A day to delete

I don’t know what it is about Sundays, but without fail, they are always days when I seem to land up chasing the clock. I don’t think it was made any better yesterday by the fact that the clock went forwards last night, for daylight saving time. No, I didn’t sleep an extra hour by forgetting to change the alarm clock, although yes, we did forget, somehow I woke at a time that meant I was just 15 minutes late. When I woke, I actually thought that I was starting my day early and that, I think, is where my trouble began. As I have said before, time is now a concept that I find hard to work with. Seeing the time saying 7:45 am, and that the bathroom clock agreed with it, I believed that to be the correct time, confusion started once I reached the living room and turned on my PC, it told me that it was 8:58 am. That was something my brain just couldn’t handle and I went into a total spin. As I said, Sundays are odd for me normally, but at that point I was already in the midst of a mental bedlam. I was desperately checking everything, all the clocks agreed with my alarm, but my PC and the TV said differently. Once my brain flips, logic has nothing to do with reality, and anyway reality is in some other dimension. I knew the time was due to be changed, but I just couldn’t get to grips with what was happening.

Once bedlam appears, it is incredibly hard to escape it. Even two hours later, I was still double checking everything, the result being that I just kept working myself into a frenzy and time, the real time was ticking away from me. Before I knew it, I was an hour behind on my daily routine and struggling with everything that I was trying to complete. I knew it really didn’t matter and that in the bigger scale of life, it was totally irrelevant, but telling my brain that, just wasn’t happening. The tiniest things can set off a train of reaction just like this, yesterday it was time, the one before was caused by opening a drawer in the kitchen to find the spoons were in the wrong order. Anything that is not as it should be, or is unfathomable at that second, can totally destroy my entire day. Once triggered, even if I correct the problem, it isn’t enough, I will without a doubt, double check that it is still correct the next time I am passing that way. On the surface, I know that some will think that it is a form of OCD, but it’s not. As long as I think that everything is where it should be, then my world is fine. I don’t go looking for things that are wrong, but if I find them, well then, they have to be fixed.

It took until after lunchtime for me to settle to the time issue. I was actually having lunch when I worked it out the root of my unsettled state. It wasn’t so much that the time had changed, as the fact that the clocks hadn’t been. I knew that in every single room of the flat, there was something wrong and as they are mainly wall clocks, I couldn’t fix them. As soon as Adam did, I settled again and normality returned. I had still lost over an hour, but hey, it was Sunday, I always land up running behind on a Sunday, so nothing new there then.

I can’t help wondering if there is some kind of lesion activity going on at the moment. There are just so many things happening altogether, which yes I’ve had issues with on and off, but they all feel more on than off right now. I am very aware of feeling distressed over virtually nothing, my concentration levels are low and my frustration rate is high over everything, my tremors have been going mad and the list just goes on. Just read the last three weeks posts, and I’m sure they are all there. Annoyingly, it is now also managing to get in the way of one of the things I enjoy the most, this, writing.

I used to write a post in under an hour, now, it can take more than double that, this one, so far has taken nearly three. I can’t hold my train of thought and I have to keep rereading, correcting and at times, deleting large sections and starting again. Add in fingers that somehow find keys that weren’t intended, a new ability to make up nonexistent words and the whole thing is taking longer and longer. I’m sure many have noticed that most of my posts have been shorter than they used to be. I would literally do nothing else if I were to achieve my once standard 7000 character. The normality that I desperately need is now being pulled apart, by the very brain that requires it. The normal flow of life is frequently severely disrupted. And for those reasons, I am going to have to stop writing today, before I do something totally nutty, like deleting the whole thing.


Please read my blog from 2 years ago today – 28/03/2014 – The future 

I woke this morning with the alarm sounding rather than pain anywhere, I’m not saying that the pain has gone, but, at least, it is at the level I normally live with rather than ripping me into shreds. I am sure that it is just what you would call normal, but I worry that days like yesterday are a window into my future, I know that the doctors would give me stronger painkillers, but that somehow doesn’t make it seem any brighter, just knowing that my body would ever have to be producing that level of pain somehow doesn’t seem to lie easy on me. I know it’s pointless worrying, or even thinking about something that I won’t be aware of, but it’s my body and me that will be living in the knowledge of reality. It is so often the fear of the future that gets to you, even when you know that there will be ways round thing, ways of making life bearable…..





A path to happiness

No one wants to be housebound, but it is a place that anyone can find themselves at any time. You don’t have to be chronically ill, to face a future of your world being restricted in this manner, all it might take is an accident, or a stroke, or simply old age, for you too to be here. Yet it is the last thing that any of us really takes as a serious possibility. Even I didn’t really see it as something that could seriously happen to me. Yes, I knew that there was a possibility, but if I had taken that chance seriously, we would have moved home as soon as we could once I had my diagnosis.

Like many couples once we were married, well buying a home rather than renting made sense, and like most couples, we bought what we thought was our starter home. Money was tight and basic was a luxurious description of what our home looked like. With a lot of hard work, and living on a tight budget, we transformed it as fast of we could. We had just had the kitchen fitted and were still decorating it when the news arrived, I had Fibromyalgia. Six months later, a second slap around the face, brought my PRMS. We couldn’t afford to move and with the fear of having to give up work, well we made the only choice possible, make this the best home we could. At that point, we still had the hope of moving in time, but within a year, that hope was destroyed by the recession and negative equity bit. That is how quickly and simply you become stuck with a house, millions out there just like us, were caught in the same position, unlike them, I became housebound overnight by a flare. At the time, I couldn’t use my wheelchair and I couldn’t walk more than 15 feet. I was stuck inside what was now our much loved second floor home, with four steep flights of sandstone stairs descended between me and the outside world.

I managed to hold on to my job for three years, but then, well then I was made redundant. In a way, it was a blessing as I managed to pay off a chunk of our mortgage,  which reduced our monthly payment to a level we could cover without my wage. Money wasn’t going to make the slightest difference by then, even a ground floor home wouldn’t give me freedom as fatigue had reduced my activity to almost nothing. Where ever I was, I was still going to be housebound. I am telling you all this, because if it could happen to me, it could happen to you. No matter how well you plan, how well you are at this moment, your whole life can be flipped without any action from you in any way.

This is my 9th year of being housebound, my 9th year of not seeing the world in the way you and your friends and families do. Where I am, is to a great extent is a place where time no longer exists. Nothing, other than the electrical goods that have reached their preprogrammed obsolescence date, has changed within these walls in any significant way, as I was the DIY’er and the instigator of change, not even the walls have been painted. Every day I have woken in the last 9 years, my world has been identical. The one action that we took that I am so glad that we did, was when we decided to make our home the best that we could. I may have seen the same walls every day for 9 years, but I made sure that they are walls that I love.

I can’t work out if it is me, or some odd thing that goes along with my health, but I am the total opposite of my home, as a person I have totally changed. If you had asked me 15 years ago, when I was diagnosed, if I could survive being housebound, I would have given an emphatic no. I was like anyone else, I enjoyed going out, loved walking so much so, that I’d never even wanted a car, or learned to drive one. I enjoyed socialising, but I admit that I had recently matured past the party animal mode, married life was too good. More than a weekend without leaving our home wasn’t something I would have even considered. Housebound would have sounded like hell, yet here I am happy. My life now, compared to my life then, is like chalk and cheese, but inside, I don’t feel as though I have changed, even though to survive I must have.

All you have to do is read back through my four years of writing, and you will see that I have tried many time to work out, how this all works. Not once have I been happy with my answers to all the questions that still spin around in my head. I think part of the reason I have failed before, is I have only looked at it on two levels, me as a person and my health. Not once have I taken into account the outside factors, the everyday pressures of life that we all live with and the role that they played. Without a doubt, the stress of buying our home, which to me was something I had never done before, were huge. I was newly married, a new homeowner and newly diagnosed with two life-changing conditions, all in the space of two and half years. In the following six months, I was promoted at work, to a much more intense and responsible role, and we lost our fight with the insurance company over a policy that should have paid our mortgage because I had MS. Then came the recession, locking us into not being able to even move. It really isn’t any surprise that my health went into free fall when you take all that into account. Two years later, I was housebound.

I know without a doubt, that in the first two years of being housebound that my health improved dramatically. I learned to eat again, got rid of the gastric nasal tube and gained three very needed stone in weight. Life was getting better so I had no reason to believe I would be here forever. During that time, I learned to live day to day, to not look too far into the future and to be happy with life as it was, because I believed it to be temporary. I now believe that it was those first two years, played a huge role in my ability to be happy in a housebound world. If I had known it was forever, I doubt I would be as happy as I am today. Throughout that time, I believed that I was getting stronger and that I was working towards returning to normality. That mindset meant that I had a goal to work towards and all I had to do, was be content until that point. Somehow I knew the worst thing I could have done was to circle a date on the calendar as being my freedom date. I didn’t want to be like a kid counting down to Christmas, especially, as my Christmas might be canceled. My goal was to get fit, not a date. Life became one day at a time, never looking past tomorrow but always living for today. For my own sanity, my days had to hold a routine to them, a structure that kept me on track and always with the goals of, work for my brain, food for my strength and sleep for my energy.

When my health plummeted again, yes there was a danger all of that could have been undone, but I maintained all of it, I also adding in a process of trying to find the good in every day and enjoying it. Add this together with my post from a couple of weeks ago, “Breaking the Fear” and at last, I think I have made sense of it. Like so many things in life, it the perfect storm, all the element came together and here I am. When you live day to day, time oddly stops, something that has been probably helped by the fact my home hasn’t. If I didn’t have it written down, I wouldn’t believe for a second that it is now my 9th year. My concept of time, routine, daily normality have all been changed forever. From the minute I wake at 8:30, I am focused only on what I do online, that takes me through to 6pm, then to those three hours daily where Adam and I are together, followed by bedtime at 9pm. There is my life. It doesn’t sound like much, but to me, it is now everything. Despite once never believing that it was possible, I’m happy. If there is a secret to a happy housebound life, then oddly I think I can now bring it down to one word, simplicity.

The changes that hit our lives aren’t always in our control, but that doesn’t mean that we can’t adjust to them. It’s easy to say, why don’t you do this or do that, but the truth for most of us, we can’t do anything to change where we are. Yes, at one point, improved finance might have changed it all, but that time came and went, there’s no point looking back with what if’s, we all have to live for today, some of us more than others.


Please read my blog from 2 years ago today – 27/03/2014 – Spasms and more

I woke this morning at just before 5am, my legs were screaming at me in a way they haven’t done for a long time at night, in fact, I don’t think I have felt it like that since before I was prescribed morphine. It wasn’t just the spasms that were shouting for my attention but I also had pain coming from the work that the chiropodist did yesterday, both my big toes are red and angry where she clipped and scrapped away all the dead skin, with them so raw the pressure of the duvet was just too much for them. I sat up and reached straight away for my booster tablet and glass of coke, I knew that there was nothing I could do other than take the meds and try to massage them until they calmed. Breaking the spasm isn’t the end of pain, it continues to hurt for a considerable…..





Inspiration for me

I don’t know what got into me yesterday, but even after I finished my post, which usually clears my head, I found myself still feeling the same. Reading it back, was a huge mistake, I probably should have just left that for a few hours or so, but I didn’t. I found myself fighting tears, tears that had no reason or no result. I honestly felt so alone, it was painful. The stupidest thing about that is, I had Adam here. He is on a weeks holiday just now, so oddly, I haven’t been alone for days. Mind you, I guess that’s why that sort of alone hurts, I could have had a crowd around me, and I still would have felt the same. So I am happy to report, that today, that feeling isn’t gone, but it’s back in its place, part of me, but not all of me.

I am now on my third load of tablets, designed to help with the pains in my guts. The first two failed dramatically. The Mebeverine brought so many problems with it, that the fact that it did help in lessening the pain, didn’t matter. I was left with the worst heartburn I ever remember having. Getting someone who has no memory, to take a tablet twenty minutes before a meal, is now officially impossible. I either forgot to take it or my own speciality, I took it, then forgot to eat. That one produced the worst heartburn, but, even when I got it right, the side effect was still there. The night that it managed to scare me, was the one when I actually woke because I had a mouth full of sick. Not a little bile, but a mouth full of that day’s dinner. I’m just glad that I woke.

I am now on Alverine. This is just day three, and although it isn’t perfect, buy I feel so much better. There is still pain, but it is at the same level of pain as I get anywhere else in my body. In other words, it is at a manageable level. For the first time in about three or four months, I have just had two nights sleep without interruption. For a couple of years now, I have slept for 11 hours straight every night, then suddenly, I was awake every night in pain. I have become so used to it, that I had a set routine, I would go to the loo for a pee, head for the kitchen, have a cigarette and head back to bed. The problem with that was, that I never went back into a proper sleep. I would say it was a mixture of a dozing and moments of true sleep, which just isn’t good for me. If there is one thing that I need it is sleep. Right now, physically I feel better than I have in ages, which is probably why I felt as I did yesterday, it happened, because I could, I wasn’t tied up in nothing but extreme pain.

For two nights in a row, I have slept, nothing got in my way. Then this morning, I woke with the alarm, but at the same instant, I felt the pain in the left side of my back and the top of my legs. It is something that I get a lot, but it was just a bit of a bummer, to find that not all the pain was controlled quite as much as I thought it was. Right now, I’m still in that pain, lessened because I’m now upright, but I know the only thing that will clear it, is emptying my bowels, and that’s probably not going to happen for a couple of days. I know that I was probably just being over-hopeful, but if we don’t hope, what else can we do.

It was a long time ago now, that I made the decision that modern medicine was the thing, I was going to put my hope in. Having over the years, tried almost anything that I could get my hands on, that I could afford, I made my choice. For me, it was partly down to cost. Living in the UK, I have the benefit of free medical care. Living in Scotland, I also get all my medication for free too. Without a doubt, if I had to pay for everything, I probably wouldn’t be so quick to say, “This isn’t working please can we try something else.” I suspect, working or not, I would, at least, push on with what is partially working until, I had taken everything I had been prescribed, before switching. So I am in a luxury position compared to many, in reality, it’s the way it should be for us all.

I have to say the costs that others faced, wasn’t something that I even thought about until I joined social media. It was like crashing into a spike-filled brick wall. Suddenly I found myself talking to people who were having to choose between their medication and basic things we all need to just live. For me, that whole experience was extremely hard, I even went through a spell of feeling incredibly guilty. Here I am surrounded with medication for every aspect of my health, talking with people who didn’t even have access to anything beyond aspirin. I felt it so badly, that for about a year, I stopped talking to people on twitter at all, and closed down my Facebook account. Yes, I still tweeted, but I avoided actually responding and ran a mile from the chance of chatting. Almost daily, people tell me how inspiring I am and how much they admire me. Personally, I don’t get it, as to me, if there is anyone who our admiration should go to, it’s those who live our lives, without the care that we have. If for some mad reason all my medication was suddenly taken away from me, well, I don’t think I would be here very long.

Today, someone asked me how I managed to be so upbeat all the time. Well, now you know. It doesn’t matter how bad I might feel, how much pain I am in, I know that I am lucky. Yesterday was one of my blips, I wouldn’t be human if I didn’t have them. Yes, I was already a positive person, but the above is something that I never forget. I no longer feel guilty for the care that I get, but I do count myself as so privileged to live in a country that even cares at all.


Please read my blog from 2 years ago today – 19/03/2014 – A perfect life

Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.

It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week, I see him for less……





Somewhere inside

To an outsider, my life must look so dull. To me, no two days are ever the same. I never realised the depth and variation of sensations, that there are, that one human body could produce, nor the intensity of feelings or the emotional kaleidoscope, that could produce. I guess that we are all mistaken in making one assumption, we are all the same. It’s an assumption, that I made like most when I was still a child. I looked at the world and saw that we all have one head, two arms and two legs, therefore, we are all the same. I had that mistake reinforced when I was constantly told my doctors in my twenties, that there was nothing wrong with me. All the pain, the fatigue and everything else I felt, apparently, didn’t exist, or everyone out there was going through exactly the same, and I was just a wimp. I accepted the second, as fact. I was a wimp and I was just going to have to get on with it, as everyone else did. In some ways, I am now glad that I took that option, as it taught me how to live with what I now know is an amazingly difficult condition, to live with.

I can honestly say, that no two days are the same. Every hour of my life is different from the one before. If I were to look at it on the basic level, yes, I could just say that I am in pain and discomfort, but even that changes all the time. The combinations, the exact locations and how they feel never stands still. I might be motionless, but my body never is. I have tried so many times to explain what it is like, to live within my body, but it doesn’t matter which post you pick, which day, month or year, not once have I been totally happy with my description. I can’t write in the detail required, in a way that would compel anyone to continue to read. By the time, I had pieced together, a fair and detailed description of one part of me, it would have changed and my words would be wrong. I know, because I have tried and the result, is that I delete it and I try again. If I get close enough to being happy and I publish it, I know by the time it is read, all of it will be history. Capturing my life is like taking a still photo of a tornado, it tells you little other than that second in an ever changing process. That’s why I’m happy I learned to live within it, when it was still forming, and long before it became so destructive.

From time to time, someone starts to read who understands how my life is. They recognise some of my posts and connect to events and the feelings that they bring. Those moments of connection, of understanding, mean the world to me. I know and I have said it a million times, our conditions don’t matter, If we share symptoms, lifestyles and emotions, that is what matters, that is enough to say that we are one. But, there are times when I feel so totally alone, like I no longer have a head, two arms and two legs, because, I can’t find the connection of anyone who understands it all. The world out there hasn’t changed, the world out there still looks the same, so it has to be me, it has to be me as I don’t seem to fit any of the moulds any longer.

I have yet to find one other who has PRMS, who I have found that connection with. I have met I think maybe two or three on twitter, but they weren’t the type of people who wanted to share. That’s OK, we all have a choice as how we want to live and finding someone else as open as me, won’t be easy. I know PRMS is rare, but I never thought that it would be such a lonely world to live in. As I have just said, without a doubt, there are people out there who get it, so maybe, it’s just me. Just me, is lonely. Not lonely in a conventional way, it’s not about company it’s about total understanding, connecting, finding a mirror to look in and seeing a reflection I understand. When your body is in turmoil, when every second is different from the one before, well the odds of finding someone in total alinement, says it isn’t going to happen. Even if it were just a shadow world, I’d like to, at least, say hello, long enough to high five in recognition.

I know I’m not the wimp that I once thought I was, I’m a long way from that. I know that I am probably the luckiest person in the world, to have found someone who loves me, who supports me and cares for me. I know that I have a huge community out there of people who read my daily ramblings, who care enough to keep in touch and say hi, from time to time. Yet, as I said, sometimes, it just feels as though I’m alone, which is probably the craziest thing I have ever written, but right now when the pain has jumped off the scale several times as I have been writing this, when I feel as though I have an alien child inside me, ripping my insides apart and spasms flying up and down my legs. I feel alone. Maybe, we all feel like this. Maybe, I’m more average, more “normal” than I think. Maybe, it’s just one of those days.


Please read my blog from 2 years ago today – 18/03/2014 – One simple fact

I find myself in an unusual position today, my right thigh, yes I did say right, is in almost constant spasm right down the front of it. The pain isn’t any worse than I often have in my left leg, but just being on the wrong leg makes is 100 times worse for some reason. You wouldn’t believe just how something appearing where it shouldn’t be, can actually really make feel far worse than it should, maybe it will settle down as the day goes on, or maybe I will just start to accept it and get on with everything……

Safety first or last?

Someone seems to have stuck a stick of dynamite up my GP’s backside and blasted him into the 21st century. Last month, out of the blue, the receptionist told Adam, that they now have a website through which we can now order my prescriptions and book appointments, without having to phone. I checked it out with total excitement, yes, my world has become that limited, and when I read the leader page, my excitement grew. There was my dream, access to my personal files. It didn’t last long, as it turns out it is up to each GP individually to decide if they want to open our notes this way or not, mine has chosen the not. I had also hoped that I might be able to request a phone call, since clearly I don’t need appointments, but no luck there either. On the good side, we can at least put in the prescription requests.

Then yesterday morning, the phone rang, it was a call from my doctor, well not quite, it was from the surgery number. There was this woman who introduced herself as the practise pharmacist. I wasn’t even sure that the practise employed a cleaner, far less something as posh as a pharmacist, so I was somewhat shocked. No, I’m not implying the building is dirty, it’s just I wouldn’t have been surprised to discover the receptionists were also the cleaners. Anyway, the pharmacist was calling to check that I was taking the correct dose of one of my drugs. There was an error in the dosage on her screen which I had spotted on the pack when it arrived here. Because I knew what I should have been taking, I had ignored it, but she sounded as though she was more than a little concerned and told me that I must only ever take one puff twice a day, not the two on the label. It was clear from the quantities we had been ordering that that was in fact, what I was already doing. It set me thinking about who is supposed to check what, as accidents can undoubtedly happen, we are all human after all. This one, surprised me, though, as I have been on that inhaler now for well over two years, and it has been supplied by at least two different chemists. The original prescription had been requested by my consultant, my doctor then wrote it up, and it has been in the hands of several pharmacists, but suddenly, out of the blue, one stopped and checked it that bit more closely, what happened to all the others?

We automatically assume when a drug arrives in our hands, that we have the right drug, with the right dosage instruction written clearly on it. I have never once, looked further than that. I’ve never checked online to see what the recommended dosage is, or questioned anything about any drug when first prescribed. I suspect, the same can be said for all of us, we assume, we expect and we believe that it is always correct. I know that in the past on two separate occasions a chemist has refused to fill one of my prescriptions, without first talking to my doctor. On both occasions, it has been the same thing, the very high dosage of steroids that I at times need for flares. They both wanted to double check them, as the dosage is off the scale for most people. That, I believed until yesterday, was the safeguard, the pharmacist. This time, I was lucky, when I started taking it, I remembered what my consultant had said about it, and how to take it, so I knew. That was pure luck, as normally, I remember nothing and by now I could have been taking a double daily dose for nearly 2 years. It appears that all our medications safety relies on, is luck. Is that really a good thing to work with, just luck.

Lately, we are being repeatedly told that if you can’t get an appointment with you doctor, and your condition is minor, to consult your local pharmacists. The TV ads portray this well-educated person, just a step below our own GP’s, who’s knowledge is vast and that we can trust, trust to prescribe us the correct treatment for what ails us. Long long before those ads appeared, in fact, for a lot of my adult life, that is exactly what I have done, for anything not serious enough for a doctor’s attention. I’ve watched them filling prescriptions, two of them side by side, apparently checking all is correct. I have even seen some, flicking through drug manuals, I thought to check dosages or any detail, they were uncertain about. For 2 years, my prescription has been in the hands of what must be dozens of these professionals, yet only now, one spots the error? Why?

In this case, there was no danger, but it could have been a very different story. There are a million and one drugs out there that could have killed me long ago, some of which I am actually still on. It has made my realise that maybe, just maybe, that in the future it might just be worth checking ourselves, something that these days, it’s easy to do. At our fingertips, is the exact same information those well paid professional use daily. Putting in one more check as we start yet another new drug, might just save us problems in the future.


Please read my blog from 2 years ago today – 17/03/2014 – Still longing

I used to think that when I grew up I would know the answer to everything and that my life would flow smoothly as I would have nothing left to learn. It’s amazing just how wrong a child can be and how far from even scrapping the surface I am from actually knowing anything. All of us have a million questions daily, some small, some amazingly big, but in our minds at the second they appear they feel just the same. I never got the chance to do so many things in my life that I wanted to do, not because anything really stopped me but more because life just took over, time pasts and somehow those things just became unimportant. The places I wanted to go, the……