Sometimes in life all we ever want are the answers, I often find when I feel like that that the best thing to do is not look for the answer, but to look for a new question. I suppose the best example of that is the oldest one I know, don’t “Ask why me? Ask why not me?”, the first is impossible to answer, but the second is the answer. Like everyone when I was first diagnosed, I asked myself the first question a million times and I actually found a million different answers, I could find more reasons than I wanted to admit as to why it should be me, I was pulling myself to bits because there wasn’t a real answer other than I was being punished. The three years before my diagnosis had been probably the happiest of my life, I had for the first time found someone to love, who truly loved me back for me, not for what I could give them, or as a stop gap before moving on to someone who could give them more. It made no difference to Adam what I told him about my past and I found myself telling him more than I had told anyone, I didn’t feel I needed to keep secrets and when the last one had been laid bare, he still loved me. My past was filled with thing that I had learned to hide because of the reactions I had had from others, so I built up walls around them, never talking about them, even learning to lie about some, people who I had told in the past had walked away, because they just couldn’t handle it. But here I was with nothing to hide, everything laid out and nothing to feel ashamed of any longer, I had at last found a person who understood or at the very least tried to and our perfect world was being destroyed by my body. I felt as though I wasn’t allowed to be that happy and that my MS, was my punishment for even trying.

There is one good thing about having had a life filled with pain and things that most of us luckily never have to face, it makes you stronger, it teaches you to fight for your very survival and not to give up. So when I eventually asked the second question I found the answers far easier. Why not me? Well, I am a strong person, I have had the training and the experience to be able to handle this like everything else, I wasn’t going to be beaten by this any more than I had beaten by anything else. The first lead me nowhere, other than a reason to wallow in self-pity the second gave me the answers and the reason to move on.

A simple example that I am sure is one that most to some extent can relate to, as we have all found ourselves with some reason to ask that “Why me?” question at some point. One of the things that I have found about being ill and having time to think about everything that has ever happened or might ever happen is that in time the questions about yourself actually just get bigger not smaller. I suppose that if you have the time, you can look at yourself in ways you never thought of before and as a result, the questions can only keep growing. There is one huge disadvantage and that is of course that you can’t test out any theory that comes along as you can’t go out there or do anything about it. I know that I was never been exactly a cool calm and collected person when it comes to dealing with people who don’t learn as quickly as I do, or who don’t take instructions and carry them out without coming back to ask question after question, it didn’t really make me the best manager. Knowing my flaw now and believing that I have learned how to handle it better, is of no use now, although I think I would now be able to do a much better job, I have no opportunity to find out if I am right or wrong. That’s just one example, believe me, there is now a huge list of them, all the result of time to think.

There are some things though that never change, things that are written on our hearts or those engrained into our soles. It doesn’t matter how many times you twist the question, or what way, or side you look at it from the answers always remain the same. For some that means they are passionately against something or for something, they are the things in life that are as important to us as our lives and despite what we read, learn or see, our own personal opinion remains just as it was, not because we haven’t listened, but because we have and the argument didn’t stand up to our beliefs. Every few years there is an attempt to change the law in this country with regard to assisted suicide, whenever the discussion begins there is a lot of debate on TV which no matter how many times I hear it, I still believe that the law should be changed and that we should have the right to decide for ourselves just when our lives have reached a point when we don’t want to go on. Don’t worry, I don’t want to die today or even tomorrow, but the longer I live with this monster, the more passionate that I believe we are the ones who should have the power to say when enough is enough. As thing stands today, I will have to end my life long before I would want to, as I have to be in total control and able to take whatever drug it is without any help of any sort. There are so many things that could go wrong with that plan and so many variables that the chance of the desired outcome is actually slim, it is more likely that I would only make myself worse. If anyone helped me, they would be in danger of being charged with murder, I just couldn’t put anyone in that position. They keep saying that the law stands as they don’t want to put the vulnerable in danger when in fact they are missing the point, as the law stands right now, that is exactly what the law is doing.

I know now that I have as I have with many other things, missed the opportunity to do anything about the law and what it says. It is impossible for me to change it, just as it is for all those people we see on the news, fighting the system for their desired right to die. I know now that I should have stood up for what I believed in long ago, I have believed this for as long as I can remember and what did I do, nothing! Why did I do nothing, because I was too busy doing all the things that I thought were important at the time and I believed that I had more than enough time in the future to stand up for what I believed. I didn’t take the time back then to ask all the questions that I should have, if I had I might just have asked… What if I become ill? What if I don’t have the health to make all those speeches, to attend all those meetings? What if someone else doesn’t do it for me? What if I leave it too late?

All of us have that one thing we believe in passionately, most of us are too busy living our lives, just getting on with things, always believing others will do it for us, well maybe it’s time we all start asking more questions and stop sitting waiting for other to do it and started to do it for ourselves, while we can. So ask yourself a question now, follow it with another and another them do something about it before it is too late.


Please read my blog from 2 years ago today 30/04/12 – Sunlight from below 

I saw something yesterday evening that I don’t remember ever seeing before in my life, I was transfixed by it but it lasted less than a minute and unlike the new generation I didn’t have a camera stuck to my hand. I was watching ‘Antiques Roadshow’ when in the corner of my eye I saw a light, it was more of a glow than a light and it was so bizarre that it was transfixing. Living in a flat the view from my window is really that of the flats across the road, with gaps filled with greenery, then more houses. Nothing that isn’t on almost every street in every city throughout the world, so seeing what looked like was the guttering of the flat opposite flood lite from below, was odd. I had to stand up and go to the window to investigate. There were no floodlights? Every house and every…..

Breaking the monster

There is something very odd about reading your own words back, especially when they were written a couple of years ago, it is like looking at yourself through someone else’s eyes as you had totally forgotten every word of it, but it is still familiar. I don’t read all the posts linked at the bottom of each page, just glance through them normally, but reading how I described things that were relevant to me at the time, is enlightening. I realise just how we all change, even over such a short period of time as two years and even when you are in your 50’s, when you would expect the changes to have either stopped or slowed down at the very least. I know that every bit of information we add to our knowledge daily has to change us in some way, that is just logical, but the fact that it never ends seems to me not just amazing, but astounding. There are people who seem to never change at all, stuck totally with what they learned up to a set point in their lives and ignoring or denying any argument that might make their views wrong. I find it impossible to understand people like that, maybe because I have never accepted that there is just one version of right and one of wrong, there are millions of different angles that everything should be look  and considered from, each view changes when you allow for the one before, as they say, nothing is ever written in stone. Although I never had the opportunity, I think I would have been a total nightmare if I had ever sat on a jury, we would have been in deliberations forever, I would not have been able to resist pointing out and going through all the possibilities, before allowing myself to vote.

I know that the way I feel about my health has changed so much over the years, with only one constant, I can’t change what is happening to me. As I said yesterday adjusting never ends, but there is more to it than just adjusting, it is deeper than that. I have always said the first thing anyone has to do is to accept, you can’t do anything until you accept and know what is happening to you, the bit that changes there is the knowing, we all learn almost daily that bit more about our own bodies and through contact with others. A million view of the same subject, growing all the time and only you there to analyse what it means to your health and your life. Once you have a diagnosis you normally only see your neurologist once a year, I several years stopped seeing them at all. The last time I was there, I knew that I should have booked my next appointment before I left, but he didn’t give me the usual reminder, I took the opportunity to just not do it. In all honesty, I had had enough of wasting my time going there, I never came away with what I wanted, either a cure or at the very least some knowledge that would help me move on to the next stage, I usually left knowing nothing. 15 minutes of my telling him what I always seemed to be telling him and nothing, but him sitting there nodding his head and saying either nothing or very little, achieved what? I can nod myself and say little, I didn’t need someone else to do that for me.

Cutting him out of the loop has put me in what I think is a bit of a unique situation, as for years it has been me analysing my condition, even prescribing and following my own system of care for my condition. Reading back over the years has made me see just how far I have come on my own, from wondering about things in a vague way to fully understanding and knowing what they are and how their effect has changed and progressed. My medical record for the last two years are right here and in much more detail than any medical file ever has. I know that sometimes it can take me a long time to work some things out, but it has been my experience that it takes most of the doctors I have known even longer. I don’t claim to have all the answers, but I do know how things feel and how they affect my life, take last years constant round of medical tests, all started just because I was lost and needed more facts. The result was my being told what I knew, that there is something wrong with my lungs and that my MS is in on the deal. It took them three months, all they added was another couple of tags COPD, oh and the unexpected gallstones. I have now been living with a diaphragm in spasm for over a year, that is not right, but it is just the way it is, I have become used to it, the feeling of wearing a 2 inch wide band around me, somehow tighter at the front than the back, but always there, worse when I lie down than when I am sitting up. All the doctors did for me was to remove the fear I had, it isn’t going to kill me, yet.

Fear has been the only thing that doctors have actually really helped me with, other than giving me meds to help me deal with the pain. It is fear that gets to all of us, if nothing else doctors have mastered the art of brushing over the things that scare us. Not always because we believe them, but because we believe in the myth that if it was serious they would be doing something about it, despite the fact that experience tells me they can do very little about most things. Fear is the one thing that you have to be able to over come, if not you would literally scare yourself to death. I almost bet everyone has found themselves at some point lying in bed and suddenly feeling their heart thumping, then desperately trying to find their pulse just in case it suddenly stops or does something mad. That fear can run away with you, especially when you have a body that does thousand of mad things every day, out of the list of things you have to do to survive chronic illness, one of the major things is to conquer your fear, or it will kill you through stress if nothing else.

It is one of the things I have picked up on in my writing and that is my own fears have lessened over the last couple of years. I honestly think that writing has helped me with that one, it has allowed me to put them all into words, once written somehow they don’t have the same power or strength to hurt me. I can to some extent now sooth my own fears when something new happens, I can analyse them, match them to others and put them in there place on the scale of things that make up life. They haven’t all gone, waking this morning with a direct pain through my head that still hasn’t gone just spread out from its original lightning like path from the top of my skull to my new. As always it started that fear of is this a lesion forming, or a stroke, or an aneurysm, you always have to hold onto the simple the boring and the one most likely, which means I just have a headache. Break the fear and look at it logically and analytically and you will find the simple answer just waiting to be understood.


Please read my blog from 2 years ago today – 29/04/12 – A fighter, me, why? 

I have frequently heard and read in more recent months, that I am a fighter, a survive, courageous, a strong person and several others in the same line, which I personally find a little hard to accept. Firstly as they don’t sound to me, like me and secondly I don’t think I deserve such titles. We, I suppose, all never see what others see in us, as we each have an image in our minds, of exactly who we are, in body and mind. We all like to think that that is what other see, but over the years, I have discovered that other never see that person.

I as most when a teenager thought that everywhere I went, everyone saw me and everyone looked and remembered. I was an arrogant little pain in the butt who thought herself beautiful and…..


Every day I tell myself this is it, I have done it, at last I have found the way to get through the things I have to do each morning faster, every day I find myself here just at about the same time as I do every other day. Just like every other day, I am beating myself up about it. Why is it that no matter what happens in life we are always the ones hardest on ourselves, we are the ones who actually make our own lives tougher than they should be, just because we have stupid expectations of our own ability. Even now although I haven’t worked for years, there are nights when I dream that I am still in the office and that I am trying as I always did to keep all the plates spinning, despite no one expected me to do half of that which I did daily. I have even woken in a cold sweat and suddenly awake as I have been dreaming that the phone system was down and once again I was stood there staring at the banks of rigged components that made up the switch, not knowing exactly what to do, but biting the bullet and doing the only things I could think of, in the fear that I might kill it for ever, bringing the entire company to a stand still for days. I was never trained to do my job, I learnt as I went along something that I suppose sums up my life, I was never trained to do anything, I just did it. It is so often our own expectations that drive us on to do better, but you would think that there would be a point when you would actually start to be nice to yourself and to say well does it really matter, without snapping back, of course it does.

I am still waiting for the day when I will just accept the fact that I am ill and what I can, or can’t do is limited by that simple fact. Don’t get me wrong I do accept the fact I am ill, I fully understand what my condition can and has done so far, but for some reason I still just can’t fully grasp how limited I am. Despite all the years of adjustment, all the years of having to unlearn how to keep a home, do a job, be a wife and on and on, there is still this bit inside of me that wants to scream, I am not ill, I can do anything, just watch me. Totally nuts when the same person finds it hard just to get to and back from the toilet some days. It is almost as though intellectually I have accepted and moved on, but my sole just can’t. I don’t know how else to explain it or if everyone in my position feels exactly the same, that’s why I am writing it down, just in case there is someone reading who feels just the same way, well hello, your not alone.

In some ways those are the two hardest thing about illness, all the adjusting you have to do and that constant feeling that you are the only person who is going through what you are, because you haven’t met anyone you feel comfortable enough to ask about it and all that literature that fills the web, just doesn’t have the answers you are looking for. I remember regardless how many people there were around me, giving me advise and trying to help, there are always going to be bits of being ill that you are totally alone with. I could write a million words about adjusting and I bet that every person who reads them, looking for answers would find their main one missing, we all have that one thing that bothers us more than any other at that precise minute. Trust me, they really do change all the time and today’s trauma, will be totally forgotten in a weeks time as you will have found a new one.

Adjusting to any progressive chronic illness never ends, you have just got to grips with the fact that you can’t do one thing, when something happens and you have to learn again and again, the pattern just keeps going on. Just like pain, you think you are living with pain you will never get used to, but you do, as you get used to it you for a while will find you can do more before it reaches a point where you have to stop, but then it gets worse again. The progressions never end, pain rises, disability grows and you adjust with it all, always hoping that this is the point where it will stop getting worse, but it just keeps going. Sometimes it gets all to much and you don’t want to adjust any more, you don’t want to have to find yet another way of doing something, sometimes you just want it all to stop, not because you want to stop, but just because you want a break from it all. That voice inside is shouting I can do it and I am going to, it’s well meaning, but it isn’t practical to listen to it, as all you will do is exhaust yourself and make things worse.

I have adjusted from a truly active person both mentally and physically to someone who would just like to do the housework, or cook a meal, but I can’t. I am not stupid enough to think that my illness will stop here at this point, any more than it did when I hoped that giving into the wheelchair would mean my body could rest enough for me to continue at that level for ever. My adjustments have along way still to go and I kind of get the impression that they will never end, any more than any of us actually truly ever stop learning. Some adjustment will always be easier than others and some I guess will eventually be impossible for me to do alone, but as long as I can see the good in the changes I have to make, there then has to be a point on working on them.


Please read my blog from 2 years ago today – 28/04/12 – Brain fog or custard

I’m find it hard today to hold onto a thought for too long, this often happens but it is always a strange feeling. I have spoken about MS brain fog before but I haven’t tried to describe it before other than to say you forget things, well that is a long way from the full picture. Brain fog it may surprise you to know, doesn’t just effect your brain.

When I try to sit here and work out exactly how to explain it, it gets harder to explain by the minute. My whole head is engulfed as though it doesn’t end at the skin, there is a force field surrounding it hovering three or four inches from my actual skin and it is gently put pressure on my brain, in a fashion……

I survived

It is strange to look back and remember those hope we all had when we first set out on life for ourselves without the financial support of our families and no one sitting waiting for us to come home at the end of the day. For me well I had a short taste of about 18 months of being thrown out there, rather than launched when I was just 15. No matter how hard I think about it, the one thing I never felt was fear, nor did I ever feel there was the slightest possibility that I might just not make it. It wasn’t just the bravado of a teenager, but not making it, not having a life I would look back on and pat myself on the back for surviving with a touch of personal style, just wasn’t going to happen.

I didn’t get that true feeling of starting my adult life until I left my first husband, I was 27 then, but I felt like a teenager heading out for the first time, I had all those teenage years that I missed living the way that teenagers should live. I have always said I have already had two lives, from birth to my divorce and rebirth to today. Just like a teenager, I didn’t have the slightest plan for the next day, far less the next year or further on. No qualifications, no real work history other than temping before I married, meant work was just a case of whatever I could get, as long as it started tomorrow, that sounded good to me. I had so much to do, that work was just money and I did around the million parties, nightclubs and people I had to meet, explore and enjoy. I had not the slightest intention of even looking for someone to be my partner, at least not in the married sense, I just wanted freedom and fun. When I found by total accident the freedom of being a DJ, who wouldn’t be happy working 4 hours a day whilst taking home a full-time wage? But as you know I eventually settled down and built a career that took me through to my final working years.

Many of the scraps I got into, the bad times, the mad times and the wonderful ones are already written about, but not all yet. Most have been picked out and spoken about because they changed something in my life forever, set me off in another direction or made me think over where I was going, but there is one thing that has been constant throughout all of them and that is I have never had the slightest feeling that I was ever in true danger. Others looking in have worried for my safety but not me, some have even been surprised that I have actually managed to come out alive, but still I just haven’t been able to see what they were worried about, I always knew that I would survive. I don’t know why I have never felt true fear of anything, it doesn’t matter what has happened to me in my life, neither physical or mental abuse ever left me feeling that I wasn’t going to get through it and see another day, nothing ever left me feeling that my life was in danger, yes often my body was, but not my life. From somewhere inside I have always had this feeling there was still more to do, still life to be lived and even when last summer I was told that I had only 10 years to live, I still don’t actually feel that is the truth. Yes for a while I was shaken by it, who wouldn’t be, but now I don’t feel anything about it at all, as it just doesn’t sit right, it doesn’t slot into my life.

So why have I ran thrugh this potted history, well because it shows that I have lived a full life, not one that was pampered, easy or privileged, well not past the age of 12. I have many many times been in positions where most people might have thought they were dying or might not survive to the next day, but not once do I remember the fear that should have been there. I can’t help wondering if this lack of fear, this constant belief that I will be here tomorrow, which clearly has been proved right, has a lot to do with the way I have managed to remain positive despite my health. The things I have been through from childhood on, have proved to me that yes I can be hurt, I can be damaged physically, but I still go on. It doesn’t matter how much pain I was put through, how many times everything I had vanished, I always managed to rebuild, restart and reinvent my life, wiser, battered and bruised but stronger.

I wrote a post a while ago asking the question as to whether we are trained to be ill by our parent, just like that I also wonder if those who have lived through a series of life-changing events and survived are also the people who know how to survive illness and get on with it, rather than being pulled down by it. I know that some people are dangerous, people are the ones who hurt us and could very easily kill us and if they all failed, well why would I let something I can’t see destroy me now.

I often hear on TV about people who have committed horrific crimes, who have also come from dysfunctional families, with divorced parents, who have been physical, mental and sexual abuse, backgrounds that echo mine too closely at times for comfort and wonder why I didn’t disintegrate. How have I come out of it seeing and feeling all the negatives, but holding on the one important positives, I survived. Is that the only difference, or is there more? I survived and I am surviving, just as I always have, being chronically ill to me has been just one more thing that I have to deal with and for as long as possible survive. I know that time cap is there now, but as I said even that doesn’t fit, maybe that’s just because I can’t predict that far ahead, so it just somehow doesn’t feel real, but I guess the day will come when I know I am beaten but it isn’t today, that is for sure.


Please read my blog from 2 years ago today – 27/04/12 – Treatment, honey or not

Everyone with MS will tell you there is one common factor and that everyone has different symptoms. If you don’t have MS that simply sounds nuts, different symptoms surely mean different illnesses. That I am sure is one of the reasons why it is proving to be difficult to find a cause or cure.

Over all the years since my diagnosis, there have been glimmers of hope with new discoveries and so-called breakthroughs and all have either disappeared from discussion, as they are working their way through trials, or simply disappeared as they fail to show results. I suppose the one that there was the most publicity about was the possibility of using stem cells to repair the Myelin……

What’s in an hour

Adam spent all of yesterday with his Mother, although it was the day after he always spends one day with her around his birthday, so I had a quiet day spent just doing what I do online and yes finishing off the remains of the carryout. When will I learn? I am not in day two of not feeling well thanks to my stomachs dislike of normal food, I actually woke in the middle of the night because it was so painful, I rarely wake due to pain, so it must have been bad. I was in bed and well asleep when he made it home, he was still on the bus heading back when I spoke to him to say good night and of course snoring on the settee when I got up, so nothing unusual there then.

I have found myself trying to work out what the real impact on my life the amount of time I spend sleeping and why I am so determined to always be busy when I am awake. Each night I loose 11 hours, well not really, I suppose I loose if I am honest 7 hours, I used to sleep just 6 or less and I sleep every afternoon for between one and 2 hours, so let’s say I lose 9 hours a day. Imagine just what would happen to your life if you lost 9 hours of it every, single, day. What would have to go, not be done or not enjoyed just to be able to fit in what has to be done and that includes work. On the surface sleeping so much does sound like nothing of any importance, especially when you don’t have to work, but it is, it’s actually something really important, as I am sleeping away my only life.

It was sleep that forced me into cutting the number of days I went into the office, as just getting ready and going back and forward by taxi, meant that I had to loose 4 hours sleep, 4 hours that I really struggled with losing. Add into that the fatigue that was caused by that extra exertion and well it did far more damage than was made up by the contact with people and just seeing what was happening first hand rather than through my PC’s. Getting up and sitting here logged into the office systems and working, meant I was more awake and more able to carry out all of the things I had to do. It isn’t something we really think about, but exhaustion is extremely stressful and causes pain and headaches that we wouldn’t normally have, exhaustion causes mistakes, as your brain just doesn’t function fully and frustration levels rise continuously. It is something that we rarely think about because not many of us really ever try to function in that state. I think the only other time in my life that I knew what exhaustion really was, was when Teressa was tiny and thought screaming all night, every night was a fun thing to do. Most parents will remember that stage even if it only lasted a few weeks, but imagine feeling like that every day, for years, not days, regardless how much sleep you had.

At first, you adjust and you make time to sleep as much as you can, but even getting your full 8 hours just isn’t enough, so you start going to bed earlier and earlier until you have no life other than work, that was the point I stopped my daily jaunt to the office, but I was still tired, never really awake. Housework began to slip, as did my interest in the things I used to enjoy, as I just didn’t have the energy. I could no longer have a social life, or do anything at weekends as all I could think about and do was sleep. You would think that once I stopped working that it would have made a huge difference, that I would have had more energy, more get up and go, but I didn’t, what I had was more time to sleep and I have used it to do just that, but still I am always tired. I decided to draw the line at the point I started sleeping 11 hours each night and set up a routine of getting up at 7:30 just to keep some normality in my life. I still wake up every day wanting to sleep longer, just as I am when I go to bed I am extremely unsteady on my feet, my muscles are clamped and walking difficult. My body takes about an hour to wake up to the point I would say is my best of all the hours I am awake, but that’s still the real bummer, I never feel fully awake, I am always tired and always getting more tired as the day goes on.

So here I am with a whole 11 hours to my waking day, that is all I have, not a minute longer and I have to live every minute of it as I have so little to waste. Yes, I push myself and yes if I didn’t, well maybe I might feel that bit better but I don’t want to waste a second that I have, as I have less and less daily to waste. Those 10 years I was given to live last year are ticking away and I don’t want to spend all of them asleep. I can’t work but I can still be a productive member of the world and like most of the jobs I have found myself doing over the years, I sort of fell into this one without the intent to ever be here. Somehow I seem to be doing good out there and making other people feel better and want to make more of their lives and I feel privileged to be in this position. So there is no way I am just going to stop, to lie down on my bed and sleep. I don’t know what would happen if I went to bed tonight and I didn’t have my alarm set, I have no idea just how many hours I would sleep for or how many hours I would be left each day to do something useful, all I know is I don’t want to take any chances, so the alarm stays set.

I expect the time will come when I won’t be able to stay awake as many hours as I do now, it’s logical as it has slowly reduced year after year, but the thought of losing even just one more hour from any day, far less every day, right now just isn’t acceptable. It might just sound like one more hour asleep, but it is one less hour that I have to live, it doesn’t matter how you think of it, that is a cold hard fact. Technically sleep is still living, as is being in a coma, but it is only living to those around you, you yourself have no input, no interaction, and no growth, they are the dead hours in all of our lives, but normally the awake ones add up to more, I can’t get the physical hours back, but I can try to fill those I have with as much positive action as I possibly can and that is important to me, it’s my own personal definition of life.


Please read my blog from 2 years ago today – 26/04/12 – Finding myself

The past few days are still taking their toll on me as yesterday afternoon I slept for 4 hrs and I was in bed again by 10:30 last night. To be honest I will accept exhaustion any day before bad pain, at least when asleep I don’t feel anything, OK I know the argument that I don’t sleep as well because of the pain and that why I’m so tired, but I still don’t feel pain so who cares! I kind of like to see it as my body catching up on all the hours I lost when surrounded kids, (not just mine) and working jobs that expected 24hr work a day, whilst calling it just 8. It seems the older I get the more I realise that nearly everything in life is some sort of trade off and I often think that that is a lesson I wish I had been taught as a child along with cause and effect. I know, it’s OK, I’m not that……