It just keeps coming

When you live with a body that never gets things right, well, eventually, nothing ever surprises you. Doing something incorrectly is as second nature to my body, as breathing is.

If you live in Scotland and you are aged over 50, every two years they send you out a bowel cancer test kit. All you have to do is supply a smear of your stools, from three separate dates within a ten day period, then post it back to them. It’s that simple and free, so to not do it, seems rather silly. I have to admit that I didn’t do the first one when it arrived, as it arrived on my 50th birthday, not exactly something that filled me with joy, in fact, I put it in the bin. Well, I already knew without someone rubbing it in, just how old I had become. Three weeks ago, my third test kit arrived and I once more set out to comply with their wishes. It all sounds really easy and it is, but when you have problems both with twisting your body and with your dexterity, well, it adds a new level of complexity to the whole thing. Once complete, I put it back in it’s prepaid envelope and asked Adam to post it, then set about life as always, and as always, forgetting all about it.

On Thursday morning Adam opened the post, he’s on holiday again this week, as he had more time off to take, to use up his annual leave before April. Amongst the mail was a letter for me, they had found blood in my sample. I knew there can be a lot of reasons for that and what they found was so tiny, that I’ve never seen the slightest sign of it, but it meant that I had to do the test all over again. Unfortunately, I am in the position that I can rule out two of the most come reasons, I don’t have piles or haemorrhoids. How can I be so sure? Simple, I have an internal examination from the district nurses when they give me my enema, that has now been three times a week, for nearly two years. They have never found anything, and I have never felt any pain. So when they say that there can be many reasons for blood being there, I can get rid of the two most likely ones, without even thinking about it.

I can only think that it is because I am so used to my body doing things that it shouldn’t, that I find myself in an odd position, I’m not actually worried about it at all. I wouldn’t be human if I wasn’t slightly concerned but I’m not scared in any way. In fact, I am more worried about the possibility that I may have to have yet another endoscope, rather than what it might even find. For me, it has to be the worst process that I have ever had to go through, not so much the endoscope itself, but the preparation that you have to go through, the day before. I have had three endoscope investigations, all well in the past and I really don’t understand how anyone, actually drinks the two litres of that disgusting stuff they give you to clean out your insides. Not once have I managed to drink it all. How anyone could possibly drink two litres of anything in under two hours, totally bemuses me. It is for that reason alone, that I have found myself praying that no blood shows up in this second test kit.

I may be unworried, but from the second that Adam read the letter out to me, I could hear and see that he doesn’t share my calmness. Despite the fact that he has lived through every single little trauma that my life brings with it for the past 19 years, he has never become any better at putting it aside until there is something proven to worry about. I’m quite sure that he worries more about me than I do on any given day, but when something happens like this, I watch it take its toll on him over and over. In fact, I have always believed that the cruellest things that chronic illness does, isn’t to us who have it, but it’s on those who love us. We know how bad the pain truly is, how difficult daily life is, and every single thing that we feel or happens to us, but they don’t. All they have is their imagination and I know myself, just how dangerous a good imagination is.

I don’t think there is a single illness on this planet, that I haven’t imagined that I may have had at one time or another. When your doctors can’t tell you what is wrong with you, well imagination is the only thing that we have. It took them nearly 20 years to actually pin down that I have PRMS, so I know what it’s like to watch a body do things that there is no explanation for, but even back then, I knew its extent, if not its cause. I still remember what it was like to live like that, and I can see clearly its effect on Adam. Worse still, it doesn’t matter what I say or how I try to show him there is nothing to worry about, he still worries. Reading that letter tore him apart, and despite his attempts to show a calm face, I saw his pain and concern as he read it to me.

I thought that in time, he would see that worry did nothing but make him feel bad and the things that he worried about, never proved themselves to be bad as he thought. Time seems to have taught him nothing, or maybe, he just has a way of seeing only the worst possibility in front of him. Either way, there is nothing I seem to be able to do or say, to calm him. It just isn’t right, that my health should cause him such pain.


Please read my blog from 2 years ago today – 16/03/2015 – Ups and downs

Today is turning into a nightmare and one that means I will be keeping this post short. Yesterday afternoon I suddenly started having problems with my broadband, it kept dropping out making scheduling all my tweets pure frustration as one second it was fine, the next I had no connection at all. When I go up……

Avoiding the gaps

I used to find this so easy, I would just sit down here and start to write. The words would flow and I never felt as though I was even thinking, it was a flow of words from where I had little idea, they were just there, they were always there. In the past week, I have sat here three times and tried to write and on each occasion, there has been either nothing or just a rant, about the building work going on downstairs. As much as that has dominated my life for the past three weeks, writing about it wouldn’t really supply anyone with something of interest to read. It wasn’t until yesterday, that I started to understand why I am suddenly finding all of this so hard.

I know that I have often written about the issues that I have had over the years with both my memory and the problems that it causes when I try to talk. So far, I have been able to think with amazing clarity, my problem has been when that thought has to be turned into either action or spoken words. Millions of trips into rooms with no remembered reason for even going there, and even more hours filled with stutters or silences, when words totally vanished on me. Yet, I could both write and think with a fluidity that never let me down. How? I never managed to work that one out fully, it just was, and I so loved that it was. It allowed me an escape into normality, the way I could see existed for others. It appears that that has come, or is coming to an end. I can no longer even think clearly, almost all my thoughts are now stuttered and paused with gaps where I can’t find the next word. Even that narrative that we all have going on in our heads, has become like any other conversation.

For a long time, I thought the reason for the difference was that I wasn’t under any pressure when writing or just thinking to myself. I didn’t have to be understood or to think quickly as we all are when talking to another. When writing, there was no one there at that second who would read my words, nor was there someone inside my head to see what was going on there. Yet now, even when in that state of no pressure, I keep falling into a muddled spiral that gets me absolutely nowhere. It hasn’t stopped me trying, but trying is never enough, we all aim to succeed and when we don’t, well the pressure suddenly appears, all applied by ourselves. The more it went wrong, the worse it got, until I found myself with no memory of what I set out to write about in the first place.

It took me a while to work out why I could manage to write about the builders with a greater ease than anything else. It was simple, I could hear little else other than them, and their constant noise was like a dictation machine, feeding the words to my fingers. With any other subject, there were those nagging silences, the gaps that required me to reread, rethink and try again, just as I am now. It doesn’t seem to matter how rested I am, how relaxed or how silent the monsters in the flat below are, my brain just isn’t working the way it did, just a few months ago. The only time I am free is when I’m asleep and trust me, I am also getting far more of that than I ever did before. In fact, even on the days when I have my alarm set for 10 am, I switch off the alarm and struggle to get up, often drifting back to sleep. No one needs more than 13 hours sleep a day, no one except me.

On the good side, I, at last, have an appointment with my neurologist, I will see him on the 14th of this month. On the bad side, that means another trip out in an ambulance and all that brings with it. My health has changed so much since I have last seen him, well it would over ten years,  but the worst of the changes have taken place in the last 18 months. Because I keep myself constantly up to date with what is happening in the MS world, I have a horrid feeling that he will not be able to help in any way. At the best, he will send me for updated tests and possibly change or add to some of my meds. At the worst, he will do his normal, smile and ask me if I would like to come back and see him in a year. To be honest, I quite simply want to put my mind at rest over some of the things that have become part of my life, like the issues I now have with actually being awake.

Also on the good side, I am totally in love with my Charcoal toothbrush and the Charcoal tooth powder. The difference that the brush made was clear to me within a couple of days. My whole mouth feels cleaner and teeth feel squeaky clean at all times just as though I am seeing a hygienist every day. When the powder arrived a week later, I started using it after lunch every day. It’s not quite a week yet that I have been using it, but I can clearly see a difference already. Even stains that have been there for years are slowly disappearing and my teeth are without a doubt, whiter. So if you haven’t yet, go and buy both, they are amazing.

I’m sorry, my brain has had more than enough for now. This has taken three hours of writing with two half hour breaks and one of over 13. If my brain doesn’t return, which is something I hope it will do, I am going to have to find a new way of writing, as I don’t want to give this up. I see it as an important record of how this illness really affects me and I don’t care what happens, I’m going to keep it going.


Please read my blog from 2 years ago today – 09/02/2015 – It’s time for change

I woke last night once again with intense pain in my back, this time it was so bad that I had to reach for my booster pills, it’s the first time that back pain has made me do such a thing. I know that it is stupid and that they were prescribed for dealing with pain, but I have them linked so tightly to my PRMS and COPD…..

The problem with green penguins

I woke on Sunday morning still with a painful jaw and mouth coated in speckles of dry blood and feeling a tiredness that I both knew and expected, but otherwise fine. I might be minus another tooth, but it was without a doubt one of the easiest and least painful extraction I have ever had. It wasn’t that the dentist used any new or different way of removing my tooth, but I like many people have a fear of such a process, without a doubt, being at home, relaxed and at ease, made a huge difference. It might have been easier for me, but my poor dentist found himself fighting with a tooth like neither he or his assistant had ever seen before. Thanks to a problem I had with my wisdom teeth, long since gone, the lower half of the root was at a 90-degree angle to the rest of it. The pair of them kept staring at it and studying it with awe, I just wanted them to put it away.

One of the roots did break at the point of the angle and is still sitting in my gum. They assured me, that this isn’t a problem at all, and that it will either just stay there, or slowly bring itself to the surface. Just to be sure nothing goes wrong, I am on a precautionary round of antibiotics and I also have an antiseptic mouthwash to use for a week. He is also coming to see me again in three mouths time, just to check all is well. I did get around to asking what would happen if I needed a filling or any process requiring care he could supply in my home, as I expected, the answer would be a referral to the dental hospital, but after his care over the last two weeks, I would recommend him to any and everyone.

He didn’t just arrive with the intent of removing my tooth, but he was also bearing a gift, one he did appologise for as it bore a green penguin on the handle. He had brought me a new toothbrush, one he would normally give to a child. From the staining and so on, on my teeth, he had noted that I was clearly having issues using a normal adult brush. I thought he was joking, but he was so sure that I would find it easier, I did try it later that day. He was right. It hadn’t crossed my mind that my dexterity could cause issues with cleaning my teeth, but it is. The small head means I can now with ease manage to clean all of my teeth with ease. I would recommend that anyone with dexterity problems buys a child brush and just tries it, brushes are cheap, our teeth aren’t. I have to admit though, I’m not too taken with the green penguin.

Having a tooth pulled is surprisingly something that causes raised fatigue. He did warn me, but I just didn’t see it coming, but it did. The next two days I found myself with a raised desire to sleep but still with enough energy to go on an internet search for a child’s toothbrush, that wasn’t a horrid colour or had some kind of animal embedded in the handle. Simple things like a good range of toothbrushes are actually hard to find online. Yes, you can find cheap multipacks of unknown brands and vivid colours that would clash with anything, but not being able to get to a shop, it’s hard to find what you want. On the good side, you come across things you have never seen or heard of before. Hence my most recent and unusual purchase. I have bought a child size charcoal toothbrush. Its handle is made of bamboo, so therefore unlike the millions of plastic ones out there, it’s biodegradable, but the even odder feature, are the brushes that are black and impregnated with charcoal.

Despite being well aware of the properties of charcoal and that the ancients used it to clean their teeth, I never once thought of using it on mine. I have decided, despite the fact that it cost about double what I would normally be happy to pay, to buy one. Why? Well, it’s simple, my teeth are now horribly brittle and difficult to clean, with stable cracks and so on, the makers (including some of the major brands you would know, but only on sale in the orient) say they are more effective against both plaque and staining. Some of the bristles are also incredibly fine, which means they get between your teeth and for most people, means no more flossing, something I simply can’t do. It sounds like a win-win buy to me and truly worth trying at least once. If you want, you can now actually buy charcoal toothpaste, which I am thinking about, just to use once a week.

It’s now Tuesday, a whole four days after the extraction and my mouth although still slightly swollen and tender, is fine, I’m still finding myself more tired than I should be. Our bodies despite being amazing, react in the weirdest ways at times. I know that my PRMS is playing a huge part but it was just a tooth, not a limb. It wasn’t as though I lost a lot of blood, in fact, the dentist commented that I bled incredibly little, to the point that when he handed me a gaze strip to bite down on, it came out almost clean. He left me another one just in case, but he didn’t expect I would need it. I though had to have my shower that afternoon and I knew before I stepped into it, that the heat would cause a rush, just as it did. So blood loss, couldn’t be playing a part, just in case, some might think of that one. I guess it’s just the normal, I live inside a screwed up form that does exactly whatever it wants, without any consideration for me.


Please read my blog from 2 years ago today – 25/01/2015 – Hidden blessings

Exhaustion is pulling on me badly today, it has that all too well-known feeling that I am being dragged down into a need to sleep so strong that it’s hard to ignore. Since I wrote the post on fatigue the other day, I realised that I am as guilty as a million other people with chronic illness of just saying “I’m tired” or……

Here, there and nowhere

I don’t feel as though I have stopped for a second over the past week, others might say I have done nothing but sit on my backside, but I beg to differ.

It was Tuesday evening and I was passing the heater in the hall, the one the heats our entire home, and somewhere inside me, I realised there was a something wrong. I stopped. held out my left hand and touched it, the majority of it was cold. The house felt as though it was around the same temperature that it had been for days, which hasn’t been exactly warm. I have constantly been telling Adam that I was cold and I even had him double up the duvets so that it was at it’s designed winter weight, something we have never used before. The result wasn’t just that I was warm in bed, but even Adam noticed that I suddenly stopped being up several times during the night. I may have been sleeping better, but that didn’t help at all when it came to the fact I was still cold during the day.

If you own a storage heater, you will know that it stores up the heat at night and puts it out during the day. A simple system, but what I discovered, just part of it warm, it made no sense at all. Normally they are roasting hot, or simply not working, not a subtle system, but one that works well. We did the only thing we could do outside normal working hours, change the fuse and hope for a miracle. We didn’t get one. The next morning the heater was only warm in the center strip, and the rest was cold. I have been through trying to get a storage heater fixed in the past and it wasn’t funny the last time.

When you start from the simplest point that I hate talking on the phone, add in I hate talking to strangers, plus I really don’t have a clue when it comes to the cost of doing things like fixing a heater, well, you can imagine how wound up I was well before I even started. In fact, I kept doing things, anything that I could just to put it off for another few minutes, even just one. By the time the District nurse arrived, I was as tight as a knot and she could see it. I stuttered my way through what had happened and how I felt as though the last few months, all I have done was spend loads of money, on things that were totally unexpected. Talking to someone friendly really helped, and once she had gone, I set too on phase one, my online search. I found 5 companies, I plucked up the courage and phoned the first, a voice said they no longer do storage heaters and hung up before I could ask if they could recommend someone. The second, I left a message for and never heard back from. The next two I emailed and the final one was answered by a friendly jovial man who was happy to come to the house the next morning.

Wednesday was high on the extra stress and Thursday followed with not just stress, but the exertion of my having to dash back and forward to answer the doorbell, first off, a chemist delivery, then for the postman and finally for the repairman. It may just be a doorbell, but each trip means having to transition from my desk chair to my wheelchair and in reverse when I eventually return. My stress peaked when I found myself having to work out if I could trust this total stranger with £100 to buy the parts needed, he seemed nice enough, but how do you really know. I trusted my gut. The relief of his return didn’t last long, as it was followed by the disappointment of him finding that the heater was too hot, to complete all the work and that he would need to come back the next day. Everything was disconnected with the heavy threat of no heat what so ever, it was going to be a cold 24 hours. Once he was gone, I started to relax a little, that was until Adam came home to make me lunch and reminded me that the dentist was coming that afternoon. I knew exactly what he would be doing and that it would cause me no pain, but there is this thing in the back of my head that associated dentist with just that, and it’s hard to break. Up went the stress levels once more.

I no longer have that rough broken tooth, that constantly caught on the inside of my cheek, which is good, but he is returning on Saturday afternoon, to remove the half tooth I have at the back of my mouth. There goes the plan I had of dying my hair on Saturday, I guess I’m grey for that bit longer.

Friday morning arrived with a chill that hit the second I removed the bed covers. There was only one choice, to spend even more money and switch on both the fire and the oven at full blast. There was no way that I was going to survive a whole day with a house that was that cold. At 10 am the doorbell rang, about the time the District nurse normally calls, so I thought little of it when I went to answer it, other than she was just that little bit early. It wasn’t her, it was the electrician, two hours early. What could I do, other than let him in and panic? There was one thing for sure, I wasn’t letting him go as if I did, I might have to go until Monday before he could return. The other thing I was equally sure about, that I couldn’t have an enema with this guy in the hallway between my bedroom and bathroom. Somehow, I had to stop the nurse coming and I had to do it quick. Of course, I didn’t have their phone number on hand, so all I could do was to call my doctors and go from there. It was one of these wonderful trials, one number to another then another and even when I spoke to someone, they called me back 10 minutes later to confirm that they would call that afternoon instead. I hate the whole idea of putting busy people like them off, but what else could I do, for that reason, I guess, my stress levels didn’t fall, they stayed high even after the heater was once more together and I could look forward to waking to a warm home again, but not until tomorrow.

You wouldn’t believe that something as simple as a heater could cause so much hassle. It’s not really any great surprise that right now, I feel as though I could sleep for a week, if not longer. I know that to most people, this would have been nothing but an annoyingly stupid set of events, but it has pushed me beyond limits that I haven’t passed in a long time. Even what should have been the peace in between each issue was no peace for me at all, as the workmen downstairs are still bringing down walls and making noise that is beyond funny, it’s been three weeks now they have been working, and I guess they are nowhere near done. Is it too much to ask for a little peace, a chance to settle and just be me? All I hope is that tomorrow although the dentist, followed by my carer will be here, will bring me just that bit of calm that I have been missing all week. The simplest of life issues, are all always translated as pain, and for this week, I’ve had enough.


Please read my blog from 2 years ago today – 21/01/2015 Removing walls

About a week ago I said that I had realised that maybe I should be writing a bit more about the effects of my illness on my relationships, especially the most important one between Adam and I, when I wrote that I didn’t realise just how front and center of every second of my waking day our relationship was……

Down sizing required

At last, Christmas is over, done and dusted for another year. It’s a time of year that is hard to handle when you’ve lost your health so completely. Inside you want to have everything as perfect as those long past, but you know it’s totally impossible to get anywhere close. For me, the hardest thing this year was the trail of relatives. Don’t get me wrong, it was lovely to see them, especially as we seldom see them at any other time, but getting them to totally understand that limited energy, means limited ability to even just sit and listen to their chatter, is hard. My daughter Teressa and her husband John were here for two days and I got through their two five-hour visits tired but still feeling alive. Yet, having Adams Mother, sister, and his sister’s girlfriend here for four hours, drained me totally. I don’t know if it was the fact that I had never met Amy or that Alison and Jenifer rarely come round to call, but those four hours, in one fell swoop, took as much as the two visits from Teressa and John did, and more.

Both visits had been organised in advance, but despite that, I found myself confused and anxious about the finer details. I knew Teressa and John would be here for at least one meal, if not two and I didn’t want to have the expense of their last visit when we landed up ordering Chinese. It was nice but I honestly can’t afford another £80 bill. I don’t know how many times I tweaked the Asda shopping list before time ran out and I had to go with what was there. I had gone for a simple array of cold meats, pates, smoked salmon, and pickles, to be served with bread and crackers. If they were to be here the next day as well, well toast and pate would have to do. I have never before gotten myself as wound up about people coming to visit as I did this time. I guess, I am more aware of my health these days than I have ever done before, especially when it comes to my memory.

It was so good to have my daughter here again. There is something about our bond, that nothing can get in the way of, not time, not distance, not anything. We as always were instantly connected and leaving the two boys trying to get a word in edgewise, and trying to work out, what we were finding quite so funny, or possibly so intense. It has often been said that we are two parts of the same person, not just as we look alike, but our sense of humor and inflections of voice are almost identical. She though has the luck of being both healthy and employed in a job that financially means life can be more than comfortably enjoyable. We did though have our silences, they always felt as though they were down to me, as my brain kept going blank and I could find nothing to say what so ever. It’s not as though my life is filled with exciting things to talk about. No matter what I do or how I try, being housebound really does have it’s limitations. Despite the silence those few hours passed with ease, my fatigue was limited, but clearly there. In some ways, I think the silence allowed me to recover, to recenter and move forwards at my pace.

The visit from Adams family was the total opposite for me. The hardest part was trying to listen to their chatter, well it was his turn to be at ease and mine to be the outsider, part of, but not truly connected. The four of them were totally connected and I was lost on the edges, occasionally connecting but then lost again. I could feel that Adam didn’t want them to leave when I called it a day, but I had already gone past the three hours agreed on and I honestly couldn’t take any more. If final proof were needed, it came that night when I slept for 14 hours and Adam still had problems waking me. My alarm had been sounding for 10 minutes when he decided that he too should join in. but not even shaking me or his voice found it’s way through at first. When I did wake, all I wanted was to be left alone to sleep again. The three of them all together had drained me to a point I hadn’t expected, especially as all we did was talk.

You don’t really feel or notice your health changing. You can’t really measure it when you have been ill for so many years, that ill, is quite simply our life. You forget when one day runs into another so seamlessly that even their identity is gone, just what normal life really is and just what it really does to us. Two simple family gatherings, the sort of thing most people do every week, not full blown parties, not huge cooking marathons, just people in my home sitting talking, yet they were enough to drain what energy I could find. It’s days like these that show me just how ill I have really become. I never understood those stupid rules that hospitals have of just two visitors to every bed. They made no sense at all. How can it really make the slightest difference other than to the number of chairs that they have? Well, now I understand. Now I get the real reason. Now I see just how simply being surrounded by the healthy can truly impact on our health.

I wouldn’t change those three days as they were both important and fun, but now I have a much deeper understanding of my health, of just where I am on that scale of healthy. I knew already that my ability to be amongst people was diminishing, thanks to my carer and the district nurses, As much as I need them and even to some extent enjoy being with them, I knew that time limits were very much needed. Now, I actually believe that a second rule is needed. the rule of two at a time may well be the way of the future. Adams family proved what I thought already, that my brain quite simply can’t keep up and fatigue becomes a huge issue. We may love our families, but without trying to sound cruel or nasty, small doses has become a necessity.


Please read my blog from 2 years ago today – Right or wrong

I found myself in the middle of the night just sitting on the edge of my bed, I had woken up for no reason I could find and for equally no reason I decided I needed to sit up, I was sat there still wearing my earplugs…..