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……

It hurts…..

Occasionally when I pick up the link to add at the bottom of my post for the same day two years ago, I will give the post a quick scan to see for myself what was happening then, today’s answered a question I was wondering about just the other day. It is now a full two years since I was able to lie in bed in any other position than flat on my back, without even letting my hands touch me in any way. I knew it was quite a long time, but two years, without being able to move into any other position, that does surprise me. I guess the odd phenomena of time moving faster as we age, isn’t affected by being housebound as many might expect it to be and that included me. I honestly used to fear being stuck in my home every day and not being able to live the life I once had would mean that time would hang heavy and that I would more and more miss the life I once had, but it doesn’t seem to work that way at all. I have come across many people who haven’t been able to adapt to their life now that they are chronically ill and I truly wish that I could pin point what it was in myself, that has made the process seem to have worked for me, as I would love to be able to help them. Even yesterday I received yet another tweet from someone who was struggling and I felt so bad as all I could do for them was to send what I felt was bland encouragement. I can only think that it has to do with being able to let go of the past and to try and look forwards not backwards. That doesn’t mean I have forgotten my life before, read back a few posts and that will be clear, but I have managed to let go of it and to have built a new not just life, but world that works for me.

Just weeks before their 25th wedding anniversary, my father announced that he was leaving my mother to live with his secretary. I watched my mother turn from a busy housewife with 2 kids still at home and happy and secure in her world of being a housewife and mother, turn into a half dead person who did nothing with her life from that point on. She is still alive and in an old people’s home now, having done nothing other than exist from that day on. What I saw as a kid, built in me a determination to never stop living, that may be what the difference is, the determination to not let anything or anyone stop me from doing what I want, but I learned to be that way, so I believe that anyone can also learn to do the same. Like almost everything in life, even surviving chronic illness is down to us, no one else can do it for us. I haven’t been able to change the course of my illness, but what I have been able to do is to stop it from destroying me as a person and found yet another life to live, totally built by me, for me and in a way that would work for me at every step. It is hard when every time you think you have things sorted, to find that in a short period of time, you have to start all over again because your health has changed again, but it is the only way I have been able to get this far. Survival has to come from inside us, doctors can keep our bodies alive, we have to keep the living.

Yesterdays dramas with the internet was actually fixed very quickly, I was hopeful when they said it might be 72 hrs, that they were just covering their backs and they were, it was all fixed before 1 pm. I did eventually catch up with everything I had to do, but it did leave me somewhat drained of the very little I have at the moment. Nothing has really changed in the last few days in any positive direction, but that hasn’t been helped by all the things outwith my control not going smoothly either. It has though been a great example of how I have changed from a competent person who ran huge systems for a company, into someone who can’t manage one minor glitch with broadband service or a delivery arriving late. It is one of that hardest parts of managing an illness that thrives on stress, creating a stress-free environment works well until the outside world smashes into it. I made a discovery last night that upped my levels again, perfectly timed of course as I was just heading for bed. Adam pointed out to me that I didn’t have any morphine tablet left in the bedroom, so I headed into the kitchen to pick up a new strip of them. When I opened the box I was horrified to find there wasn’t a whole strip left in it, all that was there were two tablets sitting at the very bottom of the box, behind the leaflet that comes with them. I am not just shocked that I only have those two and two here in the living room, but I don’t think I have completed the full box of boosters since November, so I will have started this month with several more tablets than I really needed. I knew well enough that I had taken a lot of them this month, but nothing like that many, it just shows just how much pain I have been in. This now of course means that I have to make the four tablets I have last until Tuesday or possibly even Wednesday, as I can’t call the surgery until Monday and they have to post the prescription to me as I haven’t set up the new service yet. I have always been really careful about taking booster pills, it isn’t as though I just take them at a drop of a hat, I usually wait for at least an hour to see if it will settle for itself, other than at night, I admit I am bit more likely to take them after a much shorter time. Almost every time I have spoken to my GP in the last couple of months, I have been thinking about talking to him about my Morphine levels, but I didn’t, I wanted to see if getting my bowels under better control, would actually help to reduce all my pain levels again as they do seem to feed off each other. They still aren’t under control and if I am honest, right at this second I have pain across the front of my just below my ribs again, not bad enough for me to even think about a booster, but bad enough for me to be aware of it and to know it is already starting to make me sit oddly and to find taking a deep breath uncomfortable.

Nothing is ever easy these days, I have been in so much pain and so tired that I know I am in one of those intertwined spirals, each one feeding the other and making everything harder than they should be. It is the reason why I thought at first that I might actually be in a flare, but then I managed to start separating them and it all made sense, but sense doesn’t mean easier, it just means I can see what is happening. I am beginning to agree with Adam, that it is time that my doctor actually came to see me as there is just too many things that are happening right now. Normally, I am more than happy to keep it to a two minute phone call, quick and over and done with, but not having him here, where I can pinpoint all the different areas of pain and explain how each is different, not involved with each other or clearly part of the same thing, means that I don’t think he is getting the full picture. I will give it one more try on Monday and see what happens, then think it all through again once I have given it a much better attempt at painting the picture for him. I really wish that I had an email address where I could send him a detailed account, that way I could be sure that I am making it totally clear, as vocalisation is one of my PRMS issues, one of the reasons I love to write, as here at least my thoughts seem to flow, even if the hidden truth is it is start, stop, read, read again and rewrite.

Read my blog from 2 years ago today – 7/03/13 – Finding comfort >

I seem to be no longer able to lie on my side in my bed, I used to always go to sleep on my side and then roll to my back where I spent the rest of the night, but lying on either side is either painful of too uncomfortable to stay there for any length of time. The only position now open to me is flat on my back with my arms by my side. I have even given up trying………..


At this second in time I would just love to have a little consistency in my life, yesterday morning I ate my breakfast without the slightest problem, this morning, I managed about half. Why that annoys me or even surprises me I don’t know, consistency has been missing from my life since my very first flare, life in the unknown zone is the only consistency there is once your own immune system has decided you are an alien to be destroyed, mind you I have also been aware most of my life that an huge number of people would agree with the alien bit.

This week is going to be an odd one, as Adam is off work for the whole week, once again they have been pushing him to use up his annual leave so he has this week and a load of days here an there off through the remainder of the year. I didn’t see that much of him yesterday as he hid himself away in the kitchen working on an essay for his college course, it’s odd how life travels in circles, nearly 30 years ago I was in the same position with a husband studying, at least this time I don’t have 2 children under the age of 2. When I went to bed he announced that he was on a role and really felt he was getting somewhere, when I woke at 5:30 am to go to the loo, he was still in the kitchen working, with no intention of calling it a day. I used to be like that, unable to stop doing something and totally disregarding the clock as what I was doing was just to important to me. I have to say in a way, it made me proud to see him applying himself to his work, education was something that had sort of escaped him, even when he went to college after he left school, it turned into one long drinking session, which was still going on when I met him. It’s strange, but I actually envy him, I had had plans so many times to do a degree or college course, but it never happened, now, well I have the time, if I stopped everything I am doing on line, but I now believe there is more to gain here than there is in having letters to add to a grave stone. Adams HNC course had nothing to do with me, but I did push my first husband and many others in to education, in fact the company I worked for, for 13 years before redundancy was a distance learning company, selling courses from hobby to degree and I sold my share of them, in my first role with them. Yet here I sit without any qualifications, unless you count a handful of certificates from when I was working in the hotel industry, I’m a qualified cellar person and keeper of real ales, not much use these days. Outside of those I taught myself everything I needed to know to get me work and through life in general, so many people always assume that I have some degree or other, or that I must be well read at the least, the truth, I haven’t read a book since my first marriage ended and what I did read was mainly science fantasy, not much of everyday value there really. I honestly believe that we can make ourselves what ever we want to be, but not until we are past the age of 25, after that, well no one ever actually asks what qualifications you have, they just ask what can you do for us, then us for you.

My problem with time seems to be getting worse again, I haven’t for months now been able to hold on to the correct time of day, or what is happening at what time. I’ve mentioned it a few times in the past few months, like the fact that Adam now has an alarm set on his phone to make sure that I take my medication at night. I know that I have been taking them for years, but for some reason I started to forget to take them, then would lie in bed in pain trying to work out what was wrong with me. Some days I remember but recently the occasions of Adam telling me to move or my staring at his phone trying to remember how to shut it up, are increasing. In the past week it has been 4 evenings out of 7, that I have blissfully just sat there unaware of the time, but the issue is growing and I am not the only one noticing. The most obvious is my total lack of ability to work out the length of TV programs and how many we can fit in between 7pm and 9pm. I know just how stupid that sounds, but I do it again and again, even when I try hard to make sure it doesn’t happen, it is Adam who has to correct me, or even tell me to go to bed as 9pm has arrived and no we can’t fit in a third one hour show. Yes, I can and do make a joke out of it and Adam has repeatedly told me that “it’s not stupid at all”, but that is how it makes me feel, it is the kind of mistake that not even an average nine year old would make, unless they were hoping no one would notice and they would get to stay up later. You might wonder why if I want to watch something more, don’t we just do so, easy, I wouldn’t reach half way through without going to bed and I would be dead the next day. On it’s own it may not sound like a big issue, but it is one of many examples of how my brain is vanishing.

I have always been bad with names, but not like I am now, it has got to the point that we can be watching TV and talking about it and I will not be able to find the name of the character who is on screen that second, in a program we watch nightly. My sitting there pointing at the screen and saying “thingy, there, him right there, what’s-his-name, you know” and feeling myself getting exasperated with myself, is now a nightly event. Adam is incredibly patient with me, but I know it must get to him at times, just as it does to me. Like everything else, I have good days and bad days, but a good day might mean it happening twice in a night, on a bad it’s every second one and I just shut up, well when you can’t talk, silence is your only option. Trust me silence is easier on me too, as it’s clearly not just names, the times that I can’t find the next word is growing as well, once the frustration starts to build, I then start to stutter and the whole thing turns into a nasty mess. I did have one triumph last week, I managed to book the ambulance to take me to hospital next Thursday, Adam booked the last one, but I decided to do it and despite of the stupid press button system and the same stupid questions they ask every time I got there without getting wound up. I actually think it was helped by the fact the guy on the other end couldn’t pronounce the name of our street, it Scottish and a bit of a tongue tier, so we sounded as bad as each other.

I can still laugh at myself and the mess that I call talking, but when you feel fine inside your head and words can pour out of your finger tips, only getting stuck once or twice in a couple of sentences, to then find that your mouth is your obstacle to the world, is painful. My voice has been the one thing that made up for my lack of education, I was given election lessons and with a relatively soft Scottish accent and a fast brain, meant that being a DJ, or a sales person were perfect roles for me, when I started to stutter and get tongue tide, selling was clearly no longer my forty, but my logical mathematical brain took over and took me through to the end of my working years as an Operations Manager for the same company. Just the idea now of sitting in a boardroom meeting would be laughable, I never once thought that of all the things I would loose this would be the one that is the most life changing and the most devastating when it comes to me, myself as a person. Next to our appearance, how we sound, how we put together our words and express ourselves, well they are us, loose it and we are loosing ourselves.

Read my blog from 2 years ago today – 2/11/12 – The visit >

Don’t talk to me

I know this is going to sound contrived but it’s not, I still didn’t quite manage that one job I had lined up for yesterday, a shower. As all to often happens the day moved on and suddenly it was too late, too late because there wasn’t enough time left for my hair to dry before I once again had to put my head on it’s favourite pillow and sleep. It’s been a long time since I last used the hair-dryer for many reasons, but one of the biggest is that my hair is now waist length and over dyed so many times, that I fear that the dryer will be too harsh and more will just snap off. Having said that I now also have the most common problem that women who die their hair have, major grey roots spoiling my perfectly purple head. I have lost track of the number of days that one has been just not done for now, probably better to say weeks rather than days. My beauty queen days are long gone so it isn’t really a huge problem any longer, mind you I was 11 when I last put on a bikini and strutted around a swimming pool. Now that’s a memory that got me into all kinds of trouble, I still don’t get what all the fuss was about, I entered the competition and won. It was just one of those small competitions that almost every swimming pool where there were large numbers of holiday-makers held once a month, I entered just because I was there at the time. I was delighted, but my parents went through the roof, I thought they would proud of me, but I hadn’t asked for their permission and that meant I was in trouble with them. Although it was during the summer holidays, it also got me into trouble at school, my picture was in the local news aper and my headmistress saw it and demanded to see my parents when term began. Apparently my behaviour was unseemly for someone attending that school and yet another black mark appeared on my records. Oh, how the world has changed since the beginning of the 1970’s, I think these days most parents would tell the school that it had nothing to do with them, well, at least, I know I would have. So much trouble and all I got was a prize of £5 and a the worst black eye I have ever had, just hours after winning I feel in the adventure playground and bounced my face off a log, I guess everyone including fate thought I was in the wrong, but I bet I was the first just crowned beauty queen with a black eye.

It’s strange how memories like that will reappear without asking them too, all to often I like most people I suppose, remember mostly when things went wrong, or when I was in trouble of some sort or other. I often wonder if I was even not in trouble, or not doing something that if my parents had known about, I would have been in trouble for. I am sure that I was happy at some point as a child, but those memories seem to have been over powered by everything else. I have tried scanning through my life in Aberdeen but it is so sketchy now and feels so far away that it is almost as thought it was a life that belonged to someone else. Even my first marriage has become just the same, other than moments connected to my children, the rest well it’s also slowly been wiped from my memory, just moments that connect and a lot of blanks and flashes of pain. Until I hit my 30’s my memories are so hazy that I can’t always get to grips when it comes to order or place, I just know what happened as a fact, but without detail or event location and timing. Maybe it is the same for everyone, I don’t know as I can’t see into others minds, but it feel personal and feels often wrong.

I didn’t set out to write about any of this today, but those who have read for a while will know that my post often contains sections of ramblings through my past, it took me a long time to work our why but the answer was so simple when I found it, that it seemed stupid that I didn’t see it straight away. I live so much in the past, as well let’s be honest, not much really happens in my daily life now, I know that that is why I hate talking on the phone, conversation when you have nothing to talk about, is rather dull and one sided, all I can do is listen. I only really have three things I can talk about, what’s in the news, how my health is at that second and the past, mix it with stutters, brain freezes and my latest trick of saying words in the wrong order and conversation is a minefield for me. For months now I have had a list of questions for my brother, but he hasn’t answered either my email or my letter, I could pick up the phone, but what and how do I say anything he will understand. By the time I had dialled his number, I know that I would be in a spin and my ability to make myself clearly understood will have diminished, I will be a stuttering mess and probably will forget, even if I write them down in advance, all the things I want to know about my mother.

We all take communication as a simple everyday thing, something most of us never have to think about, or even know we are doing it. My mind can deal with ease when it comes to writing, I can go over it and over it checking not just that it makes sense but it really says what is in my mind, ask me to talk the connection splits. Somewhere between thought and voice, it all goes horribly wrong. Adam is used to it, even if it is all muddled he knows what I mean, but he has been listening to it slowly changing from strong confident and to the point, into long silences, words missing, stutters and twisted words. But for someone like my brother who hasn’t spoken to me for ages, will he understand, will he be able to take time and listen to all of it not just the words, I doubt it. He isn’t known for being a quite composed person, he has a temper, a brain injury from birth that has left him with no patience and little ability to empathise. Talking with him takes more patience a control on my side, that I know I can’t handle any longer. I now find anything that has to be done over the phone so difficult that I avoid it, I “don’t do”, conversation even face to face is hard unless the person knows me, but even then I hit walls that drain me of energy and leaves me just wanting to send them away, as I can’t manage any more. Talking is a really strenuous thing to do and guaranteed to end with me in silence, unable to fill it in any way at all.

Please read my blog from 2 years ago today – 26/02/12 – An MS balance? 

So let me think, not the lead to the most exciting blog you might think, well the only way to find out is to read on. I went on my memory trail earlier today, it’s something I do from time to time, it’s a great exercise for me and I expect for anyone else who has a slowly fading memory. I have a fear that the day…….

The start of a thought….

Yesterday brought me on blessing that I had hoped would be worth the money I spent on it but like many things I had to wait and see when they were eventually arrived, confused? My new glasses arrived, the ones especially for sitting here typing! I had been a little surprised when I recieved a phone call on Friday asking if they could deliver them on Sunday afternoon but I was more than happy to say yes and just after mid day they arrived. It may sound a little silly to anyone who doesn’t wear glasses but to suddenly be able to see the screen clearly, without leaning into it, is wonderful. I discovered to my surprise about 18 months ago that there were mobile opticians and I was delighted with the ones I use daily for watching TV, but I made a huge mistake and had the lenses in my second pair changed for reading. I am sure that many people will have made the same mistake, it was the standard set up for the older people around me when I grew up, distance glasses and reading glasses. I hadn’t actually sat and thought about how little I read other than off my computer screen or TV, yes the odd food label but other than with the strongest magnifying glass, I bet very few can actually read them at all. The new reading glasses were never used, they just sat in a my case. It cost me £50 as it wasn’t a full 2yrs since they were last here but I am happy I spent every single penny of it as it has changed everything, between the two of them the world is much clearer place.

Despite sitting here smirking on the inside as I could actually see what I was doing, the rest of the day became stranger and stranger as it went on. I had started the day very much as any other day, Adam had arranged to go out for a couple of hours as he has joined the gyms run by the council, there is one not too far away and they are open 24hrs a day, so on the nights I crash out early he can now go along to the gym and do some cardio workout which he can’t do at home, he has weights and bench here but there really isn’t room for any more machines. Just after he left I headed off to bed but only managed to sleep for about an hour, waking because I was so cold. Wrapped in my dressing gown I went round the house shutting most of the windows and settled myself once agian here, but not long after I was sweating. That was exactly how I spent the next few hours, shivering at one point and sweating minutes later, taking on and off my dressing gown and opening and shutting windows.

Adam came home about 3:30 and wasn’t too happy to find the windows shut, he is one of lives fresh air fends, so I agreed for the living room ones to be opened again but within minutes had goose bumps, although try as I might I couldn’t actually remember what they were called and landed up describing them to Adam so that he could tell me. At no point did I actually feel ill, other than in the way my MS makes me feel, but as time passed that to was becoming heightened as well. By 5 o’clock I was getting some what confused and words were not coming to me with any ease, I felt disconnected from what was happening and between the fluxes of temperature, the discomfort and pain from my diagram was once again permitting me to find no way of sitting with any ease. Just like then, right now I can find no logic, other than what I have described there was nothing to account for what was happening.

I honestly wasn’t feeling ill, or even felt as though I was coming down with something, there was just the increasing discomfort and my temperature flares and drops. I put up with it until just after half past 7, long enough for my evening meds to kick in, just in case they had somehow not lasted as long as they should have, but there was no difference. I was left with just one option and that was to go to bed and sleep, but even that didn’t work as normal as it took me a long time to drop off, as I could find no comfortable position and I was still flaring in temperature for a few minutes, than crashing into being so cold I had to tuck the duvet around me. If my temperature had held at one end or the other I might of put it down to age, but I never stayed hot or cold for more than ten minutes, before it all changed again.

Right now I am sitting here as though none of yesterday happened at all, other than still the heightened discomfort from my diagram, although nothing like it was yesterday. I really can’t explain how odd it all was, but I can remember nothing like it before. To be honest it was the confusion that worried me the most, yes I do get confused but I had actually got to the extreme of actually typing things into Google just to find the word I was looking for. I actually find that rather frightening, to be that lost when all I want to do is talk, may be it’s a good thing I can’t go out and about. Actually just sitting here thinking about trying to deal with the outside world shows me it is something I would rather not have to do again. I can clearly imagine just how I would be treated by exasperated shop assistants and taxi drivers, I doubt any would be happy to wait while I checked the next word on my mobile. I have always to date seen myself as housebound due to my lack of mobility, but I suppose the truth is much bigger, I am housebound not just because of me, but also because of the rest of the world.