How could she?

I opened an envelope yesterday that shattered something I have held onto for over 30 years, a promise I made to my son. I sat here with tears flowing down my face and an anger like none I have felt for years. Yet again, my Mother has screwed up my life, and I haven’t even seen her for 15 years. That woman has spent her entire life either judging me by rules no one would understand, or by doing things that make no sense. I had asked Adam to fetch from the chest by the TV, all my papers, which have all been stored in one large brown envelope. It contains everything about me, from my birth certificate, my scattered qualifications, right through to my divorce papers from my first marriage. Amongst them, I knew there was an envelope that contained the deeds to my son, Jefferys’ grave. I needed all the details so that I could finalise my plans for my own funeral. When Jeffery died, my Mother bought the plot for us, as we quite simply couldn’t afford to, when she did, she handed the papers to me and said that it was in my name, for our future use. I had no reason to ever look at it from then, until now. In fact, the only time I gave any thought to it was when I got divorced. My ex and I discussed it and as my Mother had paid for it, and I intended to be buried in Aberdeen with Jeffery, unlike my ex who had no other connection to the city, and with our joint belief that the grave was in my name, no we didn’t open the envelope and read them, well I logically took the deeds with me. When I opened the envelope yesterday, I couldn’t believe my eyes, what I saw there wasn’t my name, but my ex-husbands. There it was in black and white, the end to my promise, and my choice.

It took me several minutes to compose myself and to start thinking logically about it all. There had to be an answer, and I simply had to think it through rather than react. I phoned Aberdeen City Council, the people who issue the deeds. They confirmed what I thought, either he has to sign them over to me, or if he won’t, them to give me permission to have my ashes interned there and a small stone erected. Either way, he has to sign one of two forms, which are in the post to me now. I haven’t spoken to my ex since I tracked him and my daughter, who he had taken without my permission to Auckland in New Zealand to live. Clearly, we aren’t on the best of terms. By chance, they are now both back here in the UK, through very different routes. Despite what he did to Teressa over the years, she chose a few years ago to rebuild their relationship. I have done the only thing I can, I have asked her to talk to her Dad and hopefully get the papers signed over to me. On one level, I can see no reason why he shouldn’t, but on an another, I fear he will simply demand that I send the deeds to him. He knows very well how to be mentally cruel and although Teressa seems positive about the outcome, I can’t be so sure.

It is amazing how one small action, so many years ago could have such an impact. The more I stopped and really thought about it, the more I realised that my Mother, although divorced herself, put his name on it, not out of any misplaced trust, more out of traditional values. One that said, he was my husband for life. When she did it, she couldn’t see what the truth of our relationship was, or how it would end. It just annoys me that once again, she is managing to tear away at my life. Since I married Adam, she more or less cut me out of her life. We had some contact by phone for a few years, then when I became ill, it slowly tailed off. When she became ill, my brother never even told me, it was after months of hearing nothing, that I eventually made contact with him, to hear she was in the hospital, about to moved to a care home. Despite promising to keep me in the loop, it took until this Christmas, 2 years on, for me to even find out where she is. Clearly, I am not wanted as part of anything now, any more than I have been for the bulk of my life. I am fed up of being seen as her “duty”, rather than her daughter.

So now my plans are in the hands of Teressa, it will be up to her skills of persuasion for me to be able to carry out what I always believed was a foregone conclusion. It just shows you how one tiny action, taken many years before, can screw up your future. Oddly, I remember when I left my first husband, my Mother actually asked me if I had the deeds in my possession. Surely, that would have been the perfect opportunity to tell me what she had done. Just having something in your possession, isn’t enough in the eyes of the law, it’s down to true ownership, not possession, despite the nine tenth theory.

I could really have done without all of this. I was feeling bad enough before I opened that damned envelope. It is yet more proof that stress isn’t something that does anyone any good. On the good side, I also opened another envelope yesterday, well rather Adam did. I now have in my possession, my DNR papers, and these papers, do have my name on then and are signed and ratified by my doctor. Just as the old one that I had, it has a time limit of five years. The only thing that the law change has brought about, as far as I can see, is a standardised form, and the fact that it doesn’t need an outside witness, and that the form stays with me. I don’t know if it is normal, but Adam has agreed with me that it might be an idea when I am next at the hospital for an appointment with one of my consultants, that we ask about it being added to my hospital records. I know it’s a belt and braces approach, but I really have no desire for anyone to be bouncing up and down on my chest, or having high voltage electricity coursing through me, I’d rather go peacefully.

I think I had been awake today for less than ten minutes when I was again aware of being exhausted. This morning was the first time ever, that I actually struggled to pull myself round enough, to be able to switch off the alarm clock. I have been struggling all day long. Today, the worst pain is in my lungs. I don’t know what is going on, or why they are so painful, but I am aware of every breath. To be fair, it’s more of a constant ache, rather than what most would call true pain. My diaphragm, though, well that’s another story. I am more than aware of what all my muscles can do, when under the control of my PRMS, they really don’t have to show off. I guess this afternoon will find me back in bed, not that it does much good, but somehow, it’s hard to fight the theory that going to bed, makes you feel better. Where did that stupid idea come from in the first place, probably something else I owe to my Mother. It’s amazing how what we are taught as kids, stays with us.


Please read my blog from 2 years ago today – 06/02/2014 – A girls best friend

This week is disappearing at a speed I haven’t felt for quite a while and totally without any reason that I can think of. I always thought that time flew when you were busier than usual, but I’m not, just ticking……






The start of an idea

The shadow of the night before hung over much of yesterday, but I was determined to shake free of it and move forwards again. You can’t make yourself breath in a different way when either asleep or going to sleep, but you can when you’re awake. Well, some of the time. I tried to make a conscious effort to take more air in whenever I could, or whenever I felt I was slipping slightly. It’s one of those things that the I just can’t say if it worked or if it didn’t. You can’t measure what didn’t happen, without know if it would have if you didn’t intervene. What I do know is that the morning was harder than the afternoon, but in the morning I am busier and distraction is equal to sleep, you forget to do things. I did have total failures, spells where I was clearly on the edge just as I was the day before, caught in the feeling that here wasn’t where I was supposed to be. But just like yesterday they passed, did breathing deeper make a difference, who knows. Just taking more air into lungs sounds so simple, but when you have those tight bands around you, it’s a true struggle. We are all programmed into not causing ourselves pain, I don’t need to even try taking a deep breath, I know what it does, it hurts. Pushing against that isn’t easy, but I can take in more air than I would if I didn’t try. It appears that I have fallen into a pattern of underestimating the amount I can stretch those bands before they trigger true pain. The only problem is it takes concentration, any distraction, even the tiniest and I fall back into normality.

After my bad nights sleep, I fell into a deep sleep within seconds of lying down for my afternoon nap, just as I did when I went to bed last night. The bad part is both had something in common, I woke with a terrible headache. In fact, I still have the one from last night, something I have often had in the past month when I wake. If this was the first spell of nightmares/hallucinations, then I would be far more worried by this than I am, but it’s not. I have just four weeks until I see the consultant and unless something dramatically worse happens before then, I am sure that I can wait. My lungs do have a slight wheeze to them in the last few days and yes, I have been short of breath just moving around. Again, though, I have had many spells of that in the past few year, so it’s not exactly something to start sounding alarm bells over.

I still find it incredibly hard to know when, or when not, to start getting worried about the things that I live with, or even if there is any point in worrying about any of it. I always find myself caught in two minds about making a fuss about things. I know that I am far from the illest person out there, but I don’t know when compared to those in my peer group what is counted as a medical emergency. To me, a medical emergency is something that means you go to the hospital because they can do something about it. Like a heart attack, where they can get your heart going again, possibly do an operation to stop it happening again and you carry on with an improved quality of life and also an improved longevity compared to doing nothing. I don’t feel that I ever fall into those categories. When you are living with a series of conditions that interlink to make life hellish, all that no one can do anything about, where is that emergency point. A mild rise in one symptom isn’t an emergency if I hadn’t had that, let us call it a dream for now, if I hadn’t had that dream and those feelings. I wouldn’t have mentioned it at all. Shortness of breath and pain are everyday events. Feeling fuzzy, light-headed and waking with headaches are everyday events. There is no emergency. Even the fear that my brain isn’t getting enough oxygen all of the time isn’t an emergency, it’s a fear, one I have had for a while and I am still here and still myself.

The doctors can’t fix me, there is no operations, no medicine, and no treatment. Yes, if it’s proved to be a lack of oxygen, they can do something about that, but I doubt they want me in A&E when I have an appointment in a couple of weeks. There are so many isolated events and symptoms that I and others live with, that at the time feel like the end, but never are. Which ones are the real problems, the real emergencies? There is also one other factor that I am sure every single one of us who are caught in this progressive illness nightmare struggles with, is there really a point in running to the doctor every few minutes. The ticking clock in the background of my life isn’t ticking any slower. I know that this is going to sound wrong but is there a point in running back and forward trying to make it longer? I know that my prognosis isn’t pretty, I have always known that. When you get as far along the path as I have, the questions about the end of that path start to grow louder. I like most, have no desire for a long slow painful end. One where I would need to be nursed through every day, is something I don’t want. I always had this view of my life as being that person who worked right through to my last hours. Just like my grandfather did, he collapsed at work and died within a week. That to me is the way to go, not lying in bed for months maybe years. Sometimes the idea of totally losing my mind or a bout of pneumonia sounds like a gift.

As I said, I knew that would sound wrong and it does. I don’t want to die today or even tomorrow, I want to live, but the idea of a life that is out of my control holds none of the things that I see as living. It’s so wrong that the biggest thing ahead of me is totally our of my control. I know I still have a long time ahead of me in which to work this all out, but it’s something that plays on my mind. I don’t even know where to turn to get any of those answers I am looking for. I don’t even know what help and support is out there for when things get to the point where life is truly tough and truly heading off where I don’t want it to go. How do you plan the rest of your life when so much of it is already written and you can’t actually change that? What help and support is even out there to turn to? My experience so far is that there is really very little, and that was the experience of someone who was still reasonably fit and healthy. Housebound is a major barrier to getting help, as oddly all the help that I ever found set up for those who have a chronic illness, requires you to go to them. What when you can’t financially afford to get there? Or when you physically can’t manage to get to them? Well, so far that has come back with a brick wall. The answer, even from those who should know better, is if you can’t come to us, well we can’t help. Being a none driver and living like most on a budget, has meant that on many occasions long before I was housebound but was in a wheelchair, the little help that was out there, was out of my reach. Now being housebound means there is even less than there was before. It appears that care and support are more a question of what you can do for yourself, when it should be what we need from them.

So far I come up with only one thing that seems to be for sure, there is no right or wrong answer to any of it. You are the only person there is to pursue and seek out what little support there is and even then, you are mostly on your own. How do you find out the options on your care when your health is beyond what you can do for yourself? Who do you turn to when you need to start planning and preparing for what lies ahead of all of us? If you want to plan your will or even your funeral, you can do that with ease and no one bats and eyelid or thinks it’s strange. But if you want to start planning your death and your care for the months and years before, suddenly you are some kind of alien. I don’t want to leave it down to chance. I don’t want it to be that sudden horrid monster that appears and you are suddenly at the mercy of the system. I want to know what might happen in all the variables that lie ahead of me and just what they are. It might sound like a huge demand or even a morbid one to some, but I don’t really have a life to plan for. I have already done that. I just want to plan what comes after so that I am not faced with a nightmare that’s out of my control.

Please read my blog from 2 years ago – 04/08/2013 – 1 hour is changing my life 

Sometimes it take something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me………

A wake-up call

I found myself hanging off the back of the bedroom door. Something inside me was screaming, it was one of those moments where everything just suddenly felt too much and I needed to silently scream. I was just stood there with both hands grasped tightly to my dressing gown, with it taking as much of my weight as I dared to set free. All I wanted was to stay where I was my face buried in the soft velvet of my dressing gown, letting that tension escape. I suddenly realised that where I was, was just a little stupid. What if Adam wanted something from the bedroom, half hanging off the door wasn’t exactly a safe place to be, or one that I would be able to explain with ease, or without feeling rather stupid.

The day had started out without issue. I had written my blog, sent out all my tweets and spoken to Jake. Nothing unusual and nothing there to wind me up or steal my energy, a day like any other. I decided to spend my free time trying to find some new sites. Ones that actually had something to say to me, rather than the millions of sites which talk solely to those with Relapse Remitting MS. Read most sites and their truth is that we are all the same, going through a variation of the same thing. That is the first and biggest lie that they all tell. Have any of the three forms that start with the word Progressive, and you are on a totally different journey. To my total surprise, I found one. One with a twist which after my writing how I hate all that Adam has to go through because of my health, was actually fitting as it was written by a carer. It was so well written that I was blown away by it, as it painted perfectly the worst side of what a caregiver reality really is. I had been only able to imagine it before and what I read surprised me as my imagination hadn’t done that bad a job. Donna Steigleder husband is at a later stage of the disease than I am so it was also a picture of my future as well as Adams. Her post was so well written that I forgave her for missing out PRMS, there are so few off us that we are frequently forgotten, especially by the researchers, which explains why there are no treatments for us either.

In so many ways, I both needed and didn’t need to read her words. It hard for me to find the words as to how it feels to read your own future, well parts of it. Clearly there will be differences, but there will be a huge amount that we will share. I’m not stupid, I knew that much of what I read was ahead of us, including Adam feeling as desperate as Donna clearly does at times. Out of our two lives, it is still his that I fear for the most. I am sure that Donna didn’t hand that post to him to read when she felt like that. Or sat down and talked it all through with him, her clearly caring nature tells me that. I don’t want Adam to ever feel that he has to hide all that anger, remorse, pain, guilt, fear and most of all that feeling that somehow he might be failing both of us. Right now I am at the tail end of the scale of MS, somewhere in the later stages of stage 8. Stage 9 is still a way off, I don’t expect to be mainly bedbound anytime soon, but a bad flare could change that tomorrow. Having said that is spending 13 hours a day, partially bed bound? It’s a definition I find hard to work out, as to me you are either bed bound or not, how can you be mainly bedbound? To me, the stages are somewhat unbalanced, stage 8 is met once your life is substantially changed and you are using a wheelchair either full or part time. Seven stages to that point and only two to take you to death, to me, it doesn’t quite add up. I am at the point where yes Adam has to pick up and do the things I can no longer, but his actual caring for my needs is still very limited. As long as my health stays at this level, there is a normality to life that still remains. But I don’t think that either of us are quite prepared for just how much our lives will change as time goes on. It doesn’t matter how well you research your condition, how much you both read and talk, no one knows exactly how you will manage until the point that it actually happens.

I think reading Donna’s post yesterday was a little of a wake-up call. I have spent a lot of my time in the last few years kidding myself that life is going to stay just as it is for many years to come. I admitted a while ago that I had realised that my health had changed more than I thought, or maybe noticed is a better word. I suspect that we all sweep along through life believing nothing has changed. Life has its stage post wake-up points, otherwise know as birthdays. There are no wake-up points when it comes to our health. Yes when I started using my wheelchair, but that was 10 years ago, as I said, how can I still be stuck in stage 8? I know that the mitoxantrone treatment turned back the clock dramatically, but I was never able to step out of my chair. The milestones are spaced so far apart that it is easy to kid yourself that you are doing well. I have been kidding myself that I was fine, that I wasn’t going to fail anytime soon, I think I need to reassess that thought. I’m not saying that life will change tomorrow, but I have to start preparing myself for the fact that it will, something I haven’t been doing. Adam may have been, but if he has he has been doing it alone.

I read yesterday several posts by different people, but the one I have mentioned was the only one that hit me between the eyes and left me reeling. Sometimes things appear for a reason a that time, a reason that we don’t see but feel. Emotionally, it was a kick in the teeth, as I had to say by the end of it, that it was a flag post waving in front of me. A warning that time is passing, my body is failing and the future is getting closer. None of that can I change, but I have to for both of us start to prepare myself for it, just as I prepared for the stages that have brought us this far. If you are mentally prepared for what can’t be changed, when it happens, well you keep going, rather than being stopped dead in the water. I knew and had worked on the possibility of losing the use of one of my hands. When it actually happened, I got dressed and went to work, rather than sitting about feeling like the world had ended. I knew the day might come that I might be housebound, I had worked towards that possibility and changed the way I worked, so I could work from home. Every step worked because I was prepared. Now I have reached the point where I have to face the next stage. I have to work on getting my mind around not being able to do even what I do today. I have to prepare for both stage 9 and stage 10. I have to start seeing it as real, not some distant possibility.

Last night when I headed to bed and stopped at the door, was because inside I was hurting. I was fighting so hard with myself over the fact that reality has been knocking on my door loudly in the last few months and I was waking up to the fact that I can’t ignore it. Donna’s post was the final kick I needed. My body and my life had been dropping clues for months, but I was too stubborn to listen to any of them. Being pigheaded is a wonderful tool to have when you are living with a body that is destroying itself. It can really work for you. Sometimes though it works against you unless you are lucky enough to be woken up to that fact, well it is equally destructive. Thank you, Donna.

Please read my blog from 2 years ago – 28/07/2013 – What next? The web? 

For the past 3 or four days I have been plagued once again by edema, I had been expecting to flare in throughout the really hot weather, but there was no sign of it, so what made is appear now, well 

Our ticking clocks

Just occasionally what I write here isn’t driven by me but by something that has been said on Twitter in response a tweet I have sent out, well that is where I am at least starting today. For those of you who don’t follow me on twitter, I send out two sorts of tweet with regard to my blog every day, the first is simply a link into whatever my post is written about and the second is more a statement that says something about the reality of life with chronic illness and are usually upbeat and positive, occasionally someone, normally someone who isn’t ill, will read it incorrectly but that is par for the course. I knew yesterday’s was a little clumsy but stupidly I sent it out as it was rather than giving it a second polish, it read “OK #Chronicillness can mean we are dying – But that doesn’t mean we’re going to stop living”. There is a fact about Twitter that only less than 1% of people who read something actually send a response, so to find that on it’s first post I had 3 people coming back at me, meant there were at least another 298 who also read it wrongly, which confirmed what I had expected. Those who personally don’t have a chronic illness, or one that carries a death sentence, just don’t understand where that sentence comes from.

There seems to be in this world a total fear of facing the future just as it is, not all but many chronic illnesses do carry a death sentence with them and ignoring that fact doesn’t change it, nor does it mean that we think about it every second of every day and let it get us down. Millions and millions around the world at this very second are living with what I keep calling the “ticking clock”, yet their friends and their families pretend it’s just not happening. Even I the one with the “ticking clock” don’t call it death, not because I have an issue with it, but because others do, if I kept calling it my life expectancy or the date I will die, or any of the other things that are nothing but the truth, I would be seen as either depressed or fixated with doom and gloom, which couldn’t be further from the truth. Hence, my post on Twitter yesterday and the expected response I actually got. Yes, everyone is dying, we start doing that before we are even born, but there is a million miles of a difference between that, natural life expectancy and knowing that and knowing you are the one that is not just listening to it, but feeling every tick of that clock. One Tweet out of 217,558 tweets I have sent that has mentioned death and suddenly the lets jolly her along attitude.

When I had my PRMS explained to me and what my possible future was, it was and still is a possible future as no one can actually give me the facts or prognosis, because it’s not known. I know that it is not a pretty picture and that my next flare or progression could stop me breathing or even stop my heart, as that is what PRMS does, it shuts things down, some bit by bit, others suddenly. Strangely that was harder to accept than when I was then diagnosed with COPD and I was told I might have 10 years to live, that one I found much easier to accept and to process into “normality”. What made it all the harder, was the fact that no one would talk to me about it, they just wanted to jolly me, tell me not to worry about it as there would be years of normal life before then. What none get is, I am not worried about it and doubt very much are most of those millions feeling that tick are either, it is our future, our normality, but no one wants to share that, they just want to shut us up and tell us it will be all right. Don’t get me wrong, we don’t want to talk about it every day and in every conversations we have, but it would be nice to not have to bite our tongues when it feels like a natural thing to mention at that moment in time. Somewhere between the Victorian era where death wasn’t just talked about but was in a way celebrated, as mourning is a celebration and respect for the life gone and today where we mention it almost like a dirty word, we have built a monster. No one would ever think of shutting someone up if they were talking about their future, even if what they were saying sounded like total lunacy, but talk about what is far from lunacy, that is a fact and all conversation stops. It isn’t the dying who find the subject of their death difficult, it is those they will leave behind, so we the dying land up stupidly carry not just what is happening to us, but the feelings and expected pain of those around us, talking could break both those things, yet silence and pain is all that is allowed not talking, doesn’t stop either side from thinking and feeling.

I have possibly around 8 years of life still ahead of me, losing Adam will be the most painful part of my future, but between now and whenever it happens, there are a million things that I want to talk about, share and have both of us part of. It isn’t a long goodbye, it’s time to make the most of everything from the knowledge he is still missing about our home and what is in it, to the everyday life skills he is still learning to get to grasp with, like writing a shopping list. There are all the practical things that between now and then that have to be sorted out, but because of my limitations, he will have to do most of for me, all of extremely hard when death is a taboo subject in this mad world. Imagine the reaction if he said at work that he was helping me write my will and arrange in advance my funeral, it wouldn’t be helpful that is for sure, we should be able to talk about it all that way, in passing, as part of everyday life for everyone and not always surrounded by pain and or jollying along chatter.


Please read my blog from 2 years ago today – 19/01/13 – Facing painful facts 

Being exhausted is a state of the now ‘normal’, one that you can’t escape or find a way to cure, it just is. There are so many things in my and all others with progressive illnesses lives that become so much part of our lives that we don’t really think about them any longer. Just as you expect to…..