We have to give it some love

I have discovered that chalk and cheese really do exist, and not just in the flippant words of someone desperate to visualise to the world. Yesterday, for me was without a doubt, the cheese, well, to me, cheese is always the good side of that phrase, as I have never had a great use for chalk. The trip to and from the breast screening clinic went without the slightest hitch. In fact, we were actually home again, before the time I had been given for my appointment. I know that doesn’t sound right, but trust me it was. The ambulance arrived incredibly early, it wasn’t long after 9:15 am when it pulled up outside the house, my appointment wasn’t until 11:58. Luckily, the system in all NHS units in Glasgow is the same, as soon as possible, if you have arrived by Hospital transport, you are seen. I know that may not sound fair on those arriving on time for their appointments, but it is the only way that it can really work. It would be pointless having ambulances arriving to take people home if they are held up in the waiting room. So we are always in and out, even though we often have to wait hours to get home again. Today though it worked the way it always should, dropped off and picked up again an hour later. And yes, the stairclimber worked perfectly both ways, down and up again without a hitch. Well, just one, my top is one of those that actually comes down to your knees, but when I sat down, I forgot to pick up the free material, and it caught in the wheels. Just as they had just gone down the first step, when everything came to a halt. My top now has a tiny hole in it, but at least it didn’t cause the stairclimber to breakdown as it is so keen on doing. I did though have that horrid sinking feeling, as it flashed through my mind that we might be stuck, just as we were last week.

For those who haven’t been for breast screening, it is the simplest and most painless process I have been through for years. I had been for a screening once before, about 20 years ago now. Back then, you entered a room to be faced with this huge piece of machinery that was daunting, to say the least. It has now been changed for a far more streamlined version that doesn’t clunk and whir but is totally silent. It isn’t the most comfortable thing in the world, to be stood there with one breast clamped to the machine by a see-through plastic vice, but it is nothing more than a sensation of being squashed, and each image takes second for them to take. 20 years ago, you were clamped by what felt like an iron vice as your breast was squashed by a metal plate that contained the x-ray film. Somehow, being able to still see your breast, even though it is in a way and shape you’ve never seen it before, is slightly more comforting. But, for me, it was the second time that morning that I had that sinking feeling, a flash of doom being stood beside me. As I said, I had to stand for them to be able to take the x-rays, and as you know, my legs aren’t exactly trustworthy. I just had this horrid image in my mind of them suddenly giving away, and the question of what would happen if they did. Well, you can’t blame me for wondering for just a second, how tight that vice really was, and which was stronger, my skin, or its hold. Trust me, I did my best to get rid of the image.

I now have 6 to 8 weeks to wait, before I will hear the results. Because of Adam’s mother having not long ago gone through the exact same test, I know that if they find anything wrong, you hear a lot sooner than that. So in a way, the longer you wait, the better the odds that its good news. By the way, his Mum is doing really well and seems to have made a full recovery from her mastectomy. She has had the results back as well from the pathologist and no more treatment is required. They say that there were no signs of cancer spreading outside the actual lump, so she won’t even have to have chemo, which is brilliant news.

As the clinic is actually in the city center and not at our local hospital, we had the chance to chat to the attendants. It is actually quite good getting to talk to different ones in a short period of time, as you start to build a fuller picture of the truth of what is happening in their work. There is no secret that they NHS is doing it’s best to deter people from using the ambulances service unless they are really needed. In the last week, I have heard of people who have insisted that they need someone with them, just for their carer to go and do their shopping, while their so-called charge, is actually in the hospital. Not quite what they are there for. Adam comes with me, as I am inclined to get very unsettled and at times distressed by the whole process. The hospital transport system is there for those who can’t get to their appointment any other way. Even being in a wheelchair, isn’t really a good enough reason, as every black taxi in the city can take wheelchairs. If you are hard up, well all you have to do is hand in the receipt, and the NHS will pay for it, it’s far cheaper than the cost of an ambulance. The unfortunate truth, of many people’s view of the NHS, is that they have either paid for it in their taxes, or that it’s free, and there to be used. Is it any wonder that the entire system is under stain.

According to the crews we have spoken to in the past few days, they are about to outsource the hospital transport side, to the red cross. I personally find that a little daunting, not that I expect them to be unable to get me out of the house or to the hospital on time, but I am concerned, just as the crews are if they will be up to the demands of the role. The NHS have years and years of experience, and even their systems are just creaking at the edges, but all the way through. We have lost count of the number of trips that have been canceled, or there haven’t even been any ambulances available, for the date of my appointment. So OK the red cross is huge, but is it big enough in Glasgow, to do the job? I know only time will tell, but it is so wrong that it is happening at all. The people of the UK have to start understanding what the NHS is there for, and how to use it, or we are going to loose all of it.


Please read my blog from 2 years ago today – 02/06/2014 – A factual conclusion

I went to bed last night feeling truly awful, it was one of those times that if I had laid down and died, I actually wouldn’t have been too surprised. I know to some that will sound like a shocking thing to have even thought and many will say why didn’t you call for help, well that is easy to answer, it happens frequently and thanks to a previous post, I know I am not alone. Last night thought I had more than just a feeling to go on, or the fact that I was feeling ill, all day I had put up with……

A major life change

I have found myself in the past few days wondering about something that I have never considered before. Those that know me well may have even seen it in my writing, as I know when I read it back, I feel it. I’m tired, tired in a way that I honestly don’t think that I have ever felt before. It isn’t fatigue or exhaustion, it’s a tiredness that consumes you, both physically and mentally, way beyond fatigue. Fatigue has never left me just sitting doing nothing, not thinking, not feeling just stopped and worse still, with no desire to even find a way to start again. It isn’t as though I haven’t tried to fight it, or even to subdue it, but when you really don’t have the true desire to fight, it is bound to fail. I once described fatigue as….

a tiredness that grips every cell of you and then takes your soul as well, the amount you sleep or the quality of it, quite simply doesn’t make the slightest difference and it drags you down and down until it is ready to let go. There is this maddening circle that you get caught up in, all you want, is sleep, to crawl into your bed pull the covers up as far as they will go and to block not just the world but your mind and body as well, but sleep changes nothing!

When I wrote that 18 months ago, I thought that I was describing the worst tiredness there was, but even then I still had one thing that was mine, my free will. I could always muster up the will to do things, if not the energy to carry them out, but now, that will is tired as well.

I don’t know what it is that has changed, or what the cause is, but I quite honestly don’t have anything to give right now. Before anyone pipes up with the usual suggestion of depression, well pipe down, it’s not. I’m not depressed, I just have this need to stop, to go with my body and to rest in ways that right now, I don’t. When I wrote yesterday about how everything is now stalled by this list of “What if’s”, what I didn’t really say, is that it really is everything, not just those extra things. It doesn’t seem to matter what it is I want or need to do, even something that is essential, like going to the toilet, that little voice saying “Really, you want to do this?”. It always chirps up, always has to be heard. In the past month, it has grown louder and more persistent and now, I feel I need to listen to it.

So I apologise to those who come to my site daily, knowing that they will find a fresh blog every day, but that may not be the case from now on. The time has come not to hang up my pen, but to let it at least have time to refill before I ask it to write again. I have been considering this for a while, while I pushed myself on, keeping to a rule I wrote for myself, that I had to write daily. Quite simply, it has all become too much and I need to be able to take time out, time to do nothing. It has been such a huge issue in my mind, so many things to consider as it means that I am going to have to change my routine, and that scares the hell out of me.

Routine has held me together now for 9 years. It has supplied me with a structure, a frame to my day that allows me to track where I am, where I should be and what I’m going to do next. Oddly the simplest thing to leave out of my routine is my blog. To those who read it, I know that isn’t the case, but the two-hour spell that it fills, is right in the middle of my day, as I always write one day ahead. So what you are reading now, was written yesterday. This early afternoon slot would be perfect for a lot of things, especially sleep. Having said all that, it still scares me, making such a change. At this very second, I am telling all of you this, but that doesn’t mean that I won’t write daily if I feel the need. What it does mean, is there may be the odd gap as well, if that is what my body says I must do on any individual day.

I guess that I have always known that this day would come around, that I would have to give in to the tiredness, that has been growing steadily over the years. I’ve lived with it for so long, that I don’t know what it would be like to be free of it, and no matter what I do, all it does is grow. All those others, tiredness, fatigue, and exhaustion, they all sit above it, this tiredness is the one that sits in your core, never relieved, never lifting and only growing, I so wish that I had another name to call it, but no matter how I have tried, what I have read or anything else, I can’t find one. It is as though, my health has slowly been eating away at my life energy, that why I say it is at my core. With every dip in my health, it has taken another chunk and now, what is left, just isn’t enough to take every day at the same pace. I am life tired, but that doesn’t mean I am tired of life. They are two very different things, that I am sure of.

If you follow me, well you’ll know when I have written something new, as you’ll receive a notification and if you miss me, for now at least, you will still find me daily on twitter. But there is one thing I will promise, for now, I will never be gone for more than two days, more likely or not, it will only be one at a time.


Please read my blog from 2 years ago today – 18/05/2014 – There is always more

I am setting out again on the trail of changing my smoking habits, I have smoked since I was 12 and then I was on 20 a day, rising to my worst of 80 a day. Smoking has been the one thing that was hit hard when I was made redundant, simply I just couldn’t afford it, so I bought out of part of my redundancy one of the early e-cigarettes, and hundreds of nicotine cartridges, well I only have 300 left, so I had to start making a new plan. It has taken my most of my spare time last week to find exactly what I wanted, my new higher voltage, higher volume, higher vapour e-cig is now on its way. Although I found the old one OK, I just never got……

It’s yet another one

At this very moment, I pondering on what has to be one of the biggest questions everyone has about their bodies when they have MS. No, not what caused it, but the one that has us questioning, often out loud, “where did that damned bruises come from”. I have had them appearing all over my body for years, mainly on my legs, but other places as well. This morning, I was sorting out my nebulizer when I spotted what I was initially sure was just a dirty mark on the inside of my wrist. When I looked closer, I saw straight away it wasn’t dirt at all, it was another bruise, actually, it was a rather large and dark bruise, that once again I have no idea how it happened.

I know bruises don’t really matter that much, but I honestly used to have so many on my legs at times, that I wore those 90 Denier black tights, not just because I liked them, but they hid them perfectly. I realised just like all of us, that it had to do with the ridiculous number of times that we walked into tables, desks and so on, it didn’t exactly take a genius to work that one out. At first, I just thought that I was somewhat clumsy and tried hard to put to one side, there were those odd ones that had an overriding question attached as I had no memory of walking into anything. My balance had been screwy for so many years, that it became a bit of a joke really, but inside I was worried about the missing memory. I even went to my doctor at one point because there were so many of them, I was worried I had a problem of veins collapsing or a some kind of blood disorder. It was, of course, another one of the things that my doctors just brushed off and sent me home feeling stupid. My eventual diagnosis of MS, made sense of it, I wasn’t forgetting, it was the fact that I wasn’t feeling, so there was nothing to remember.

I have to say that it has been quite a while now since I had a mystery bruise. Well, it’s been years since I walked anywhere other than in the house and in the last six months, not even there. I actually dared to think that my days of going “there’s another one” had ended, but clearly this morning proves that isn’t true. I know all to well that my sensations are screwed up, but I have to admit there is something just that bit scary about knowing you can hit yourself off something that hard, that it leaves a deep purple bruise, with no sensation what so ever, is scary. Even today, when I press on it, I can feel nothing, it isn’t tender or painful in any way. It has always left me wondering how badly I could actually injure myself and actually feel nothing? Even odder than that is the fact, that this is the same body that produces so much pain, that I frequently have to reach for my morphine boosters, just to be able to cope with it. I know, it’s just the mixed up nightmare that is MS, but I can’t help wondering, just what are our bodies really capable of?

If my doctors are right, I have had PRMS now for 34 years. There is no comparison between then and now, and in the past 15 years it has speeded it way to where I am today. I am no different from anyone else who is chronically ill, in the fact that I wish with all my heart, that I knew what will happen next, and how I will be just before it all ends. All though MS is horribly unpredictable, it’s not quite the same story with PRMS, there is one certainty that I live with and that is I will get worse, slowly, bit by bit, through every day that I live. If I am unlucky, it could all happen very suddenly, or be a mix of both, but I will get worse. I guess that’s why, the question that keeps running around in my head recently, is just what is the human body capable of? I can find loads of information on the symptoms of MS, but not one of those has answered my question of how bad can those symptoms be? It is almost as though there is this golden rule, that says don’t talk about it.

Even though I have met a couple of people many years ago, who I hope for their sakes, weren’t that far from the end, but seeing them, didn’t help me with what I wanted to know now. I couldn’t see how they felt inside those crippled bodies. I didn’t ask, but if I had, one of them at least, wouldn’t have been able to answer me. I have very mixed feelings about my future, and I guess like most of us, what I fear the most is the loss of mental ability, but very close behind it, is that question, how will it all feel? I don’t get the wall of silence, I don’t understand why no one wants to tell us and why they constantly hide behind that phrase, “no one knows as MS is unpredictable”. It may be unpredictable, but I’ve never asked for a day by day prediction, just the basics, the possible and the possibilities. Is that really asking the impossible? I don’t think so.

To this day, my COPD consultant is the only one who has said, that my PRMS is killing me and that it is highly likely, that my PRMS will stop me from breathing one day. Suffocation I can find information on, not pleasant, but we all have to go one way or another. So if my MS can cause spasms so tight they will crush my lungs or my airways, how tight can they crush other parts of me? How much pain can they cause? How badly can those mad sensations we all live with, become? Can pins and needles turn into swords and spikes? Or could my entire body become numb? If it does, will it bring that horrid pain that follows it everywhere? I just want to know.

Wow, it’s amazing what a bruise can do. I never knew all that was going to come out today, but it has, so maybe, it’s time that it did.


Please read my blog from 2 years ago today – 16/05/2014 – It’s more than just time

I was shocked last night when Adam came home and started for the third day in a row to tell me about a scheme he has signed up to at work, what shocked me was it now turns out that in the whole or the admin and records department of the hospital he works in, he is the only person to volunteer. A few days ago an email had gone out looking for people to mentor a young person who had never had a job since they left school, they had to have been unemployed for at least six months and all of it would be done during working hours. Adam decided that he would like to help and…..

Sunshine for Adam

I had the most bizarre and wonderful conversation with Adam last night. It was 8 pm and I had joined him in the kitchen while he sorted out my medications for me and I sat using my inhaler. As I was sorting out the nebulizer I took what was the first opportunity away from the noise of the TV to tell him my discoveries of yesterday. In the past when I have suggested that it might be time to find out what help social services might offer, he has always taken it as some sort of slight on his ability to do everything that I no longer can, but I knew that I had to try again. This time instead of going over what help I feel we could do with, I put it in a totally different way. I explained that they would do an assessment, not dissimilar to the one we had the other week with the PIP assessor, then they would tell us what help we could be offered. At that point he stopped me, somehow he thought that that was part of the PIP assessment. He didn’t realise that they were totally separate and that getting one, doesn’t mean you can’t get the other, nor does it affect the other in any way what so ever. With that error corrected, I discovered another one, that I again didn’t even know existed, and the stress that it was and has been causing him for years.

Adam believed that if my health suddenly dipped and I needed someone here to look after me, he would instantly have to stop working. He saw his future as nothing other than having to care for me 24/7, 365 days a year. He literally crumpled onto the kitchen counter, as I told him that I could have someone here, paid for by the Scottish Government to shower me, make my meals and anything else I needed as far as personal care, unfortunately not the housework, but anything that went under the brackets of care, when he wasn’t here, and even when he was. It was like seeing a weight being lifted off him. He stood there, head down on his hands, slowly shaking his head, and with each shake, the pressure that he has been living with, lifted. The assessment would determine how much per week they would give us, up to I think it said was a total of £170 per week. The money can be either paid to us, so we can employ whoever we want, or, they will arrange the care and make the payments. He asked me several times if I was sure, and then just stood there looking at me and going over what he had thought again. I never realised just what was going around in his head, or that he hadn’t even thought of checking it out online. As you know, I have been searching for whatever it was that was pushing him down, for ages now, I think at last that I have found it. Every single day for god knows how long, he has been waiting for my health to attack me, and for him to suddenly be locked in this house, just as I am.

It was one of those conversations where his relief was so clear that he suddenly didn’t seem to want to stop talking. He started talking about how he knew some retired nurses who now took on this sort of care, and how he was sure that we would be able to find those who understand the fear that runs uncontrollably through my head. It was almost as though my putting his fears to rest, meant that he was suddenly free and was seeing possibilities he hadn’t even dreamt of. I hate the idea that he felt trapped with what were unfounded fears for so long. Releasing them was like an added shaft of sunshine had entered our home.

I knew that his fears lifted a little when I decided that my walking days were over. That day that I asked him to bring my wheelchair out of the cupboard and give it a clean, so I could use it daily in the house, I saw things change, even more so, when I said I was going to have grab rails fitted in the bathroom. I’m not an idiot, yes, I knew that from the day I first fell badly, that he had feared I would hurt myself so badly that I would land up in the hospital. I knew that he was on the side of the OT and wanted me to put all the crystal that our house is filled with away, he had this vision of my falling onto one of my displays and shredding myself on the glass. I knew that the day I fell and found that I could no longer get up, that it triggered the image of his Grandmother, who he found after 36 hours on the floor of her house. So yes, I knew his fears, what I didn’t know, was that the wheelchair and grab rails hadn’t removed it, he still fears I will fall. It doesn’t matter what changes I make, he lives his life in fear of what will happen to me next. He almost split with the smile when I mentioned someone else cooking my lunch, he knows that at times, despite all the burns and my saying no more, sometimes I do. I doubt that even if I had someone here when he wasn’t, he would still worry, that is him and I’ll never change that, but hopefully, I think I put just a dent in his fears.

So today, well today, I am going to look deeper and see if I can find the details of who we need to talk to, who can help set up this assessment. What we are hoping for just now, is exactly what I said here back in January, to get all the paperwork out of the way and to take the help I need right now, but more than that, to have the opening so when things do progress, we know just who to call. As I said to Adam last night, my health has dipped dramatically in the past six months, if it continues this way, in six months time, I will probably need not just what I can think of now, but more.

I so wish that I had known that Adam was carrying all that around with him. To be honest, that was the last thing that I would have thought of. I was so sure that he was just finding the things he has to deal with now, not the future that was the problem. At first, I couldn’t understand why he hadn’t spoken to me, but when I thought about it, he quite honestly didn’t think there were any other options or any possible alternatives. I get the impression that he felt that as he wasn’t earning masses of money, that meant he couldn’t pay someone to care for me, so logically, it could only be him. I now understand that bit more of his world.

It doesn’t matter how close you are, or how much you love each other, none of us ever talk about those things we believe can’t be changed. Why would you? All the talking in the world won’t make you a foot taller, or three sizes smaller in dress size, so why should it change anything else that is unchangeable. When we perceive that something is what it is, we tell ourselves we just have to live with it. If this has shown me anything, whatever it is we fear, we all really should talk about it, regardless how stupid it seems. I don’t know how long Adam has been living with this extra stress, I would guess that it is more likely to be years rather than months. At least we have made a start, we have the source and I just hope, that we can now, also obtain the answers.


Please read my blog from 2 years ago today – 13/05/2014 – Quack quack

A few weeks ago, someone, I knew from twitter asked if I would be interested in their own personal work they were doing on curing different illnesses, it is usually the type of question that I would straight away thank them for thinking of me, but no thank you. Why I said that I would be interested in reading their suggestions I don’t know, but I gave them one of my email addresses and waited to see what arrived. I had made them a promise not to discuss the details and as I don’t break promises I won’t be giving you the details here or anywhere else, but I felt I had to write something about it as I found myself just a little worried not by what they suggested……

Looks hurt

One of the most common things I hear is that chronic illness is cruel. I totally agree with that statement, but it is always in reference to the major things, the things everyone knows about. To me, the cruelest things that it does to us, are the ones most people don’t even know exist, like the subject I chose for yesterdays post. It isn’t the symptoms, it’s more the side effects if you like, that normally quietly hurt us the most. As on top of all those horrors, they present to us in lists, are things that present themselves firstly and often only, to us. I had read a post from someone else about a week ago, sorry if it was you that wrote it, but I can’t remember who you are. Within that post, they had noted that their hands were looking aged. So I did what we all would, I looked at my own hands. To my horror, they looked as though they belong to someone at least 10 to 15 years older than I am. Normally, I wouldn’t look at my hands unless they were causing me pain or one of those odd sensations, that we all know about but have no reason. There they were, two aged hands, with skin that looked almost scaly and wrinkled, were there right in front of me. I held my left hand up to the light and there was no denial, it was the hand or an old woman and worse still, it was quite firmly attached to me. I pinched an inch of skin across the back of my hand, then let go, it did snap back to its normal position, instead, it sort of slowly morphed into the space it covered. My hands are old. Of course, that leads on to just one question, does that mean I am old? No, it doesn’t. Well, I don’t think I am, I recently turned 55, that isn’t old in my book.

It was about a year ago, that I first thought that I was heading into premature aging. There were odd things that I had noticed back then, not just the way I now walked, but there was the aura of age when I looked in the mirror. At the time, I wrote a post, which of course, I can’t find now. I had done some checking on the web and I had found that it seems to be a somewhat normal thing to happen to a lot of us who live with chronic illness. When I wrote that post, I was mainly writing about the fact that I felt that my life was that of someone so much older than myself. In fact, I felt that I was no better off than many people in their late 80’s and 90’s, so finding that my hands are doing their best to reach that age at speed, is distressing, but expected. Just because I am housebound doesn’t mean that I don’t care about how I look, I care now, just as much as I did when I was 30. But there are no two ways about it, my health, the medications I throw down my throat daily, are now taking their toll, and not just on my hands. The bulk of what I care to ignore is hidden beneath the loose clothing that I wear, but without feeling stupid and wearing both gloves and a balaclava, I can’t hide the rest. A lot of people would quite wrongly translate the fact that I don’t wear makeup as someone who has either given up, or is depressed. Well, I for one can say that that, is so far from the truth.

The facts are quite simple. I don’t have the energy to spend time in front of a mirror trying to draw lines under your eyes, with hands that shake so much, that that line would be a squiggle. My eyesight in my right eye is close to useless, so when it comes to eyeshadow, my right eye will look great, my left, so far from it that it was often quite comical. Being a perfectionist, if my make up was anything less, it meant that I just took it off again. There is only so many times you find yourself in that position before, you quite simply stop trying. It quite simply isn’t worth it. Not just because of what I have just told you, but I have so many things these days that I can’t do, being reminded of another one daily due to something as unimportant as makeup, is something I really don’t need. Just as I have given up cooking, not just for my own safety, but for everyone who lives in our block, doesn’t mean I’m depressed, nor does stopping wearing makeup. I wish I could get my mind around that odd connection between depression and makeup, that far too many people seem to have. If I’d given up, I wouldn’t cleanse and moisturise my face every day, in an attempt to hold off some parts of this horrid ageing process. To be honest, if I had the money and if I could find a plastic surgeon mad enough to give me an anaesthetic, I would without a doubt have the full range of operations available, to remove every sign of ageing there is.

Just because we are ill, doesn’t mean we don’t care, I care deeply, but what can I do about it? Nothing. If anything is depressing, it’s that. Seeing yourself slowly falling to pieces and turning into something you never thought you would see, would pull anyone down. It is, though, like everything else in our lives, we have to either learn to ignore it, or to live with it. I suppose that it isn’t really that surprising that this is happening now. My PRMS has stepped up a gear, I have less energy, in fact, I have less everything than I had just even a year ago, so to find I am ageing faster as well, should really be something I should have equally expected. I guess it’s like everything else, just because I was aware of the possibility, I had it marked down as something else that happened to other people. Well, we all have to have a little hope, but that hope has run out on this one as well. It would be really nice if just for once, that hope would win out. Chronic illness is cruel, but so can life be, it’s up to us, though, just how we are affected by that cruelty. I have got through so much that I doubt this is the one that going to get the better of me, old or not, my hands still work, well, sort of, and as long as they do what I need them to, I can turn a blind eye, to how they look, for now.


Please read my blog from 2 years ago today – 05/05/2014 – That old issue of money

Once again my legs are really painful this morning, I woke as I often do for some reason with my right foot not in the bed, but on the ground. Why I keep doing this I don’t know, but I am now guessing that when I am asleep I somehow don’t have the strength to pull it back in under the covers, as often it is freezing cold and painful when I wake. It only started happening a couple of years ago, never in my life have I been aware of it before and I really don’t think that for some mad reason, my body has suddenly decided it’s a good place to put it. That might explain some of the pain in that leg, but it has no bearing on the other one, which was comfortably tucked up and warm all night. I have to admit the whole house is cold today, the temperature dropped suddenly on Thursday and since them, well there has been little improvement, I refuse to switch the heating back on, as it is now far enough into the year to not be spending…..