Finding our balance

It was clear yesterday that Adam had been playing catch up with my blog. I have for a long time worked on a safe theory of not telling Adam about things when they happen. If I do, he goes into a panic mode and spends the next hours jumping at every tiny flinch or twitch. If I don’t, then he reads about it least 24 hours later or at least a point far enough from the event for him to see that I am not about to roll over and die and that no real damage has been done. From nowhere last night, he started questioning me about the blank that appeared in my brain when talking to Jake last Tuesday. Out of all the things I had written about in the past week, this was the event he had pickup on and was clearly still playing on his mind, no matter how far past that point in time that we had travelled. I guess we all have things that worry us and to be honest, I had totally forgotten about it until he mentioned it. I had like all the other odd things in my life, just chalked it up as the first. That doesn’t mean I am expecting it to happen again, just like my leg going on Saturday, it started as a first long ago, now it’s a concern.

When you live with a list of serious conditions, the odds on your body doing something to you that a healthy person would find odd in just a single day, is high. I am so used to finding myself wondering either what was that, why did it do that, or trying to remember if I have felt that before. My body is a mass of odd. If it wasn’t I think I would be stunned, I actually can’t remember what it is like to live in a normal body, rather dull I would think. Joking aside, my body really is a mass of odd. I don’t think I could find an area that hasn’t produced a strange feeling, a peculiar sensation or an actual pain from an ache upwards. A muscle that hasn’t felt a spasm, a twitch or weakness beyond a kitten. Or a nerve that hasn’t learnt to fire off messages that are nothing but complete lies. Maybe, yes, I am complacent and dismissive about it, but who wouldn’t be. Then there are occasions where something is so marked, so outstanding, that I can’t help but not just chalk it up as something new, but I do find myself afterwards just a little concerned. I admit that is the case with last Tuesday. Adams mentioning it was expected, I knew that just like I was at the time, once read he would know it was beyond anything that normally happens and would worry. We had one of those odd conversations, which are probably universal with couples when one has a chronic condition. Adam clearly wanted me to know he had read it, his tone of voice and the way it began with a long “So”, said he wasn’t really happy I hadn’t told him that day. I spoke in a bright, but matter of fact way, putting in the side note of ‘don’t be silly, it was something and nothing, not worth talking about.’ But I also echoed his concern, just to show that I understood how he felt. Our words didn’t matter at all, it was all in our body language and all in your voices. Both of us making our point and both of us equally saying this is something to be noted and not ignored.

It can be hard sometimes being chronically ill, not because of what it does to us, but because we know that in many ways it is our partner that takes the brunt of it. I don’t deliberately hide things from him, writing this should be evidence enough. I would have to be totally nuts if I ever thought that he wouldn’t read it. I don’t tell him everything at the time, partly as I want him to see that I am fine as I said, but also because if we talked about it all the time, it would become oppressive and take over both our lives in a way that I couldn’t stand. Being ill all the time is draining. We have so little time together, that the last thing I want to do is sit there talking about nothing other than the very thing that keeps us apart. I can’t hide everything from him, any more than I would want to, that would be totally disrespectful, but I do want to hide enough that we can have some semblance of normality. The time we have together can never be what either of us would truly call normal for us. My health stole 90% of our normality, but what is left is precious and means the world to me.

Just as much as Adam keeps telling me, that it is his job to look after me, I equally have a role to play, to protect him from unrequired worry. I think ever single person with chronic illness wants to do that. We can’t stop our partners, carers or families from worrying, even if we never let them see a single thing that happened for a whole month, they would still worry through every single day of it. Humans are like that. We also go out of our way to protect those we love and I can’t help being human. I hate what my health has done to me, I hate even more what it has done to Adam. It’s my health, my body and my problem, it just doesn’t feel fair that it can reach out and tear him apart as well. The worse my health is getting and more it feels as though I am hurtling towards a cliff, the more I hate it. I hate the facts and I hate the possibilities even more. I might be a good actress these days, but no matter how much I act, I can’t act well enough to hide it from myself. When you have been with someone for 17 years, trust me if you can’t hide it from yourself, you probably can’t hide it from them.

My health is a scary thing. It’s scary to me and it’s scary to Adam. If I could find a way of changing that, I would give up anything I can think of. It’s not fair, it’s just so unfair that anyone other than I should feel anything about my health other than me. My prognosis isn’t good, our prognosis still seems bright and if we both hold onto that, well after everything is said and done, it is something worth holding on to.

Please read my post from two years ago – 26/07/2013 – A simple thing called happinessĀ 

I have been told over and over throughout my life that I set myself up for people to turn on me, it always comes out of the blue and for what I see no reason at all. I have also been told just how I do it, but does that stop me from a belief in the blanket truth and…

Teach me before it’s too late

I am sat on my not used for a very long time blow up cushion. After four days of taking the laxative liquid that my doctor prescribed to work with the Lactulose nothing had happened, apart from a very disturbed nights sleep where I kept waking with the pain of things moving but going nowhere near where I wanted it to go. I even woke up pouring with sweat and feeling terrible, but despite it all nothing other than that I could feel it all sitting low inside me, so I decided to attack it with a suppository, bad move! Well not totally true, it did get things moving, but it also started a run of spasms in a place I haven’t felt them for quite a while now. In the past it has subsided in a few minutes like most spasms, but this one, well it just doesn’t want to let go at all. The pain is so strong that it is impossible to sit down without the aid of my cushion, actually that isn’t totally true, sitting on the loo is wonderful as it puts no pressure on the muscles in spasm at all. Sitting when it feels like someone has grabbed all of your tail-end with a large set of pincers, then twisting them and refuses to let go, is not my idea of comfort, unsurprisingly I am just waiting for the Morphine to kick in. It is one of the few spasms that just doesn’t seem to like most to break by applying pressure, logic says that sitting would be the best thing possible, but the second I try it, I am on my feet again. I can only guess that it is actually deep inside me and not as close to the surface as it feels, when your insides go into a tight spasm, it can be extremely difficult to deal with them, it’s second only to on my list of horrid spasm to those in my diaphragm and intercostal muscles and only lower on the list as it doesn’t happen so often. It can be easy to fall into the false situation of thinking that spasms only happen in the muscles we know exist and use daily with knowledge, where ever there is a muscle or a nerve, PRMS will find it and play with it until it gets fed up and moves on.

Adam came home from college and went out almost straight away as my prescriptions had arrived from the doctor, so he headed out to the chemist to get the final parts of the delivery system set up. As we thought, all we have to do is phone them and let them know that I have an ad-hoc prescription waiting to be picked up and they will arrange the rest of it, but I did once again manage to get myself wound up about one small silly point. When Adam handed over the prescriptions, he was told that they would be delivered on Monday and if they found anything needed ordering they would order it in them, delivering it when it arrived. I don’t know why, but I hadn’t thought about there being no deliveries at the weekend and for the life of me, I couldn’t understand why they would be waiting until Monday to order anything that they didn’t have and it was a point that I couldn’t let go off. When my mind locks on to something, it seems to take a long time for it to be willing to let go of it again, it wasn’t Adams fault that he didn’t think about questioning that point, it just didn’t occur to him as important, but every chemist I have ever dealt with orders drugs in the second they get the prescription. It put this huge doubt into my mind about the whole thing and I couldn’t stop myself from going on about it as though it was his fault. Once I realised, I apologised as I already knew that he was somewhat wound up about something else and all I was doing once again was piling pressure on him for something he had no control over. Luckily, the chemist also phoned us to question one of the items that they thought didn’t look quite right, they were correct and it put a lot more faith on my part in their ability to live up to the service they were offering. In the last few weeks, I have been doing exactly the same thing over and over again about all sort of things. Clearly, as I keep find myself writing about different instances of this, it is something that I am truly sorry for doing and truly unable to do anything about at the second it starts. I have been racking my brain, trying to find out just what is causing my outbursts as honestly, they don’t normally happen this often. All I can come up with is that in the past few months, our lives have been nothing like normal, it has been a constant change and upheaval. It’s not just my health, we have had to deal with and buy a new fridge, TV, skybox and the suite recovered, this means a trail of shopping around, deliveries, house upheaval and the normal stress that goes along with all of that. Also, Adam has had a lot of time off so far this year as he had to use up his holidays before the end of April, which again has thrown routines out and confusion on my part as to where he is and what he is doing. We are also still working on sorting out all the that happened at the end of January, nothing this year has been normal and thanks to my pain levels being raised by my lack of bowel action, I haven’t been getting my full nights sleep every night now for months. I honestly think that all that is happening right now is my brain screaming for peace, to be allowed to just veg out at the back of my skull and not be used again for a while. Unfortunately, that isn’t going to happen anytime soon, well at least not until we have been to see the doctors in the Gastrology department again.

At times, it is easy to forget just what my body is going through and how one little change can put me into a tailspin, all of the above is enough to send me not just spinning but could have easily sent me into the biggest crash I have ever had. I know I am hard on myself at times, but to me there is no excuse, brain damage or not, to put anyone through the third degree just because their brain doesn’t work the same way as yours. Adam knows I don’t do it on purpose, that it is all too often my pain talking and my brain failing to engage as it should, he tells me over and over not to say sorry for it, but right now, that is all I can do, I just fear for what the future may hold when I don’t know later what I have said and how I said it. I have seen in plays and documentaries on Dementia, Parkinsons and Alzheimers people who either say the most incredibly hurtful things without knowing they have or out of frustration start to hit out, I fear that either might be our future, but I don’t have the slightest idea how to avoid it. I just wish there was some sort of training that we could both gain from that would help us deal with what is happening today and what might happen in the future as I don’t want to keep hurting him as I already do and I definitely don’t want to hurt him in the future in any way either.

No one teaches us how to deal with being ill, far less how to deal with someone or even ourselves when our health has made us totally irrational and unreachable at that moment. I know there are some people who don’t understand how I manage, how I stay so positive or even how I have accepted what is happening to me, all of that I have found easy. What I don’t find it easy is accepting a future that means not only the loss of all that, but also the loss of me, without there being some kind of way of bringing me back and stopping me from hurting mentally or physically, the person who I love.

Read my blog from 2 years ago today – 14/03/13 – Relationships with Love >

Having to work in a different order today as I don’t know when the ambulance will be, it could be any time after 11am which will cut my day right through the middle. So it has to be writing first today and fit the rest in where I can. I have done what I was asked to and had a lighter breakfast than normal and…..

It’s time for change

I woke last night once again with intense pain in my back, this time it was so bad that I had to reach for my booster pills, it’s the first time that back pain has made me do such a thing. I know that it is stupid and that they were prescribed for dealing with pain, but I have them linked so tightly to my PRMS and COPD, that to take them for anything else, well it just doesn’t feel right. I think I have taken them twice now due to the pain in my stomach and both times I have gone down with a huge spoonful of guilt. I know that is madness and that pain is pain, but it’s just me and I can’t help it, something to do with the way I was brought up I suppose. I sat in the kitchen for a few minutes and had a cigarette, not just because of the pain as I think I was actually woken by the fact I had thrown the covers off myself and I was freezing. It wasn’t until I tried to move that I discovered the pain, but by putting on two dressing gowns and moving around a little, well I knew it would warm me up quicker. Last night wasn’t the first time this happened, but when I woke I was also quickly aware of flashing lights behind my eyelids and white noise along with a sharp squeal, far worse than the tinnitus I have lived with for years. I didn’t have a headache or anything even similar, just this terrible noise and the lights which I couldn’t just see, but actually felt every flash as it appeared. In the last few months, this has been happening more and more for absolutely no reason that I can think of, the only thing that is always the same is, I am in bed. I honestly can’t think what it is about lying down, but my body seems to be trying harder and harder to make it as unpleasant as possible, the only good thing about the lights and noise is they pass quite quickly once I am up again.

It can really feel as time when you have a list of illnesses like I do that your body is on one long conspiracy trip to get you, I honestly wish I knew what I have done to it, for it to be so determined. Joking aside, I do understand those people who feel that when it comes to their health that they just can’t win. It’s not as though other than smoking, I have ever really mistreated my body, in fact I think I probably worked harder than most at staying fitter and younger than most women my age. I wasn’t bombarded like our current generation about eating well and living well, I just somehow had it all written in my brain, that I had to keep fit and I had to do everything I could to maintain what I had. In some ways, I know it had to do with not being believed that I was ill for so many years, it was kind of thrown back at me as my responsibility to cure myself. For many years I was a vegetarian, really odd in the late 70’s and early 80’s, it didn’t come just from wanting to be healthy, it had a lot to do with the fact that I wasn’t that fussed about the stuff, nor did I feel that great when I ate a lot of it. I taught myself a lot about nutrition and the right things to eat to maintain health, whilst still living what most would call a normal life, not by going all green or hippy as it was seen then, neither exactly the suitable image for a Royal Navy officers wife. Throughout most of my 20’s and all of my 30’s, I took the time to stay out of the sun, so that I didn’t damage my skin and because it made me feel ill. I spent almost my entire spare time exercising and generally keeping myself fit, none of it seemed to stop me from those terrible spells of being in pain and fatigued beyond how I was the rest of the time, no matter how much exercise I had been doing. Finding that your body has all that time been falling to pieces and all your hard work was a total waste of time as you are in reality even iller than you once thought possible, is really hard to get your head around. If anyone was going to live a long healthy life, then surely it should have been me.

I remember reading once about the man who was behind the jogging craze actually died of a heart attack whilst jogging and yes, I did laugh, but my laughter was a mix of bad taste and pure understanding. When it comes to chronic illness, it doesn’t seem to matter how fit you are, how strictly you stick to a regime of good food and fitness, if it is going to be your bad luck to have it, there is nothing you can do. Some chronic illnesses, yes, can be affected by being healthy, but the majority can’t and that is one of the things that I think too many just don’t understand. One of the constant questions that I remember being asked was “what caused it”, nothing, nothing causes any of them that I have, other than the Emphysema part of my COPD, that’s down to my smoking, I know that, but that was a calculated risk that I lost on. As the doctor said, even if I didn’t smoke, my PRMS is as likely to shut my lungs down as my Emphysema is, Any way, I digress, the point is that most people believe and treat you as though all of what is wrong with you, has to be your fault somehow and can be almost as cruel as the conditions, in the way they look at you and speak to you. Almost as bad as them, are the ones who constantly tell you about people they know who have what they believe to be the same condition, but can manage perfectly well. No matter what you say they seem to have no understanding that the two conditions although within the same family, are a million miles apart, as they say “A little learning is a dangerous thing”.

I believe firmly, that these are all the reasons why those of us who are ill, speak freely about their conditions to anyone who will listen, don’t push it down their throats, but help them to understand just what is happening to them. I heard the other day about a couple of people who were forced out of their jobs, due to their health, their conditions wouldn’t have affected their work in any way, it was just the narrow minds of their employer. I have already written about the similar attempt made by one director in the company I worked for, it doesn’t matter what the law says to some people, what matters is what they think they know and I believe it is up to every single one of us with any conditions from Asthma to Cancer, to make the path ahead for those who follow us and for ourselves, just that bit easier.


Please read my blog from 2 years ago today – 09/02/13 – A plan from the day after

I suppose we all do it, go to the Doctor and hear whatever it is they want to tell us, then go home saying well that’s OK. We then proceed to build up a ring of OK around ourselves, luckily I spotted it yesterday afternoon while I was trying to sleep. That in itself told me it wasn’t OK……

It should be simple

Two days to Christmas and the world has gone quieter on line than I have seen it for a year. It seems that the majority of people in this world are too busy running around the world chasing all the things that they believe essential to make the day perfect. It took me 50 years to realise that the things don’t make Christmas, oh they make us feel good and brighten our homes and cities, but it is never the things that make Christmas and it is definitely not the exhaustion, stress or panic so many put themselves through. Our Christmas, complete or not is due to arrive this morning in the back of an ASDA wagon. It took me five days to complete my order, not that it is huge or anything, it was because of my terrible memory. I actually started 4 weeks ago by simply making sure I had a deliver slot booked and held for me by selecting my chosen day and time and checking through a carton of cigarettes, then totally forgot about it. Last weekend when I started to sort the whole thing out, followed by 4 more amendments of the things I had forgotten or changed my mind on and with no effort or extra cost. So when the doorbell goes, I will know what we have in the house for Christmas and exactly what we will be eating on what day, well there are sure to be some substitutes, but it was last night that made me totally not care what arrived or not. I had spent the afternoon watching the news channel covering the horrendous news about the six people killed in the city centre when a bin lorry ploughed into Christmas shoppers. It was horrendous that people who were out gathering their bits and pieces to make their celebrations what they wanted them to be, had died just because they were walking down that road at that second. I didn’t hear about it until I woke up from my nap and like many I listened to eye witnesses and watched the footage going out live of the aftermath as I went about my normal daily tasks. As terrible and as sad as it was, it wasn’t that that made me not care this year, it was when I heard in the evening that my son Christopher had been on the very same street as it happened and had witnessed the whole thing, fate was the only thing that saved him from being part of it, Christmas this year could have been very different.

Last night was actually a bit of an odd night all round, Adam and I sat and talked about things that had nothing to do with the TV for once, we talked about the things we never talk about, like money and our lives. I guess we are just the same as most couples, we don’t often talk about the things that are actually really important, the things that make us work as a couple. It’s odd how easy it becomes to just live around each other, I don’t mean that we love each other less as that never seems to change, what I mean is some subjects become the unspeakable’s the things we avoid, as discussion is too difficult. A few years after our marriage and after my diagnosis things went very wrong for us, I would go as far as to say that to me it felt as though one point going in different directions and money became an unspoken monster. From then on I actually avoided talking about money as it always caused arguments at worst and frosty silences at best, so to talk last night freely and on the same page, was actually wonderful. With Adams debts now cleared just a few months ago and my cutting down on my cig’s, well we actually are both on the positive side and it feels so good. I guess it was the breaking of that monster that let us continue to talk, as it really does feel like the third person in our marriage has finally moved out.

Talking always seems on the surface to be the easiest thing to do, but in reality, it is the hardest and often the most painful. When your emotional controls are shot and tears happen without any invitation, it also become something that I now think both of us avoid, me because I don’t want to spend another minute in floods of tears if I can avoid it and Adam because he doesn’t want to make me cry. There is something about tears, even when you know that they don’t mean what they do to all other people on the planet, they still somehow start to feel real to both of us, when they truly mean nothing. For me they also have this horrid side effect that I noticed a long time ago, once they start they pull with them a feeling of deep intense emotion with no root cause, that makes them flow even more. It is almost like the whole system has flipped as emotion should surly come first and worse still, just like sever pain leaves it shadow, so do tears and their emotional bomb, they are still returning with ease. My body is so mixed up at the minute that I don’t quite know what it is going to do next, I honestly feel as though I am in some kind of horrid fairground ride, as my symptoms are flying at me in some many different directions all leaving me feeling in rather a mess.

On the good side I have started to sort out a new daily plan and I am getting results, I am starting to free up time and that means I have more time to rest and time to start recovering and becoming myself again. I have high hopes for the next few weeks as things start to slot together again, but like everything else in life, time will tell.


Please read my blog from 2 years ago today – 23/12/12 – Lifes routineĀ 

A late night last night as I had to force myself to stay up and what the final of Strictly Come Dancing, well after watching for 3 months I wasn’t going to record and watch it today was I. I actually pushed myself last night as I started by eating too much, yes the Christmas menu has started. I had bought some great little…..