but I couldn’t get it clear of my throat at all, then suddenly it released and normal service was restored. It was once I finished my lunch that I started to think about it and I realised then that I have actually not had a single day recently where I haven’t had at least one spell each day with my throat causing me discomfort. I can’t actually say that it is painful, as it’s not, it’s just annoying. I have a vague memory of saying a while back that I thought I had started to have spasms in the front of my neck, well I am now saying that to go with the ones I get in the sides and back, they are in the front as well and inside. That is the one good thing about our necks, they are made up from a network of small muscles rather than large slabs of them, one going into a spasm by itself isn’t usually dangerous at all, just really annoying.

I am sure that if I hadn’t been having issues for years and this had been the first time that food and I were in disagreement, I might have panicked, which without a doubt would have made things worse. I know that the first symptoms with MS can be anything from headaches to total loss of limbs, but I am so glad that for me it has been this slow rise of different things all over the place. I can’t imagine how it would feel to wake up one day and suddenly have one of the major symptoms without the slightest idea of what is behind it. Even when you know what is happening it is bad enough, but the feeling that your throat is closed and won’t open would put most people into a spin, luckily the noodle wasn’t even stuck long enough for me to start being scared, plus I knew what was behind it and I also knew that panic makes everything worse. I guess that I am just going to have to start being more careful how I eat and remember to try and swallow in one chewed up lump, rather than small bits. I was told years ago that in my case it was better to swallow amounts that were big enough to bypass rather than get caught in the pouch in my throat, it is something I do try to do, but like everything else, I forget from time to time. This morning was the first day that I have actually woken up with an ache that runs from the front of my jaw in a two-inch wide band right down the front of my neck and includes the base of my tongue. I have either being having spasms while I slept or more likely my efforts to clear that one noodle, actually means I have slightly pulled all the muscles in that area. Either way, one more area of my body has now succumbed to the onslaught of PRMS.

I didn’t mention this yesterday as well yesterday subject felt far more important to tackle than another post about shopping, even if it is one that is going to affect a huge number of people, able-bodied or disabled. When I had that run in with the rudest delivery driver from hell a month ago, I had checked their terms and conditions and found that I was totally right and what he had said about not being allowed to come upstairs or enter my home was total rubbish. So I was shocked on Monday when I had yet a second, but a very nice driver, stood at my door saying exactly the same thing. He was perfectly politely and he said that the terms and conditions had changed two weeks ago and although he eventually did assist me it was so stupid they way he did it that I was left laughing. He made sure that he didn’t entirely enter the house by keeping one foot outside and stepping forward on the other so he could empty the shopping onto the floor for me. When he left and I had put the frozen items away, I headed back to my PC and checked not just Asda’s but other shops as well, what I found shocked me. Both Asda’s and Sainsbury’s no longer deliver to the flat where the order is expected but just to the “communal entrance”. On reading Asda’s, it is a little ambiguous as to whether or not they can enter the building or not, it too appears to be connected to your kitchens location vertically within the building, so far Tesco has no restrictions. I had more or less decided that I had no option other than to change to Tesco, but I thought it was worth once again phoning the store and I was once again assured that the driver should have delivered my shopping as requested to the floor in my hallway and that if the customer requested help it should have been given. For now I am going to remain with them, but I have said and I mean it, one more driver refusing to simply empty the contents onto the floor and I am off. I do think though that it is wrong that a company can change its terms and conditions like this without telling the customers. If the driver had refused to bring it upstair, which according to the terms, he has the right to do even if it is just on his own whim, I would have had to refuse the entire shop. I can’t help wondering how many angry customers there will be around the country having to fetch their shopping from however numbers of floors below, it could even mean mothers having to leave their children in their flat alone, whilst they bring the shopping up from below. Once again, companies putting in new rules that suit them as it saves time but removing the entire element of service, they, of course, will put it down to insurance costs, but if I let the driver through the entrance system, he is then invited in by me and covered by my public liability insurance, something every home owner has to have, so insurance isn’t a valid reason. As for those of us who really need help, well it appears that we will have to be prepared to declare our illness to every company, just to get that little bit more help from what used to be an anonymous service for all.

A month ago the driver who was so rude and aggressive clearly had a problem with the fact that I was telling him I was disabled as he couldn’t see it, but out of pure interest I decided to test the second driver as to his attitude. I know without a doubt that he didn’t have the slightest idea why I was asking but I simply asked, “If it were an 80-year-old you were delivering to, would you give them the help they asked for”, his answer was telling as he said “I would”. Clearly I was yet again dealing with perception, he couldn’t see anything other than I didn’t walk perfectly, so he couldn’t see why I couldn’t manage to do myself, what I was asking him to do. I really do curse the invisibility of my health, it makes life so much harder for so many of us, I have to admit to wondering about putting my wheelchair in the hallway when I am expecting a delivery in the hope that seeing it might make them think twice, but that to me is a low trick and not something I personally want to do. I know it is human nature to judge others on what we see in the first few seconds of meeting that person, but in the entire 30 years of being ill, I have only ever had one person look at me and actually ask me if I have MS and that was a doctor I met 2 years ago. He was in his 50’s and had spent the majority of his working life in Aberdeen working with people with MS, so he had a good chance of getting it right, but the average person in the street, well they don’t stand the slightest chance of seeing anything. I don’t know what the answer is, short of us all wearing some kind of badge that says we are ill, which I for one wouldn’t want to, I honestly don’t know how this will ever change.

Read my blog from 2 years ago today – 13/05/13 – A why, a what, but not the answer

Yesterday I asked anyone if they could help with a possible theory I had about nerve pain I was having in my head, the pain is always very precise, extremely painful and short-lived, appearing in pulses for a short period of time then vanishing. In the past, I had done the dreaded on in search for possible reasons and I had come across……