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……

Angels do exist

I can’t believe just how different I feel from a couple of days ago, to today. There are two people that I really need to thank for it, and both of them are district nurses. I didn’t realise that when I agreed to haveing the enemas done that I would find two such angles amongst those administrating them. Yesterday, the nurse who I think is the boss of the whole group was here and she has not put my mind at rest totally. Even though I knew that I didn’t need a catheter right at this minute, the whole thing about calling for help if I had problems was still bugging me. Anyone who has been reading for a while will already know the palaver that leaving the house and going to and from a hospital is, and although I had been told that I could call NHS 24 who would probably call one of the district nurses out, there still was a huge issue niggling at me.

The district nurses who come to see me, work out of a local health center and although they have a range of different things to hand, it isn’t like a hospital where everything for every possibility is there just waiting. If they did get the call, it would depend on my luck if they could help me or not, simply due to what or what wasn’t, in the store cupboard that day. I might still land up finding myself sitting here waiting for them to find either an ambulance with a stairclimber or a four man crew, to get me down all the stairs to the street. Getting there is usually the easy part, hopefully, made easier due to it being an emergency, it’s getting home that is the nightmare. I could be waiting for hours just to get home again, the worst to date was 7 hours. I didn’t need to explain this to the nurse here yesterday, she was very aware of the horror stories, it was then that she suggested the most logical thing yet, that has been said in this whole thing. She asked if I would like her to order a kit for me, so that if I couldn’t go to the loo, all I had to do, was call them, and someone would come to my aid, knowing I had everything here waiting. As she said, “if it never gets used, it doesn’t matter, it’s there just in case.”

The weight that lifted off me was far greater than I realised when she said it. It was just two weeks ago that I found myself sitting in the kitchen chain smoking and in tears because my bladder hadn’t emitted even a drip for over 10hours. I wasn’t in pain, but I was dreading the outcome, that was becoming more likely by the minute, that call that might have just found me once again at the mercy of the ambulance service. Until we get my bowels working to an acceptable level, it is something that could happen again with ease. When I told Adam later that evening that they were putting together a kit for me, he admitted that he too had been worrying about just the same thing. He has suffered alongside me on many occasions, and he knows as well as I do, what the effect on me is. I hate to say this, but it is so rare to come across someone in the NHS who works on logic, not procedures. I really feel that I have found a group of angels, who are going to do whatever they can to make my life easier. Although I haven’t yet spoken to them about it yet, I know from the little they have told me about their work, that they are also the people who will be with me through to my end. They provide the palliative care that I was so lost about months ago.

Actually, the whole plan that I was putting together stalled, when I found out that Jefferys’ grave, was in my ex-husband’s name. That is now all sorted out and the grave deeds have been transferred into my name. I don’t know why I haven’t picked up from where I left off, but I didn’t. I guess there was so much going on when the corrected deeds returned from Aberdeen, that it all sort of landed up shelved. I know they say that when you don’t carry through a plan, it’s because you don’t want to, that’s not the truth by a long shot. All those who matter, now knows my wishes for what happens after I die, and that I have found the funeral directors who actually have the package that I want for my funeral or “none funeral” would be closer. I just need to make a phone call and get the whole thing set up and paid for.

We do now have the whole issue of carers sorted out and we have made our first contacts with the social work department, so we are moving forwards with other pieces of what will happen as the end get’s closer. It’s just things haven’t quite happened in the order that I had them planned in, but that’s life I suppose, best-laid plans and all that. I guess when I started this post by saying that I am in a very different place from just a few days ago, is the reason why I once more feel that I can even think about my plans. I have been in a constant state of flux for a long time really. I’ve moved forward one step and found myself going backward before I even noticed. I now feel that I have the right people around me, so if anything else tries to knock me over, they are there to help me get back to the surface again, and that’s something really special to have.


Please read my blog from 2 years ago today – 10/08/2014 – No friends

It’s one of those rare Sunday’s, I am typing in peace, no snoring from the settee as Adam has actually decided to sleep in our bed. I really shouldn’t mock it has been several years since he chose to start sleeping on the settee just so I could get the undisturbed sleep that is essential. At first, he would sleep here until I appeared and then head off to the bedroom, but slowly that stopped, he…..

Brain buster

They say when you watch something, it never does what you’re looking for. Well, mine eventually did. I’ve been staring at the phone on my desk, willing it to ring, for the incontinence nurse to call me and let my know what her boss said. When she did, you would have thought that she was reading out the results of some sort of competition, giving me all the points that they took into consideration, before just telling me what I wanted to know. They have looked at all the scan results and my history and present problems, especially those being caused by my intestine and bowels and for now, they don’t think that I need to have any form of a permanent catheter. What they want me to do is to be careful to be sure that my bladder is as empty as possible whenever I go to the loo. This means that I have to double void each time. For those who don’t know what that means, I have to stand up and move away from the toilet for a minute or so, then return and try again. I also have to use a method I have already been using for years, to rock gently side to side and back and forward, which as I knew already, makes the urine move out of it’s hiding spots and out of me. They believe that if I continue to do this, I should be alright until the problem with my bowels is sorted, when hopefully, the problems should lessen. She once more added that if I do find again that I can’t empty my bladder, then I must call for medical intervention immediately.

I didn’t tell her, but when I spoke to the district nurse on Friday, I had talked through with her, the reality of implementing her final point. She was just as I dumbfounded by the idea of calling 999, within minutes of finding I couldn’t empty my bladder. We talked it over and quite rightly she agreed with me that that was just not a viable plan. I can with ease sleep for 13 hours without once getting up to go to the loo. Therefore, my bladder, nor I, am in any type of danger for that length of time. That is, of course, as long as I am not in severe pain. As she said, I’m not stupid, I will know in myself if I need help or not, but maybe that guideline of 13 hours, should be my max. I am also not stupid enough to leave it any longer than that, as I am well aware that urine can turn toxic to my body with ease. Which is a problem for anyone, but for someone like me with a compromised immune system, something I need to be careful about constantly, hence the double voiding. Should I feel at all that I need help, then I should call NHS 24 or my doctor for help. There should be no need for me to be dialing 999 unless I know something is horribly wrong. Both NHS 24 and my doctor would be able to send out a district nurse armed with a catheter to my assistance. After that, well then we can talk it all through again and possibly include a detailed chat with a urology consultant.

I have come to the conclusion that the continence nurse who has been coming to see me, just likes to scare people. There was no need what so ever for her to have worried me the way that she did. She could quite easily have left here without saying a word about permanent catheters at all. Returned to her place of work and talked it through with her boss, then telling me, exactly what she did, when she phoned me. If she had done that, then I wouldn’t have landed up feeling as I did and I would have had a much better end to my week. I have learned one lesson from all of this, should I see her again, I will not let myself be wound up until she has checked her “thoughts” with someone else first.

I have to admit that I have been lucky and I haven’t come across many like her. On the whole, the medical profession has always told me their thoughts, but done so in a way, that it felt like they were imparting information, not telling me that there was no other option when there was. Just like the consultant who I saw about my bowels, he laid out all the possibilities, what they could and they couldn’t do and what they thought needed to be explored first, hence the enemas. Even though I left there knowing that this was the last possibility, but at the end of the day, if I couldn’t cope with it, the final option was down to me, I could request a stoma. When I left there, I felt a little shell-shocked, but I didn’t feel as though I had lost control. In fact, it was the total opposite, and it left me with a new problem, when and how to make that decision, and I still don’t know how to do that.

It took me many years to realise that the medical profession doesn’t have all the answers. What they have are possibilities. In an emergency, they make the decisions for us, but when it comes to those things that aren’t going to kill you in the next ten minutes, the choice suddenly becomes ours. No one can do anything to you without your permission, that’s clear as you always have to sign those disclaimers, but there are times when you want them to tell you, not suggest to you. About three years after I was diagnosed, my health was so bad that my Neuro offered me chemo. It was all explained to me, how it would affect me and most importantly, what they expected it to do for me. What they were offering me, was a way of turning back time, they could say how well it would work, or if the results would be long term, or just short, but it was the only option there was. To me, that was an easy choice. Without it, I was heading downhill so rapidly that I would have been a vegetable long ago. It didn’t feel like a choice, it was a no-brainer. Everyone wants to live, to be able to function as a person. I wasn’t going to say no, if I had, I would have hoped that they would have sectioned me and done it anyway. Where I am now, is totally different.

If the enemas work properly, they will not only move the faeces out of my body, but they will remove the pressure and pain that I live with daily. The short spell I had last month when it appeared it was working, I found a new appetite for food, I could breathe with far more ease and both the pain and pressure were gone, even my mood improved. It was wonderful. Now, we’re back at the start, it is as though none of it ever changed. If I have the stoma, well it removes the problem of getting rid of the faeces, and hopefully the pressure, but there is no guarantee it will change the pain in any way. The pain is caused by my nerves and removing them and my intestine, might not change the pain at all. I will also spend the rest of my life with a bag attached filled with poo. How do you choose?

This week, we’re stepping the enemas up to three times a week, if that doesn’t do it, I could have them every second day. How many weeks or months is a fair trial? What if they never give me the result that I want? Am I asking and expecting too much? When do I say enough and if I do, will I be any better off? This isn’t a no-brainer, this is a brain destroyer.


Please read my blog from 2 years ago today – 08/08/2014 – The small things

Once again I crawled off to bed at 8:30 and slept all the way through, which of course leaves me with a problem as to what my new drug routine is doing, as every night I have taken my drugs later, I have gone to bed early. Now that doesn’t make any sense to me at all, surely not taking my drugs should make me want to go to bed later not sooner, as I have shifted my routine and once……

Mentally unfair

When you are by yourself, as I am, day in day out, it is incredibly easy to take things to heart. What I mean by that, is that when someone says something perfectly innocently, it is heard or read in a totally incorrect way. When you send as many tweets as I do, or write as much, it’s not really surprising that from time to time, I completely innocently upset someone. It is even more likely to happen when your main audience is those with chronic illness, including those isolated as I am, by being housebound. When you are feeling down, are in a lot of pain or feeling more alone than normal, well we all take things in ways we normally wouldn’t. It used to be something I did a lot until I started to realise that I was just being precious. Then there are the times when I have suddenly found myself face to face with those I have upset, well, as face to face as the internet allows, and trying my best to sort the whole terrible mess out and often making it worse. The result is that now you wouldn’t believe the care that I try to take when I write anything, beyond a, “thank you” or a “(((hug)))”.

It is amazing just how much our moods are affected by what is happening to us at that second. As I said, I have frequently thought that someone was being either really nasty or far too personal for comfort. If you are like me, someone who has only come to social media since I became unable to work, understanding just how 140 characters, (as on my pet favourite Twitter only allows) can skew the real meaning with ease, takes time. Reading what isn’t there, is beyond easy. In the first year, I lost count of the times I found myself sitting here feeling wounded, but for some reason, I’m not the sort of person who makes a fuss about it. I just sit here quietly hurting, and actually making myself feel far worse than I did before I read it. It is easy to say, just take it with a pinch of salt, but when your body is racked with pain and you’re looking for an escape, not persecution, it’s sometimes hard.

Our bodies have so much to answer for, being in chronic pain is something that you get used to, but when you’re having a bad day, it’s affects us in ways we don’t expect. Without a doubt, I know that I, and probably others, wouldn’t bat an eyelid at any of those silly things that turn into that straw that breaks us. I’m using social media as it’s an example, as it one that I know for sure, we have in common. It could just as easily have been something on TV, or that our partners have said, whatever it is, I’m sure you can all sight your own examples. It’s easy for us to understand what is happening when we look back, but others aren’t always that patient. Adam has told me that he has often dismissed all I was saying and how I was doing so, because, he knew that that day, I was in pain, although I was totally unaware of my error myself. Those online can’t see me, don’t know me, and some often don’t care. So like so many things in our lives, it is us who have to take the care, choose our words, and our subjects, with others foremost in our minds. Our lives are so complex and as much as we like being around people, they don’t half make our lives harder.

Chronic illness steals so much from us, and for some of us, our patience is just one of them. I have to admit that I have over the years went through spells of hiding. I know that sounds odd to some, but when you’re struggling and you know that you have recently upset a couple of people, even when for the life of you, you couldn’t see how, it just feels easier to avoid them all. If I have hidden away, I know for a fact, that that means there will be others out there who have done just the same. If blogging has taught me one thing, whatever we have done, someone else out there will have done it as well. The one thing none of us should be doing is hiding. People don’t understand what is going on in our heads. They see our illnesses as physical and never take into account that the mental impacts can be huge. Just because most of the time we handle things well, doesn’t mean that we don’t have our off days. Every spasm, every time that we find ourselves with our arms too tired to push that wheelchair another inch, our mental state changes. It affects what we say and how we say it, and because we are so tied up with ourselves, we don’t always notice it and we can’t tell you, we don’t mean it.

We are tested in ways that the able-bodied and healthy will never understand. What our bodies do to our brains, especially our emotions, is something I know I didn’t understand, until I found myself here. It is only those closest to us who see it, feel it and know how to handle it. Our lives are nothing like they once were and this is just yet another example of how screwed up it becomes. So if I do at any time accidently hurt you, I’m sorry, and if you do me, well, I promise to understand and just brush it away.

Please read my blog from 2 years ago today – 29/07/2014 – Unable to stop

I am in one of those “I just can’t be bothered moods”, not normal for me I must say. In fact, I don’t remember when I last had one, I just want to do nothing, not here online or anywhere else, I just want to curl up and disappear for the rest of the day and worse still, I don’t know why. I hate this, I know some……

From the forgotten

I feel like hanging out flags and setting off some fireworks. Today, after 2 months of fighting with them, Talk Talk, the suppliers of my broadband service, have agreed that the problems we’ve been having, isn’t caused by anything in our home. That is, despite my replacing all the internal wiring, the router, and the telephones on their instructions. When their engineer arrived at the house within a minute, he located the issue as outside the house. All they have to do now is fix it and then I’m going to try and make them pay for the equipment that I didn’t need to buy, and all the stress and upheaval that they caused in my life. I know that that will be an even bigger battle, but at least the first step has been taken and I feel great about it. There really isn’t anything worse than feeling like you are being treated like both an idiot and a liar, when you know perfectly well, that you are neither.

Even if you are fit and healthy, the way some of these companies treat their customers is abominable. On the odd occasion, that I got past the person who answered my call, and actually spoke to a manager, I very much got the feeling that I was being patted on the head like a two-year-old. I told them on several occasions that I was disabled, housebound and needed both my phone and the internet as they are my only connection to the outside world, they still didn’t seem to take it as any more serious than an inconvenience. The problem with these huge companies is they don’t care about those who are making them money, we are nothing but a number and if they lose you, they will replace you with someone else. I haven’t told them yet, but the instance that this is all fixed to my satisfaction, I will be leaving, as soon as I can. I just wish that there was some way of making them feel the pain that they have been causing me, but that is impossible. I quite honestly believe that they have been behind much of the recent downturn in my health. I have been left several times sitting here in tears and with stress levels off the scale, while they continue on happily with their own little lives.

To me, this is yet another hole in the disability rights. Every company has to now supply access to their buildings for the disabled, they also have to employ a certain number of disabled people, but once past those physical situations, there is nothing that says we have the right to service appropriate to our conditions. As someone who is housebound, it goes without saying that my telephone and broadband service are essential. Without them, I have no contact with the outside world, there for, it is essential to my health. Right now, both my gas and electricity supply is protected, even if I didn’t pay the bill, they can’t cut the supply. My telephone company can do whatever it wants, how is that right?

Recently, here in the UK, there has been a drive for staff to be trained to be able to supply service for people with dementia. I don’t have dementia, but I can get just as confused and just as agitated as someone who does, due to the brain damage that I have. That drive is focused on shop and bank staff, there is nothing similar when it comes to their call centers, which these days is most people’s point of contact. I wouldn’t have the slightest qualm in having it written on my account that I have with every company I have dealings with, stating that I have a disability that needs specialist help on the phone. I have said many times before that I have huge issues making phone calls, but it came down to my having to make the calls to Talk Talk for several reasons and despite my telling them, over and over that I have a disability, on some occasions, I have even said it affects my brain, but nothing changed, nothing happened until I broke down in tears. It is so wrong that we are treated this way. Businesses have to change, they have to, as if they haven’t noticed, there is a huge aging population out there, many of whom will in time need specialist attention when dealing with them. The more elderly there are, the more people with chronic illnesses there will be, it’s a simple fact. If companies want our money, they need to shape up.

Sorry for going off on a rant, but as you can probably tell, this whole thing has really got to me, and it’s not even over. Unfortunately, you have to have your life turned upside down before you start to see the wrong in the world. Even worse than that, once you can, you’re not in any condition to put up the fight to get these things changed. Sometimes, I think the outside world knows that full well, in fact, they don’t just know it, they bank on it. We are the forgotten, the ignored and the put upon, simply for those reasons, and like everything else in chronic illness, it simply isn’t fair.


Please read my blog from 2 years ago today – 23/07/2014 – Pulling things back together

Calm and ready to go, well that is the story I am telling myself today, calm being the most important part of it all. After yesterday’s free fall into confusion, panic, isolation, agitation and pure hell, today has to be a better one and the best way I know of achieving that is to stay calm, to hold on to the normality of my day and just work my way through from now to bed time without letting go of total…..