It sounds like a plan

Sometimes the TV shoves things there, right in front of your eyes, which is just as frequently something you want to see, as it something we don’t want to. I doubt that many of you saw “Holby City” earlier this week, for those who don’t know, it’s one of those hospital dramas, where they show medical reality and the lives of those who work there. Although on one level it is just another soap opera, on the other, they show real life medical conditions in the most accurate way that they can. Right at the start of this week’s episode, the ED doctor said that patient had just arrived, with end stage MS. Inside me, there was this amazing conflict, the one that said don’t watch, versed the one that said, I have to see. Just to make things worse, the patient was a woman, not much older than me, who had been diagnosed about 5 years earlier than I was.

In those first few minutes of the show, I found myself feeling so many emotions and so much empathy for someone who didn’t even exist. What they showed was exactly what I knew in my heart, before I even saw her. She was unable to move or to talk, unable to do anything for herself, other than lie there and be cared for. She had gone through the stoma and suprapubic catheter stages and now, all her major organs were closing down slowly. I realised for the first time, why I didn’t fall to pieces when the doctors told me that the most likely end I would have, would be respiratory failure. The idea that my lungs were simply going to be unable to take in air, because my MS, is slowly closing down the mechanism that makes them work, sounded like a quick and painless way to go, I’d sufficate suddenly. It would be over in minutes, rather than lingering for weeks, months or even years.

The story was really about her husbands and her choices over their death plan, they had chosen cryogenics, which meant that they had to freeze her the moment before she died, not my personal choice, and not really the point of what the show made me think about. Of all the things I have thought about, a death plan really hadn’t figured anyway along the line. Yes, an after death plan, but not what happens immediately before. Until the doctors predicted my end, I did have in my head ideas of what I wanted, but they all vanished, which was incredibly stupid. So OK, they might have their ideas of what will happen, and a rough idea from the speed things are progressing , but it’s only their ideas, their prognosis, but they could be wrong, and who’s to say that I will be fit to that last second.

Whether we already have been handed that ticking clock or we believe ourselves to be fit and healthy, there isn’t one of us, who hasn’t thought about our end. When you have been handed that clock, from your original diagnosis or as time passes, we all find ourselves trying to picture just how it will be. Not one of us, picture the reality, we picture the glossy version, the one where we are with those we love and we silently just slip away, after having spent a great day doing whatever it is that makes us happy. The TV shoved right there in front of me, a picture that I had dismissed, but the truth is, it could still be my reality. Her heart stopped, my lungs will stop, not much of a difference really, and it woke me up, out of my glossy version. About a year ago, I toyed with the idea of finding out about hospices and the other option I had considered, palliative care at home, but I did nothing. Back then, it was a much more about finding out what they could do, not so much about my dying, if that makes sense. I had made this plan that I wanted to carry out in a precise order. I had to find out about, plan and pay for my funeral, before, I looked into what happened before. Then was a huge obstacle appeared, as in who owned the grave plot my son is in, and where I want half my ashes to go. That obstacle has been resolved for months, I now officially own it, but I haven’t moved past that point.

Sometimes, we create obstacles in our minds, I didn’t want to think about my end in detail, that would make it even more real than it is at this second. When the real obstacle appeared, it allowed me to stop and I haven’t started it again, not because I don’t have the money, but because I don’t want to make it real. Funerals, they happen after you’re gone, the dying bit, that is the bit we have to do and none of us, no matter how accepting we are, really want to go there. Reality says we can’t avoid it, and maybe, just maybe, if we get to know the details, if we do make our death plans, then we can move on with everything else that this life keeps throwing at us. I think it’s time that I got that plan from months ago on the move again. It’s time to contact the funeral directors, get all the documentation in place and pay for it, then I can speak to my district nurses about the bit before. I already have my DNR, now it’s time to make those death plans, one that covers all the options and possibilities. I don’t know what it will hold, or how it will look, but I have to think about it now, before, it’s too late. Then I can put it away and just live until it’s needed.


Please read my blog from 2 years ago today – 30/09/2014 – Getting angry

I have just gone through yet another painful visit to the bathroom, it’s 11 days since I had last moved my bowels, but I have been taking a tablet twice a day that was supposed to soften the stools and I had hoped that I wouldn’t have to once again take Dulcolax. There is nothing like having a dream is there. Last night…..

Emotional nightmare

I sat in my wheelchair, staring into my kitchen with tears running down my face. Adam was at home and doing what he could, but there was water flowing in through our ceiling. This wasn’t anything like a couple of months ago when water was coming in above the window, because of the storm. No, this was nothing like that, it was a million times worse. This was flowing in, not just around the window area, but everywhere. It was pouring in through our light fitting, the joints between the walls and ceiling and streaming down the walls. There had been a burst pipe upstairs, and every single way that it could escape, it was, right into our kitchen, and all I could do, was sit there and cry. I don’t know why I was crying, I wasn’t sure if it was just the fact that I was watching my beautiful kitchen drowning, or if it was because I felt so utterly useless, or maybe both.

I don’t think that I have felt that useless for a long time. Useless was a feeling that band when I left my first husband, he was the king of making me feel that way, and I swore nothing and no one would ever do that to me again. Even through all the years of being ill, I have never felt useless, frustrated and angry, yes, but useless no. It didn’t matter what I was faced with, I could always find a way of fixing it, but yesterday, I could do nothing. I could put pans and basins where the worst of the water was, I couldn’t even mop up or ring out the towels he had thrown all over the place. All I could do was watch. Adam wouldn’t hear of me even entering the kitchen, he was so scared that the ceiling might come down on me. He said, “I can get out of the way, you can’t”. He was right, but that didn’t help. In the end, all I could do was turn myself around and head to the living room, where I sat and listened, just in case, he needed my help. He didn’t.

At this moment, I don’t know what is worse, feeling useless or feeling railroaded by life. Yesterday, was all about relaxing until the kitchen was flooded, It took Adam about an hour to clean up, after he went upstairs, to turn the water off. Kenny, who lives above us, was apparently panicking and getting nowhere, Adam managed to find the stopcock and left him to it, with his mess, and returned to fix ours. We knew at the start of the day that at some point, we had to decode the instructions for the keysafe. As always, Adam had left it to almost the last minute, and because of the flood, it did land up being totally last minute. The instruction are in English, but the problem with them is they are beyond complicated. All we wanted to do was to set up the password on the safe so that the keys are secure, and when they arrived to fit it this morning, everything would be good to go. It took a full hour, if we couldn’t set the stupid thing, there is no way someone is going to get into it, without the correct code.

I couldn’t believe it when the doorbell rang at 8:30 this morning. They hadn’t given me a time, but I didn’t expect that they would be that early. Luckily, I was up and ready to go. I was actually half way across the hall, heading to the kitchen to fetch breakfast, and I nearly jumped out of my skin. This rather loud, but nice guy charged into the house and set to installing a rather ugly looking box in our hallway. Apparently, if I push the button, they will talk to me through it and will be able to hear me, no matter where I am in the flat. If for some reason they can’t hear me, they will still send someone out. Then he asked for the ladders and fitted a somewhat unexpected fire alarm. It too is part of the system and only sounds until they answer the call, then it will stop. I was worried that I had to somehow hit the thing with a sweeping brush handle. That done, he headed out into the hall, leaving the doors open and letting what little heat I had, out of the house. I know that on the scale of things, it wasn’t important, but with me already being agitated by having this stranger doing things to my home, I could feel it all building. I don’t deal with these sort of things that well and in hindsight, I wish I’d asked Adam to take the day off.

Eventually, he completed all the tests and showed me how the alarm works. I have to admit when he went into the kitchen, talking all the time to the voice in the box, I was surprised that they could still hear him with ease. He tested the fire alarms connection and eventually let me press the panic button attached to my wrist. Oddly, both in appearance and sound, that box has a huge resemblance to an old fashioned modem. You can wear the alarm on your wrist, or there is a cord so that you can hang it around your neck. I have chosen to put it on my wrist, as it is shower proof and easier to deal with in bed. I used to wear a watch 24/7, the panic button itself is smaller than a ladies wrist watch, so it shouldn’t be a problem there. No matter what happens, if I need help and Adam isn’t here, I can now call for it. It all works, but it has left me with this strange feeling, not the one that I expected. I don’t feel safer, I feel watched. They can’t see me, they don’t know what I am doing and there is no connection between their office and my home unless the alarm is triggered, but I still feel watched. I’m sure given a little time, that feeling will go, but right now, it’s not nice.

The last 18 hours, despite the fact that I slept through 10 of them, have left me feeling as though I have been traveling solo at a hundred miles an hour. I don’t like life like this. I don’t like things being out of control and that’s how it has all felt. All I want is a little peace and a little time spent doing what I thought we were yesterday, relaxing.


Please read my blog from 2 days ago today – 28/09/2014 – Fit for purpose

I want to go back to my bed right now. I was up just 15 minutes late last night and I am sure it is just physiological but I feel like I have missed half my nights sleep. Like anyone when they are tired, I am finding concentrating and staying doing what I am supposed to be doing, rather than going off somewhere……

Not again

There seem to be so many things that come with PRMS and Fibro that seem perfectly designed to drive us straight up the nearest wall. For example, I woke this morning to discover, that once again my “nappy” was wet. It’s not the best start to my day, it wouldn’t be for most people over the age of 3, but for me, it has another implication, one that says today is going to be a wet day. Not surprisingly, that never fills me with joy. It’s four months now since I first woke up wet, and the NHS supplied me with a mountain of pads. Yes, I have accepted that this is now part of my life, but I’m not sure that I will ever get used to it. Back then in those first days when it all started, I thought that that was my life, that every day from that moment on, I was going to be constantly wet. I was wrong. I can actually go for several days, with nothing more than a few drips, but if I wet myself over night, well, it fails almost every time I need to go, that day and often for several more. Like everything else in this mad life of mine, there is no rhyme nor reason, but oddly, I have noticed one thing that doesn’t make a lot of sense. I never start wetting myself, when I am sitting. It only happens if I am standing or lying down, but once started, it doesn’t matter what I do, it keeps going until it’s happy to stop.

Throughout my life, there has been one thing that I have held onto tightly, and used at every turn, logic. Everything had to be logical, or it quite simply drove me nuts, that was, until I managed to understand it. If there was someone sitting out there, wanting to find the perfect way of bringing insanity into my life, well they found it. Not one symptom of either of those conditions, can you apply logic to. To me, the most natural way for my body to think it was OK to open my bladder, would be when I am sitting down, yet it chooses to do so in the two positions, that make no sense at all. Just another symptom, that there is no logic to in any way shape or form. Every single day of my life, my body does something that is totally illogical, on every level but one, it’s MS. Quite honestly, I am more than fed up with everything that is wrong with me, being put down to MS. In some ways, it’s more annoying, than when I didn’t know what was wrong with me, because back then, I at least had hope that one day, someone would be able to fix me. There is no logic to MS, no one understands it, so why do I still think that I should? So here I am, stuck with it, incurable, illogical, and totally annoying in every way that I can think of. OK, I’m having a rant, I don’t do it that often, but if I didn’t, well I really would be too good to be true.

I guess all of us struggle, no matter how well informed or how long we have lived this way with certain aspects of our health. In fact, the mental battle is without a doubt the biggest battle of all. No matter how long ago it was that you made your peace and accepted your life as it is, there are always going to be those things that niggle away at you. Acceptance isn’t a one step journey, you go through it again and again, taking it one step further, but you never complete it, because as long as your health keeps progressing, you are going to have to keep accepting. Right now, I believe I am totally at peace with the fact that my life is slipping towards its end. I’m even at peace with the fact that the doctors believe, that I will die from respiratory arrest. Yet something so tiny in comparison, like wetting myself, can send me into a rant. I will never totally complete that journey, until moments before I complete my life. That is, unless, I do what I normally do, have a somewhat delayed reaction. Well, I really should have had that rant four months ago, but it didn’t happen them, it waited until now.

Just as we don’t know what our bodies will do to us next, we never really know how we will react to it, until it happens. It doesn’t matter how many times we have read those symptom lists, or how many other people we know, who are further down the line until something happens to us personally, we have no idea, what our reaction will be. I remember years ago, about 2 or 3 post diagnosis, I had made my mind up that I could deal with anything other than incontinence. I did actually at the time, believe that that would be my signal, that it was time to end my life, but I’m still here. It really isn’t nearly as horrendous as I thought it would be, in fact, it’s actually really easy to handle. For some reason, though, back then, it sounded so disgusting, so degrading and so nasty, I couldn’t see how anyone could actually live with it. I don’t need to paint the pictures that I had in my head, I’m sure you can manage that one yourself, but the reality, is so different, that I actually felt nothing but relief at first. Maybe, that explains my belated rant, the relief has run out and reality is dawning. It’s just yet another annoying part of being ill.

Without a doubt, our opinions change as we grow into our health. No matter how annoying being ill can be, there is also a growing peace that comes with time. I doubt anyone can be angry forever. I for one, know that most of the time, I am now quite content with the way my life has played out, it wouldn’t have been my personal choice, but it’s not nearly as bad as I thought it might be. I might still get frustrated at the lack of logic in my life, but it’s honestly not a life that anyone out there couldn’t live. Maybe one day not too far in the future, I’ll wake without that feeling of dread, but a feeling of normality at the start of just another day, wet or dry.


Please read my blog from 2 years ago today – 26/09/2014 – A spot of luxury

I have just wasted about 5 minutes trying to understand one of those stupid text messages sent to my landline, why people think that automated messages are understandable I really don’t know. I still didn’t manage to write down the garbled website name they wanted me……

I want to live

It’s odd how you don’t notice thing sneaking up on you. How days pass and in nearly every way, they seem to mirror the day before, yet they couldn’t have been. Logic alone says that they had to be different from each other, they must have been, as today, my health isn’t the same as a month ago or even the one before that, but it still mirrors yesterday. No matter how good we are at monitoring our health, it still manages to catch us out, to produce effects that we don’t link together, or simply miss in the mellay. Sometimes I wonder if we just choose to not see, to not notice. If we can’t help ourselves from pretending that life truly is nothing more than days that mirror each other. It doesn’t matter if it’s just a series of spasms or the fact that you are having to think about breathing, rather than just doing it, we quietly tell ourselves it’s nothing to worry about, nothing worth even thinking about, then file it underneath the ever growing pile of things we choose to try to forget.

Progressive illness doesn’t always show itself to the world, it doesn’t even really show itself to us, those who are living with it, in the way that many might think. We don’t get huge notifications, sudden mega changes or overnight announcements, it prefers to sneak around, tweaking this or that, then sneaking off somewhere else for a while. It will give us clues along the way, dropping the odd hint every now and then, but as I said, we become all too good at filling them, where we don’t have to see. It’s not that we are hiding from our health, we’re not, well, that would actually be impossible, it’s more that we just prefer to live. No matter how ill we are, no matter what our prognosis, we just want to live and that’s what we do. If we spent our lives worrying, if we noted down every new symptom, every tiny worsening, we’d go mad, so instead, we choose to live. I know without a doubt, if a normal healthy person, felt a fraction of the things I feel in a day, they would be banging down the doors of the nearest hospital, but I, I do nothing, I just live.

There is a mind shift that takes place, somewhere along the line, a change, that like everything else, I don’t know when it started, I just know it happened. I’m not sure if I learned it, or if it’s just another silently documented part of this whole mess I call normal. What I do know, is that there is no point in constantly telling the medics that this or that has happened, or that this or that has changed. They do nothing, they listen, they empathise, they make their notes and they tell us to monitor what’s happens over the next week, month or even year. If it’s bad enough, you call them and demand they change the dose of your medications. More drugs, more medicine to mask, to cover, but never to take away. But it never stops, it’s always changing, even when you think things are stable, when you think you are on a plateau, you simply wake up one day to the truth, it never stopped at all. Like a serpent, it has been winding its way around inside you, flicking switches, changing junctions and disrupting your life silently, until all those changes line up. Then it happens, that breath that you can’t quite take, that pain or that spasm, whatever it is, it happens and you know without a doubt, that once more you’re aware, that once more the medical mask has slipped and reality crashes in again.

It often feels like you’re living in some sort of maze that was constructed by an evil genius, without any entry or definitely no way out. You know there is no entrance because you wouldn’t have chosen to enter, and the exit, if it exists, it’s hidden so well, that even after years of searching, you can’t find it. Yet, still, we choose to live. Many might ask why, well what is the point of an existence where you see no one, do nothing and serve no clear purpose? Trust me, I have asked that question again and again, but the answer comes back the same, no matter the pain, no matter the isolation, no matter of anything, I want to live. Life doesn’t have to have a purpose, it doesn’t have to have meaning, life is just life, it’s up to you what you do with it, but it’s not up to you, what it does to you. We just have this one shot at it, this one messed up chance to find out why you’re here, to find out what it’s all about, and if you don’t grasp it with both hands, and hold on tightly, then more fool you.

None of us choose this life, none of us want to live this way, but that doesn’t mean we don’t want to live. There will be a time when that changes, a time when I can no longer hide those things I don’t want to see, and no doctor can hide them for me. But as long as every single one of those mirrored days shines back a smile, what does the rest of it really matter. Every day my health gets a little worse and every day I still find my smile, every day I find my happiness and the happiness of others. If you really want a point to all of this, then there it is, the sharing of happiness, even in the bad times, as if there is still happiness, the bad, somehow, doesn’t matter.


Please read my blog from 2 years ago today – 24/09/2014 – Ouch

I lay down last night and in second I was up and sitting on the edge of the bed, I had the worst spasm I have ever had in my diaphragm. Despite all my meds, I was in pain, real pain, not the sort where you are just rubbing or massaging the area, it was the sort of pain where I had to stop myself…..


How do you tell a good care company for a bad one? It’s a question I have been grappling with for the last two weeks. I am in the midst of what they call personalisation. Basically, at the moment, we only pay part of the cost of my care, the rest of the bill is picked up by the local council, but as things are, I can only ask for care from the council run carers, Cordia. My social worker has made up a pack of information about my needs and so on, to put to the council and if they approve, the equivalent amount that they pay to Cordia will become my personal budget. From there on, I can choose anyone to supply my care, that I feel is best for me. The meeting with the budgeting department takes place later this week and by that point, I have to narrow a list of six companies that operate in my area, to just three. It’s really hard to know which ones to pick when I know nothing about any of them.

It was really easy to get one off the list, as my searches online, showed that the police are investigating them, for a case of cruelty towards one of their clients. Other than that, I couldn’t find a single thing online that is independent of the companies own sites, by way or reviews, complaint or recommendation. All I really have to go on is what they say about themselves, and of course, the Care Commission reports. I spent most of yesterday afternoon, trawling through pages and pages of information, that at the best was dry and at worst mind-numbingly boring. Reading reports and so on is something I am finding more and more difficult. I get through one paragraph and can’t remember the one before. I simply spent ages going around in circles. On nothing but small niggly little things, I took two of the list, but I still have one too many. There really isn’t anything to separate the remaining four, and I would have been surprised if there were. So how do I choose? What on earth are you supposed to do and how do you know if you’re right or not? It really is coming down to whether I like their site layout and design or not, and I know that sounds flippant, but how do you choose these things with so little to go on. Once we have our budget approved, well then I can contact them, have them round to the house and if you like, we can interview them. Something I am equally not really looking forward to.

To be brutally honest, even though the care is for me, I really could do without all of this. I don’t actually feel up to it. I know it’s not the way life works, but in all honestly, I just wish this entire part was over and done with. I wish that I had been satisfied with Cordia, but between them not always being able to supply a carer at the agree time, or being able to send them even to the correct address on two occasions, well my confidence in them has been knocked. They have at last managed to supply continuity in who is here, but that has only happened in the last three weeks. Prior to that, it just kept changing. The carer who is showering me now is fine with most of the work that I ask her to do, apart from two things. Firstly, she has bad knees and winces and groans every time she goes down on them to dry and cream my feet. Clearly, I have empathy for her pain, which makes me feel bad about asking her to do it. Secondly, her favorite topic of conversation is how badly her manager is organising things and her likes and dislikes, of other members of staff. I was never one for gossip, even when I knew the people concerned, but I don’t and that somehow, makes it even worse.

On the upside, ahead of the budget meeting, I have already been approved for the Pendant Alarm. They phoned me yesterday, to let me know that they will be here to fit the sensor and set up my alarm for me on the 27th. When they were on the phone, they questioned the fact we had put down only Adam, as an emergency contact. I explained that there really wasn’t anyone else and that we had looked into having a keysafe fitted, but due to the fact that the outside of our building is made of sandstone, it wasn’t suitable. She then told me that they could hold the key which would give them enter to the close, but not the keys to our actual flat. We would then require a keysafe, fitted to the wall by our flat door to hold the keys for that one, that wall is made of brick and does meet all the requirements. Not only could we have the keysafe, but they would fit it for us as well, saving us the £60 fitting that they company wanted if we asked them to do the work. This was something that hadn’t been suggested before, I thought straight away that it was a great idea. So I went online and I bought one, all Adam has to do this weekend, is go and get some keys cut. The doorbell went this morning, and there was a delivery man, with a parcel for me. I couldn’t think for the life of me what it was, especially when I took hold of it and nearly dropped it. Its weight was over 2kilos according to the label, but it told me nothing else and I still didn’t have a clue what was inside, but there it was, our keysafe.

I am actually finding all this coming and going, form filling, changes and phone calls that I have to respond to, rather overpowering and even somewhat disturbing. If I look back even just to four months ago, my life has been turned and twisted in ways I never thought of and I quite honestly don’t recognise it as mine. In some ways, I do feel and see the benefit of it, but I would just love for everything to settle down and become quiet as it used to be, but it’s something I doubt it will ever be again. I realised the other day that once I start having someone here to cook my lunch for me, I am not going to have a single day to myself, which is something I’m not sure I want. I have spent so many years where my weekdays have been mine, which I actually loved, but now, every day is being eaten into, even if it is for only 15 minutes when the nurse is here to administer an enema, it’s still a day disrupted. For that reason, I am thinking about changing the lunches to just three times a week, then I can still have my two days of isolation. It wouldn’t hurt me to have two days of cold food, after all, that’s mainly what I have lived on for years. I still have time to think about that one, unlike the choice of the company who I’m going to employ as my disruptor.


Please read my blog from 2 years ago today – 22/09/2014 – A new peace

It feels like this week has lasted forever and all I have been doing throughout all of it is a fight to make myself better. I already know that the antibiotics have failed in what they were supposed to do, they may have shown up other problems and saved me from a spell in hospital, but they haven’t managed to cure the ‘Things’ they….