A little understanding

What is it about humans that we insist on making our lives more complicated than needed. I became of a small error caused by shifting from one site to another, the links in my old posts, of course, don’t work any longer. I had this mad idea that I could correct one page a day, as I work through adding the links to my post from 2 years ago that are at the bottom of every daily post. It is a total nightmare! I can’t find most of them now and it has made a mockery of some of the subjects as they rely on the links to make sense. It won’t matter until January, as the old site is still there just now, but once it closes, none will work any longer. I thought that blogging was supposed to be a relaxing and soothing process. Somewhere that I could de-stress, sort out my head and set off with a smooth start to my day, not a bundle of aggravation. I guess it was one of those not so bright, bright ideas.

Adam has just left for the day. Odd for a Saturday, but it is his mother’s birthday, so Adam and his sister are spending the day with her. I am very fond of both his mother and his sister. They welcomed me into their family without question. Something that I don’t think all families would have done when their 20-year-old son brought home his new girlfriend who was 17 years older than him. I was simply welcomed in and became part of the family almost instantly. When a couple of months later we announced we were getting married, they were delighted. Once my health deteriorated and getting out and about was not quite so easy, I became used to being left out of all family celebrations. It was my choice really as they did at first make a point of coming here once I wasn’t up to trailing all over the place. Unfortunately, his family have never seemed to understand the concept of time. At first it was just them being late on arriving and wanting to stay long past the time I should have been asleep. Then on one occasion, a few years before I was totally housebound, I had invited them for Christmas lunch, they arrived 4 hours late. I declared to Adam that I was never inviting them here again for any meal. I expected Adam to be on their side and I was ready for the excuses, the reasoning as to why I was wrong, there were none. He totally understood and actually felt the same way. He knew exactly how much work and planning had gone into that meal. He knew I had started to cook and prepare everything days before and he too had put in a lot of work towards it. He had seen the struggle that some of it took and how much pain and fatigue I had put up with, just to get things right. Importantly, he knew what it all did to my health. He knew that I was going to be paying for it for days after as well. Yes, it was my choice to put myself through all that, but that was part of my gift to them, on that day. Although his family knows how ill I am, they don’t live with us or see me day to day. They are really nice people and are caring and loving, but that one instance provided a perfect example of the difference between knowing and understanding.

It has taken my many years to accept that most people, no matter how well they are taught about anything, many can’t make that step over into full understanding. It requires empathy and quite simply, empathy can’t be taught. It may be because I have led what can only be described as a dramatic life, that I find empathy for most situations, incredibly easy. There is one huge problem with that, it is draining and it is often painful. I came across the other day someone complaining about a doctor they had just seen as he had been a little cold and lacking in feeling. I realised from the way they had written their post, that they had missed one simple point. If a doctor or a nurse were to feel true empathy for every patient they saw, they would land up in the mental health department as patients. Clearly we all expect a certain level of “bedside manner”, but to expect anything more than that I think is unreasonable. The medical profession does an incredibly hard job, none of which I would want to do. Our doctors are professionals, not our buddies and I can see that that distance has to be maintained these days. Gone are the days that you invited the family doctor to christenings and weddings and sent them Christmas cards and gifts. They have become more like an oil mechanic who you respect for their knowledge but don’t want to hug. It’s almost impossible from that one post I read to work out the sort of person who was actually writing. But there is one factor that comes into our interactions with doctors I think was missed, the way we present ourselves.

I knew someone years ago who felt the only way to get a doctor to do what they thought was needed, was to threaten them with legal action. He took great pleasure in telling them how his father was a top lawyer, in the position to squash them if they didn’t get it right there and then. On one occasion they complained to me about the attitude of the doctor, they had found them slightly aggressive, I wasn’t surprised. Just like family, we expect our doctors to understand. Surely, they, if there is anyone, has to be the one person who knows what we are going through. I disagree. I along with many other women I have met, actually believe that midwives shouldn’t be allowed to practise until they have had a baby themselves. There is something incredibly annoying about having someone standing there telling you it doesn’t hurt or it’s easy, just push a little more or worse don’t push at all, when they themselves haven’t done it.

Everyone who has a chronic illness seems to have one thing in common, we want to be understood. We aren’t looking for people who pity us, we’re not asking to be waited on hand and foot, we just want understanding. We’re looking for almost the impossible to find. The only ones with a chance of understanding us are those who have the same illness or those who live with us 24/7. Even those who share our condition, might not fully understand as there are so many variations, phases and combinations, make that almost impossible as well. We might share symptoms, lifestyle and aids, but that doesn’t mean we understand fully the effect on another individual, as we haven’t led their lives and we’re not them. Understanding isn’t found in books, it doesn’t come from hearing about it, I don’t think it fully comes from even living alongside us. Adam is amazing, I couldn’t ask for a better husband or carer, but even he at times doesn’t fully understand what I am going through. We can’t expect others to just look at us and know how we are. Our attitude at that second of time only shows that second, not our lives. It is yet one more thing we have to deal with, one more change that we have to make to ourselves, but it is up to us to teach all of them as well as we can. It is up to us to empathise with them if we want them to empathise with us.

Please read my blog from 2 years ago – 08/08/2013 – Adding the hours

I woke yesterday evening, yes I said evening. I was woken by Adam when he came home from work at 6pm, I hadn’t set the alarm as I really thought that I wouldn’t sleep very long, wrong! But it put to test my what if, if I slept longer…….

It’s such a simple thing

I seem to be being hit by waves of tiredness this morning, which after another two nights of disturbed sleep, isn’t really surprising. I had been so hopeful that sleep was going to be something that I was going to get for a while, four nights ago I slept without waking at all and three nights ago well I was up only once, but the pains have all returned full force in my stomach and sleep is once again something I am not allowed to do. I know that at its worst I am awake for just 10 to 15 minutes each time but any spell of being awake, even just long enough to check the time before returning to sleep, seems to just knock me for six the next day. Last night I was up three times and awake once more after that, but when I wake in pain, regardless where it is, I find that I have to get up, just lying there means lying there in pain, getting up usually breaks it and allows me to return to peaceful sleep until the next time. We all need sleep and we all need good sleep, once ill, those needs are multiplied over and over again as your health slowly fails.

It is the side effects of lack of sleep that most people don’t seem to understand, as we have all gone through spells where we aren’t really sleeping and you get over it. Anyone who has had a baby knows exactly what it is like to not get sleep, but you still go to work and carry on as normal, maybe you feel a little down and as though your body is in need of rest, but you just get on with it. That was my opinion as well I had been there and done that, lack of sleep was difficult but not the end of the world, I believed that right up until my health had reached a point where I realised just how important sleep was going to be and has proved to be as time went on. There are so many different things that require that sleep to restore themselves and so many different factors that work along with our sleep that really can change our entire lives. Up until this year, sleep was something that I did with ridiculous ease and without the slightest chance of waking, within seconds of my head touching the pillows, I was asleep and apart from a bomb hitting the house the chance of waking me was tiny. I can map the two thing perfectly, my bowel issues and my lack of sleep go together with total ease, as they have matched each other step by step. I don’t know how I sleep through the spasms and pain the PRMS cause me, I just do, I suppose it is a case that my body has learned to not react at night over the long slow build up that had been the course of my health for the last 30 plus years. December was the last time that I had more than two night sleep in a row without being woken by anything, right to the point that I slept for 12 hours with ease, not even waking to go to the loo or even moving in my bed, waking exactly as I went to sleep. Then all the mess that is documented in the previous posts started and sleep became this monster that I longed for but wasn’t allowed to have. What the exact difference there is between pain in my stomach and pain anywhere else is I don’t know, but there clearly is one as in the last three months every single time I wake it is because of spasms in my stomach. At times, I know without a doubt that it is either just the movement of wind or solids inside of me, stretching and crashing it way around my intestine. Other times it is clearly my diaphragm that has been pushed to its limit from the pressure below, but both are pains still there when I wake and both require me to stand and move around until they release, whichever it is that wakes me, I always know it is just the start of something much bigger.

When you don’t get the sleep you need, nothing seems to go smoothly and everything that you could normally handle, seems like suddenly huge and an issue that is going to take over your life, rather than just another of those hiccups that life likes to throw our way. It rips apart that all so important routine that not only keeps me sane, but is required for every aspect of my health and something I have also written about a lot. Once that routine starts to slip, everything slips, I had my daily online work down to a tee, I could manage to complete everything by 1pm, giving me a couple of hours to myself to do the things I wanted before having to take my afternoon nap. Between my tiredness, the lack of concentration that that causes and the general stop-start effect that it has means that I am once again back to taking all of those two hours, just to complete everything. The longer I am without my full sleep, the more frustrated I am getting by not having the time to rest and just do things for myself, like dying my hair, which now has two inches of horrid grey showing where purple should be. When you are tired like this for what feels like your entire life, life feels like one long chore without the high points that should be there to make up for them. Although the normal pain from my PRMS may not be what is waking me, it is eating away at me when I am awake, every twinge now seems to be felt and no position is comfortable for any more than a few seconds, I can’t escape it any longer as sleep was my escape.

I spoke the other week of being on a spiral with all the problems that my bowels were causing, well this is the next layer of that spiral, this is the layer that pulling my general life quality down as well. Constantly feeling as though I need sleep, is something that makes me just like everyone else, that little bit more short tempered, I don’t like snapping at Adam and although he understands, it doesn’t make it any easier, but I am not just short tempered with him, I am now short-tempered and impatient with myself. So why don’t I just go to bed right now, simple, I have to at least stick as closely as I can to my routine and to get everything done, if I went to bed now, well I would just be building up the problems for tomorrow as I wouldn’t sleep well tonight. Life right now feels far too far over into the lose, lose side and I don’t like it. I am too tired to want to do anything but desperate to get it all done, not wanting to eat, but having to or I know my bowels will stop completely again, I want to sleep but I know it would just make things worse. Right now if the doctor said that he was going to give me a stoma, well I think I would take it, as long as they could reverse it in a week, during which time I would ask them to knock me out and keep the world a million miles away from me so that I can just sleep.

When I was a Mum with tiny children, I could weeks on just a couple of hours sleep a night. When I was a DJ, well I did just the same for the time I was on the Radio and gigging live, the radio station being a two-hour journey from home and my evening venus. Even when I was in my last job, there were many months when I got no more than 4-5 hours sleep, due to the levels of work I was having to do at home, just to keep up. Now I can’t manage with a disturbed 13 hours per day, even when I do get a couple of good nights every few days. Sleep is one of those things that people just don’t realise how important it actually can be, it’s such a simple thing but it is also such an important thing as well.

Read my blog from 2 years ago today – 25/03/13 – The visit > http://bit.ly/WQm3bE

Everything is in shortened versions today as Teressa and her fiance will be here today so that Adam and I can meet John before the wedding. Adam miss read her Facebook on Saturday and gained the impression that they wouldn’t be driving up until Sunday rather than on the planned Saturday, so after I went to bed he thought he would take all the covers off the settees and wash them. The phone range at around 10:30 yesterday………

Make your choice

Sometimes I simply hate my memory, I had a perfect start for this post thought out last night, then I spotted a comment I needed to answer and the whole thing has vanished. I know that most people who write make notes when ideas come to them, but for me that would never work, if I were to sit up in bed and write something down, I would never get to sleep, the real point of being there. I guess that just means that I have to live with it, but I can’t help wondering just how many wonderful posts since I started this project have been lost for ever. There have been and always will be days when I sit here ready to write and my brain just lets me down, I guess that means they will increase not decrease, but one thing I have learned is if I start to write, something always will appear and inspiration will flow. One of the odd things that writing has taught me is just how different people reading it, will find different thing within, often not what I wrote at all, probably because we always reflect our own lives onto everything.

I had a tweet yesterday from someone who clearly had read a tweet and followed the link coming straight onto a post, from the last couple of days, a pitfall for anyone coming new to my blog as the past is missing to them, but they made me think about a post from a long time ago in which I listed all my condition’s at that point in time, I made a list of 12 separately diagnosed conditions, which clearly don’t include my emphysema and gallstones, the most resent additions. When I made the list I did so more as an exercise, just to see what was really going on inside me, as I had recently become aware of others like me with more than just a couple and I wanted to see just what was there. I know all to well that I am not alone with such a list, many many people have multiple health issues and many with more than I have, but that was what I found myself thinking about, just how many I might have by the time I die, other than the one I die from and bizarrely what the longest list someone has ever had and still been alive. Let me say right now before some fickle finger of fate, decides to see that as an invitation, I don’t want that world record, in fact I don’t want even one more thank you, I have enough. It all of course depends on what you consider a medical condition and not worth mentioning, for example I didn’t include my tinnitus, it is extremely annoying at times, but for me isn’t bad enough to drive me mad as it does some people. These days thanks to the inventing of a group all term of COPD, I now take my asthma, chronic bronchitis and emphysema and group them under those 4 letters, but they are different conditions. The thing about all these different conditions, as it is all relevant to the individual, I personally as regular readers know only really talk about my PRMS and COPD as to me they are the conditions that effect me the most, the rest are there and they make themselves know at times, but I mainly dismiss them these days.

I have never despite having had MS for 30 years now and the rest appearing along route, not been the type of person who let’s any of it get to me, I still find it really hard to believe just how ill I am and I still get stupid ideas about somehow managing to work and get back to the life I had, you never stop dreaming about that. I always thought that I would be the person who worked to my dying day, not that I though I would die young, I just never thought that I would ever retire, I was going to work forever, being carried away from my desk to a hearse. For me it doesn’t matter how bad things look even when they are there in front of me in black and white, my personal list doesn’t matter, what matters is enjoying life and that is something I find incredibly easy as long as the pain stays at it well controlled level. I think if we all sat thinking about nothing other than where our next breath was to come from, well we would all stop living very quickly. I know it isn’t easy for those who don’t have something like PRMS to understand, but in the early stages life isn’t that much different, yes there are spasms and a constant back ground pain to everything you do, but I lived through it without medication or help from anyone. Once they worked out 20 years on what was wrong and what was happening they slowly got the medication right, apart from a 4 year spell when it was hellish, but even then life was still manageable. Yes there is horrendous fatigue, exhaustion and pain, frequently all together and yes these days I am rarely without pain from my diaphragm, I feel sick and find food a problem, but there are windows in everyday were life is still great and they are the hours or minutes I hold onto. To some people I know that wouldn’t be enough for them, but I focus on those good spells, I can deal with the pain, I have no choice, I can deal with the body that doesn’t do half the things I want it to, well not even a quarter, but whose counting, it’s my body and I have to live with it, not despite it.

Daily I pour out here what is happening to me, the good, the bad and the funny when they occur, I also pour out the things I am struggling with, struggling to settle in my mind, like the fact there is less and less of it to settle anything into. I write about my fears, disappointments and my future, I pour out here what it is to be human, as strangely enough I do still have that on my list of things to do as well. This is to me the place where rather publicly I open up my brain to examination, as Adam once said this is my personal psychiatrist as if I bottled all this up, well he’s quite right I wouldn’t be as happy as I am and happiness is essential. If you are going to survive chronic illness you are going to have to go through daily such a complex set of feelings, not just the emotional sort, that you have to find a survival plan that works for you. I know that I am so lucky to have Adam, but he is normally with me for just a few hours a day, that leaves a lot of time for me to spend alone, a lot of thought and a lot of emotions, most land up here and by the time we are together again, well we can then enjoy our time together without me feeling sorry for myself and him having to listen to the mess I call my brain.

All of us have to make a choice when our bodies start falling apart, I made the choice to keep going, I might not be able to work to the end of my life, but I can live to it.

 

Please read my blog from 2 years ago today – 15/11/12 – UK Roulette

I warn you know that some of you will disagree with what I am writing today, but this has to be here like all the rest of it as it is a true factor of my life and what MS has made me and others have to think about.

Years ago when I was first diagnosed with MS and I was facing an unknown future with a progressive illness, Adam and I……

What comes next

I knew this morning as I was making my porridge that I wasn’t going to be able to finish it, but I made it anyway just as I always do, by the time it was ready, I didn’t want to eat any of it. I sat here staring at a plate half filled with hot porridge and had to make myself eat every single mouthful, making yourself eat, as everyone knows is a hard thing to do, your body is screaming at you not to, you don’t need this and it isn’t welcome, but you eat each mouthful, fighting it down into your stomach, until the final warning comes and you have no choice but to stop. I had managed three-quarter’s of it, without enjoying any of it. I don’t understand what has triggered this appetite close down, but after more than a week of it, I now realise that it has no intentions of letting go of me. I thought a couple of days ago that it might just be my body reminding me that I hadn’t taken my weekly laxative, so I took it that night, as luck had it, it didn’t actually start to work until late on and didn’t complete until around 2 am, once again a disturbed night, but with a purpose this time and the expectation that I would feel more myself in the morning. I don’t, I feel really quite awful today.

I really don’t know what is going on all I know is there is something wrong with me and it has been building and building over the last few weeks. It all seems to go back to the day that I found myself totally unable to pass anything from my bowel, which as regular readers will know I have discussed with my GP, but he didn’t seem that concerned about it. From that day right through to today, everything I can think of has slowly been getting worse and I have been equally been feeling slowly worse as well. I have had days here and there where I thought that things were settling down, but they just don’t last and when they end I feel worse than I did before. I have no doubt that my MS is at the root of the issues with my bowels, it has been investigated in the recent past and nothing was found, other than the fact it just isn’t working as it should as the nerves aren’t stimulating anything any longer, not much of a surprise as it was something I had been telling them for months. I often wonder just how much doctors actually listen to what we are telling them, or if they just latch onto words here and there and miss the rest out. The result is that we go home and continue to get worse because they just haven’t picked up on the clues that were there, before they become a major issue. It has left me wondering what I should do, do I call the doctor and say what, that I am feeling wrong, that I have no appetite and that my bowels are still not clearing, as after being woken twice last night, I still don’t feel it is clear. Do I mention again, the increase of the spasms in my rib cage that compress my lungs, or the fact I just want to sleep more and more? What bits are important, is the increase in my spasms in my arms and my legs, or the recent arrival of a new pain in my chest, one that takes my breath away and leaves me not sure of where it came from or why? It could be the nausea or the constant feeling of my diaphragm being tight and solid, or it could be the pains in my side and the increase of the bruising along the rib line under my right breast, or the series of neuralgia attacks in my brain. I could keep going listing and listing but I don’t have the slightest idea what is important and what’s not, as most of it, are just part of what it means to live in my body and nothing can be done about that, but for all I know what I call normal might just be the most important point and I am the one that has missed it.

That is always the problem when you live with chronic poor health and a list of already diagnosed conditions, everything becomes a mixed mist that finding your way through and spotting the true reason and the true symptom that is at fault, is almost impossible. It wouldn’t surprise me if those of us in my position are actually living with ticking time bomb that we don’t tell anyone about, just because we think that it part of what we should expect. It used to surprise me that so many of us with chronic illness didn’t just have one, we have a collection or a gang as I prefer to call them. When you think about it, it isn’t that surprising, as I bet like me they actually already had a gang before the main and most devastating of them was even thought of or found. For years I was sent to this doctor or that, some found nothing, others found something be it IBS, osteoarthritis, asthma or Fibro, the lists kept growing and I was just lucky when by chance they found my MS as they weren’t even looking for it. So most of us live with our own personal gang and the worst thing you can do is put yourself in the hands of the specialist as I did 2 years ago as they will find something new, like gallstones, something else I didn’t really need and had no idea where even there.

Clearly I used to be happy to put myself in the hands of the specialist as I used to have this strange belief that whatever they found they would be able to fix, the truth, the real truth is they can’t fix any of the conditions I have and I guess the majority of us have. I’m not so keen these days, surprisingly I really don’t need my gang to get any bigger, these days I would just rather not know as it achieves nothing other than more pressure to live with. Being told I have COPD did nothing for me, it just gave me another name tag and another source that I could partially blame for what was happening, but the main issues is as always my PRMS. After several weeks of feeling ill, not the ill I have lived my life with, but another ill on top, I am at a loss of what I can do next, or even who to turn to or do I even really want to. I don’t want to feel like this, but what are the real options and the real outcomes? I have several progressive conditions, I know what that means, but just like I was told years ago that there was nothing wrong with me, I know that whatever is happening now isn’t a progression, something is new is happening and it just doesn’t seem to want to settle down and leave me alone. I thought once, that once I had the final diagnosis, the biggie and the one that had made my life so difficult for such a long time that I would be fixed and free to live, the horrid truth is, it just keeps getting worse.

I am under no delusions of what my health means and where it is eventually going to end, but I’m not ready to be run over yet, all I want is to feel well, I can live happily with the pain and all the side effects of my illness and my medications, but it’s a fact I already eat very little, probably not enough for other parts of my health, I can’t afford to eat less, yet I am slowly losing the ability to not just eat more, but just to eat. I don’t want to wake up every morning feeling like I want to throw up, or wanting to eat and trying just to find that a tiny amount makes me again feel sick. It seems that no matter what I do in life, there is a line of fate that I found somewhere along the line that says “Nothing is every going to be easy, everything will be a battle, but you can’t just give in, so get up and deal with it.” For the first time, it is failing me as I just don’t know how to deal with it right now, I guess like everything else, the answer will appear.

 

Please read my blog from 2 years ago today – 29/10/12 – Bringing speech to mind

Yesterday reminded me that is a simple thing that would make most people angry can upset a lot more than my mood. The whole day was simply a spiral downwards of pain and memory problems. I had noticed over the last few weeks that my word memory when talking had been growing in its gaps, I have found…..