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……


The world and it’s dog, think of MS as a condition that affects muscles, both in pain but mainly weakness. They see us as future cripples, the people sat in wheelchairs, rarely seen without a carer and simply waiting for the day to pass. After all what value are we to the world, the cripples who can no longer work. Some look at us with pity, but most don’t look at us at all. We are invisible, long before we disappear completely by becoming housebound. I can say that, because if someone had asked me when I was 20, that is probably roughly what I would have said. Just as I saw spina bifida as people wearing calipers until my son was born with it and then died 12 days later. None of us really know what any chronic condition or disability is like until it somehow touches us. Even now, I couldn’t tell you if my Jeffery felt pain or felt anything at all, I just had to take the word of the doctors, that he was at peace in his misshaped body.

MS isn’t just weak muscles and pain, it is so much more. All you need to do is read my blog from its start to today, and you will see that there isn’t a single part of me that it doesn’t affect. Although, I do have to add that what you would read is my version of PRMS, one of five forms that MS took until recently, now there are only four. I discovered yesterday while reading on line that PRMS no longer exists, we have been absorbed into PPMS, although how I’m not sure. I’ve read the description often, and I quite honestly don’t fit. Yet, who am I to argue with the great and the good of the medical world, I am, after all, only the person who lives with it. In fact, I’ve lived with it now for over 30 years, but if you were diagnosed with RRMS, SPMS, PPMS or even benign MS tomorrow, I couldn’t tell you what lies ahead, because I haven’t lived your life. It’s not just MS that this is true of, whatever the condition, all of us would find our own quirks, symptoms, and difficulties, that’s just life though, as none of us live the same one in the same body.

At times people have asked me what is the worst thing about the conditions that I have. Yes, it is plural, I like the majority of people with a chronic condition have a collection of them. Why they travel in gangs, I can’t tell you the medical reasons, but I’d make a guess that once our bodies are weak, we are susceptible to other developing. As for the worst part of it all, well, it depends on what day and at what time you ask me. In the mornings, I am most likely to say that it’s the pain and by the evening the fatigue, catch me in the middle of a brain fog, and I’d most likely look at you stupidly and say very little of any sense. Chronic illness is a minefield filled with monsters, just waiting to take over from each other when the others have got fed up of playing with you. But if you have one, you already know this.

Today, though, my physical monsters are just treading water, the pain levels are set at normal and my fatigue just slightly higher, today, it’s the monster in my brain that is having the most fun. I have started and not finished a dozen things already, and my poor browser, has been straining under the number of web pages that I have opened, most I have little idea why. Concentration is little more than a distant memory. I have even stopped this post more times than you would believe, returning and having to read my earlier entries, and then sitting here trying to work out where I thought it was going. Even now, I’m not sure. Mind you, that’s nothing that unusual. For some reason, today seemed like the perfect day to change broadband suppliers. I had been thinking about it for a while, but out of the blue, I found myself actually doing it. So hopefully, as of the middle of next month, I will be flying on high-speed fiber and miles from the company who couldn’t even answer their phone without getting me angry and leaving me in tears. Yes, I will double check all that I’ve done when my own brain has returned.

I know that I am being rather flippant today, that is quite often the result of living in a muddle, as if you don’t take it on the light side, you’d drive yourself mad, if, I’m not already. Seriously, though, unless you are living with a brain that has been affected by something like MS, you don’t have a clue just how frustrating and depressing the whole thing is. I know that I am still managing to type out word after word and that I will appear to many as not having the slightest problem, but take my word for it, my brain is a mess. All of those wonderful tricks or the gizmo’s that are supposed to aid me in my everyday life, to me, are totally useless. It doesn’t matter what it is, my brain finds a way of turning it into an ignorable annoyance, something that doesn’t apply to me, or at least not at the moment it is trying desperately to put me back on track. It doesn’t matter if it’s a post-it note, a list, an alarm or even something huge in the middle of my computer screen, I can ignore it and totally forget ever even seeing it. Life with my brain is now one long smooth line, uninterrupted by all those annoying little things, like eating, washing or taking my meds. Well, it would be, if I hadn’t long ago started using Adams brain to fill in what I missed and of course my carers now keep me straight as well. Yet, I’m lucid and intelligent, well I think I was once, and might be occasionally now, as long as I don’t engage my brain, it will trip me up in seconds, if I let it and even when I don’t.

There is nothing in my life that annoys me more than those hoards of people who have happily brushed aside everything I have said, then try to tell me of this amazing way they know, of getting things done and never forgetting again. I learned long ago that I wasn’t only invisible, I was also mute as what I have said, was clearly unheard. Until you have spent an entire day, with my brain, in control of your life, you won’t understand, any more than you can understand the effects that pain has me, outside of the pain itself. When your brain is being eaten alive by lesions, nothing is as simple as it was just a week ago, far less a year ago. Unlike my body that now sits in a wheelchair, there is nothing visible that supports my brain. I can’t show it to you, all I can do is tell you, but then, of course, I forgot, I’m mute.

Please read my blog from 2 years ago today – 01/08/2014 – A spark of truth

I am waiting for the phone to ring, Teressa and John are due to come and see us today the first time we have seen each other since Christmas. To be far I doubt I will get a call before 12, after all, they are on holiday and as she is staying with her brother, I know last night will have included more alcohol than is …..

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…..

Making sense of my life

Early Friday morning I had a smile put on my face by a delivery. It wasn’t what was delivered that made me smile, it was the delivery man. No, he wasn’t showing off a six pack, or astoundingly attractive, in fact, he was over skinny, with rather ordinary looks. What made me smile was something he did. I hadn’t expected the first delivery incontinence pads quite so soon, as I had only been on to their website the day before. It had explained that the delivery would arrive in plain packaging and made a promise that the whole process would be discreet. All of which I had forgotten, so when I was handed a huge heavy box wrapped in gray polyethene, I naturally said, “Do you know where this came from?” The driver leaned forwards and whispered, “It’s your pads.” He said it so quietly, that I had to ask him to repeat it, which he did, still quietly, and taking discretion to the limits. You couldn’t fault them in their promise.

I actually needed a smile from somewhere, as I have to admit that I really wasn’t looking forwards to the day at all. In the morning I was expecting the district nurse and I knew that I needed the enema that day. From earlier experience, I knew that the whole process was going to exhaust me. The energy required was daunting to say the less, but I was determined to get through it. On Thursday night we had cleaned out my wardrobe and Adam took 7 bags of clothes and shoes down to the bin. The bulk was made up of dresses all ranging from size 6 USA to size 10 UK, sizes that wouldn’t go anywhere near me. The only thing I held onto, was my wedding dress, which of course won’t fit me either but as it has spent 17 years stuffed into a plastic bag, from which I had intended to have it cleaned and ironed, but never did. There are always those things that hold sentimental value to great to throw out, some got ditched, but not that one.

Adam had presliced about a third of a can of cod roe for me the night before and was coming home at lunchtime to lay the roe, onto some melba toast with some cream cheese for me. While here, he would also do all the running around, bringing my meds and so on through to the lounge. We spoke the night before about how we were going to make things work, going forwards. Without a doubt, I need him home on the days the nurses are here. So we are working on a menu that he will prepare in advance and when home for lunch, just pop them in the microwave for both of us. I am also on the look for a mini fridge. It has to be just the right size and preferably black so it can be morphed into the room. Once in place, I will keep my bottle of drink in it so I don’t have to keep going to the kitchen. I hope I will also be able to keep some food in it so that some meals and snacks will be on hand. I just have to find the right fridge.

No matter how organised life is, or how much you try to make things flow, sometimes, the true impact isn’t about any of those things, it’s about feelings, most often the sort that words somehow fail to explain. If there has been one thing recently that I have had more than anything else, are feelings, the sort that runs away with you and leaves you stranded, with nothing to say. Trust me, even I can run out of words. The worst thing is, it leaves both Adam and I struggling to make contact, I am so tied up, that saying anything beyond a grunt or something that comes out sounding like a criticism, seems to be impossible. I hate myself when I am like this because of Adam. If I could hide away from everyone and be as alone on the outside as I am on the inside, then life would be a thousand times easier, on both of us.

There are so many stages of chronic illness and with every one, there are issues that you never expected to find. From my last few posts, it is clear that I am caught in one of those that is just tearing me apart. Dignity and independence are the two things that without a doubt, are the most important when it comes to self-worth. They are knocked and bashed around with a freedom that you just don’t understand until you enter this world of ill health. We spend our lives thinking that there is nothing that we can’t do, just to find ourselves suddenly physically unable to do anything. With each stage, you lose even more although, you already believe that you have lost everything, and the impact that has is colossal. Everyone around you is keyed up, ready and watching for those first signs of depression, waiting for that day that you crumple. When you don’t, they see you as unbreakable, the person who deals with everything with ease, let me tell you now, there is no ease about it. Just because you don’t become clinically depressed, doesn’t mean that we don’t hurt. My self-worth has been challenged continually, but this time, it is on a scale that I thought like everything else, would arrive bit by bit, rather than all at one time.

Six months ago, I thought of myself as already useless, happy, but useless, now, I can’t find a use for me at all. Yes, the happiness element is still there, as long as I can keep my mind off the fact that my body has found new ways of taking my self-worth and dignity, hanging it out in front of me and laughing. I know before someone tries to remind me, that I have a worth to so many others out there going through this shit, and yes, I know Adam says he can’t live without me, but I’m talking about my day to day life, the one I lead, away from this screen. When you reach the point where wheels have replaced your legs, where other people have to make your body work and even more others, have to clean it for you and dress it for you, well what use are you? All I have left that I do for myself is to feed and water me. The impact of all this, is so huge, that as I said, there are no words for it. They appear in sudden waves that hit you off your center and leave you lost. I wish I could explain how all this is picking away at me and how despite all of it, I am still holding onto happiness.

The more I try to find a way of telling all of you, because I know that it’s important, the more confused that it all becomes. At the core of it all, I believe is my love for Adam. As it doesn’t matter how hard my health tries to destroy me, there is always that love standing there like a guardian, warding off its attempts to finish me off. I can’t explain it better than that. There are no words, just this shield that stops me from falling into that depression all of us fear, but it doesn’t stop it whipping me hour, after hour. I have become a creature who can’t exist, without others to care for me. I am the needy, the being that is tended and administered to, I take and I take so much and give back little. Is it surprising my head has a hole in it, where everything, from every minute of my life, bounces about, and I have no idea what I really feel. I just hope that within this, you can find the truth of how I feel, because I’m even finding that hard.

Please read my blog from 2 years ago today – 11/07/2014 – Time to change again

I wish I could understand why it is that I so often wake during the early hours, to find that I have once again I have somehow managed to twist on the bed into a position where my head is still set on the pillows in its normal position, vouched for the fact that my hair is still spread across the pillows as I place it each night, but with both of my feet out of the side of the bed and actually flat on the floor. Waking like that is incredibly painful, partly because I don’t have the strength to pull my…..