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…..





Multiply wrong

Sometimes, good ideas just appear when you least expect them. For me, one appeared yesterday afternoon while answering some of the comments left on yesterday’s post. For a long time, my doctors have done little other than to throw more tablets at me and in around about way, tell me there is nothing more to do. The problem always seems to be that consultants don’t have the time to be able to understand our circumstances, outside our basic condition they specialise in. Our GP’s don’t have the in-depth knowledge of the finer details of our conditions and if like me, you have more than one chronic condition and if one of those conditions happens to be rare, well you are almost on your own, with the issues that they combine together to produce. As long as whatever is bothering us at that moment, slots perfectly into their speciality, we’re fine, but when there is a cross-over or a joined up combined effort, they are lost. Yet, they insist on keeping us under their care until our bodies start to seriously shut down when they eventually hand us over to the palliative care team.

It may just be down to the care that I have had over the years, but it appears to me, that what we need is another set of doctors/nurses, who if you like, will simply be chronic illness specialist. A team who would step in, once the consultants have done all they can, and before true palliative care is required. It doesn’t take a genius to read blogs from people who have different chronic conditions to see that we frequently share the same problems. Nor that the more conditions you have, the more broken and confused our care becomes. This team would be there to coordinate between them all. They would be able to keep a closer eye on our overall health and how we are dealing with our treatments, medications and even our pain levels. All things that the care we have right now lacks. They too would be able to call in any further support required or refer us back to our consultants when they see the need.

Multimorbidity is a nasty sounding word, but once you have three or more chronic conditions, that is the name that then applies to you. We are a group of people who as they word says, are dying in multiple ways. Is it any surprise that we fall through the gaps constantly. Frequently we don’t get the care we need, often because we ourselves don’t know which condition is causing what. Many appear to feel lost, unsure of what is available and who to turn to when they do need help. Having a support team not linked to one condition could change our lives dramatically. I, for example, have a dedicated MS nurse, not that I have heard from her for years. She is connected directly to my Neurologist, and knows nothing and can’t help with anything outside issue caused by my PRMS. I also have an MS nurse through my GP, he is great with MS issues, but nothing else. Outside of my consultant, who are in fact, very good, I have no support nurse or team for my COPD at all. Those two conditions aggravate each other, but right now, I make the decision who to turn to for help, something I’m sure I get wrong frequently. I also have a list as long as my arm, of other conditions, the worst being Fibro, HMS and Vasovagal, all that I deal with totally alone other than my GP. Right now, though, my biggest issue is caused by my PRMS, but I am waiting to see the Gastro surgeons due to incredible pain in my stomach. Confused, well put yourself in my shoes.

I know, simply by talking to people online, that there is a huge number of us in just this position. When you are constantly fatigued, constantly in pain, generally confused by the whole system, caring for ourselves isn’t always that high on our list of priorities. When it feels as though the medical profession has given up on you, and won’t be interested again until we’re near the end, is it any surprise. Yes, I know that on the surface, that this type of team would cost the NHS more, I think in reality that it wouldn’t. I am sure that it would, in fact, free up consultants, other care teams and GP’s. It would also ensure that the correct care at home, the right equipment and aids were also being supplied. Once your health has deteriorated to the level that mine has, the idea that I had one person, who unlike my doctor can come to my home, see me, assess me and instigate the right course of action, sounds like heaven.

Multimorbidity isn’t just a nasty sounding word, it is also a nasty place to find yourself. In an ideal world, all the above would be dealt with, we wouldn’t be left on our own to deal with all of it. What I don’t understand is how there is this sudden point when someone, who knows who decides it’s time to bring in the palliative care team, when we have dealt with everything to that point on our own. To me, that is a somewhat warped way of looking at our lives, that somehow our deaths get the attention we have lacked and needed for years. Somewhere along the line, the whole system has become twisted and for some people, especially those who live by themselves, it has quite simply become cruel.


Please read my blog from 2 years ago today – 26/03/2014 – Rotting before my eyes

I’m waiting, something I don’t think I have had to do for a while, the chiropodist phoned to say she is coming to cut my toenails this morning, once every 4 months they appear, cut them and vanish for another 4 months. It isn’t a problem for me as I don’t ever have to put on shoes or try and walk any distance, but I can imagine that many would find 4 months just too long to live in comfort. She suggested that I file them every couple of days, something I just haven’t done, like so many other things……

Not yet

I never take more than four steps these days to get anywhere. Four steps, enough to transit from wheelchair to bed, to settee, even to the loo. Four steps, that I have noted bear no resemblance to the way I walked just six months ago, suddenly, I am a stooped bent-kneed, bent back and a lot like a little old woman, without the “old”, thanks. I don’t know when it happened, all I know is that it has and I don’t like it. I discovered this new problem, again thanks to the podiatrist. No, she didn’t point it out, in fact, I didn’t stand-up at all when she was here. What I did do, was to lift my leg out in front of me, and rest my foot on her knee so she could cut my nails. In under a minute, there was pain running up the back of my leg and it just kept growing. The second leg was almost identical, just a little slower, but neither leg liked it and both told me clearly that straight, wasn’t a desirable position any longer. I hadn’t actually put any thought into how I stood, until that moment my second leg started to hurt. Somewhere in the back of my head, I was slotting all the pieces together, my legs are never straight any longer. I never stand tall, the stance that I had put down to hesitance about making those steps safely, actually had far more to do with tendons and muscles now setting into a seated position.

I had always thought that those old people, that I had seen throughout my life, walking slightly stooped, legs bent and hips flexed, did so because of painful joints. I thought that pain and fear of taking a fall, was the total difference, between, those elderly people who were fit and fast and those who had turned into snails. My picture of their lives has been shattered. Some might be suffering, that I accept, but some, just spend their lives seated and their muscles and tendons have seized up, just as mine have. In a handful of months, I’ve gone from upright to stooped, at every joint. Even when I sleep, which I do on my back, my legs are still not straight. My feet lie on their sides and my knees are bent. At no point, anywhere in my day are my legs straight, now because of pain, not originally, simply because I had to stop walking and I now sit all the time. I have just found the best example I have ever had for the saying “Use it, or lose it!”. I’ve lost it.

I know that I have related this to “little old women” but to be fair, the majority are little old men. For some I know this is due to a lifetime of labour that has damaged their spine and their joints. On that theory, though, white collar workers should never stoop, but they do. When you think about it, the reasoning to that one is clear, just look at the historic work split between men and women. Retirement appears and men settle into their armchairs, the woman continues to work. Before anyone shouts at me, please note the word “historic”. Those who continue to work into their 70’s and 80’s, male or female, all seem to acquire this stance much later, and now I think I have a better understanding of why. Don’t let granny or grandpa or even yourself sit all the time, as you really will get frozen in that position.

So what am I going to do? That is my biggest question today, what am I going to do about it? The first thing that comes back to me, is what can I do about it? I don’t believe that there is nothing I can do, but what I can is highly limited, if it wasn’t, it wouldn’t have happened to me in the first place. This wasn’t a lifestyle choice, this was a life imposed style, with no choice anywhere in the process at all. I have been aware for a long time, long before I even started to think about putting my safety first and to get my chair our of the cupboard, my muscles in my legs were tightening. Permanent contracture of muscles is part of MS, what I did wrong, was I did nothing when I was first aware of it. I don’t believe and never have done, that just because it’s part of any condition, that it has to happen quickly or without control of any sort. Physiotherapists won’t touch me, they know just as I do, that if you try to fix something in me, another part goes wrong in response. I still don’t believe that I can do nothing about it.

Right now I am sat here typing and there is pain in the lower half of both my legs. The calfs are the worst, but there is also pain in my shins and feet, but I am sure that I could gently exercise them simply by pushing my feet up onto their balls and lowering back onto my heels and raising my toes again. It’s gentle, it stretches and compresses almost everything that hurts. My thighs, well that one is harder. There is no way that I can possibly manage something like squats, but that doesn’t mean that there is no way at all, or that I can’t find any way of stretching them. At the moment, the only way I can come up with is while lying in bed. Clearly I have the opportunity when lying down, to push my legs as straight as I can and to hold them there until the pain pushes back. It’s not much, but it’s better than nothing. The day that we start looking at our bodies as a foregone conclusion is the day that we have lost. Yes, there are things that we have to accept, and I have. I can’t change the problem I have with weight, or how much I have to sleep, but if I can change or improve something that is right now causing me pain, then I will at least try.

I know without a doubt that the day will come when I will just give in, but it’s not here yet and that tells me a lot. Despite everything, I still have a strong will to live and desire to live it as well as I can. Yet, I still know the day will come, when I will just give in because I’m human. There is a point when our health becomes too much, and I am aware, of it tapping on my shoulder. I’d be an idiot if I didn’t. Just as I have heard and still hear, all those voices, the chorus out there that keeps telling me to “slow down”, “stop being hard on yourself”, “take it easy”, “no one will think badly of you”. Well, they’re wrong, I, will think badly of me and as long as I feel that way, well I can push those muscles a little harder, for a little longer and remind them, that I may be ill, but I’m not quite “old” yet.


Please read my blog from 2 years ago today – 25/03/2014 – Working the pain away

I think I knew the second I woke today that it was going to be a day spent not achieving my daily plan at anything like a normal pace. I didn’t want to wake up or get out of bed, I just wanted to lie there cocooned by duvet and comfortable with my head cradled in my pillows, I wanted to lie there and drift. Drift, that was the warning, that was my first feeling of the day, I wanted to drift, I was confusing want with fact as drift is all I seem to have done well so far today. I haven’t the slightest ability to move beyond slow or very slow and my brain just doesn’t want to play either, just happy to float along minute to minute not pushing or spurring me on in any way. So here I am…..


A new path, a new train of thought

I found myself apologising to Adam once again for the fact my body does nothing other than fall apart. We have been married for nearly 17 years, when we married, I honestly didn’t foresee myself being in this condition for at least another 20 years, yet here I am constantly crumbling. Clearly, we had been discussing the visit from the podiatrist and the impact of what she told me, is going to be on both of us. That’s one of the constant problems of living with chronic poor health, it no longer just impacts on me, it impacts on us. Every small change, every new development influences both of our lives. Nothing, not even my feet, are just another part of my body any longer, they are another part that needs Adams attention. Yesterday wasn’t just a wake-up call to me, but also to him. It turns out, that both of us thought that my feet were looking better than they had in a long time. So to hear that it is in fact, the total opposite, has left us both at a loss and grateful that she is posting out a leaflet which will show us both, what to look out for. I don’t know if it has affected Adam in the same way as it has me, but I have found myself thinking about various part of me, and wondering, if I am also ignoring something else, that I shouldn’t be.

That feeling isn’t something new, it has just been given a new boost in its intensity. When you have an array of conditions, pains that appear and vanish as quickly, others that stay there nagging at you, well, you have to wonder just what is behind it. There was a time when I noted them all down and took them with me to each doctor appointment, now, well now, I mainly dismiss and ignore them. I can’t help though but wonder, if, I might just be ignoring something that I shouldn’t. Yes, our doctors are there to diagnose or put our minds at rest that there is nothing wrong, but if you were to run to him daily, he would soon stop doing both. So you start to ignore or you start diagnosing for yourself. It is amazing just how much you can put down to your main condition, I do it now, as, on the odd occasion that I have pursued it, that is exactly what the doctors have landed up doing. My course of action is just saving the NHS a fortune in tests and adding another fuzzy question mark to my collection of uncertainties. If the truth be told, I frequently still add one, even after the doctor has placed the blame at my PRMS’s feet.

So what do we do? If we run too often to our ever nodding doctors, they start to dismiss us, to see us as a constant annoyance. Their rules, say that they have to treat us, they can’t dismiss us or swat us like flys, but I have been faced all too often by those who I can see would just love to do exactly that. There are those who prefer to put our symptoms down to some kind of neurosis, or our misunderstanding of just what our conditions can do. No matter how strong other tell me that I am, I have never, found the strength to simply turn around and say, “I’m not going home again until I have an answer. I am in pain and that pain doesn’t go away. I need something done, something that is going to put an end to it. You’re the doctor, treat me!” I have lost count the number of times I have wished to say just that, but what do I do? I do what I believe far too many of us do, I nod in return and I leave with the exactly same problem as I arrived with, with nothing done to even help me in the slightly.

If Doctors can’t or won’t treat the things that are major to our lives, what chance do we have when our health turns silent and painless. Yes, we are now aware of what could happen to my feet, but I have been left wondering what happens when other sensation nerves die, when I can’t feel pain in other parts of me. On the surface, pain vanishing sounds like heaven, but, I now see that if any pain suddenly vanishes, the truth is, I probably have a much bigger new problem, than I did before. I can’t help but wonder, what my doctor would say if I were to phone him, worried about the fact, that some pain has vanished. I always knew that loss of sensation was part of my future, but for some reason, I never saw that as a problem. I never once thought that loss of sensation could be dangerous, well not beyond having no sensation in my hands, that one is obvious. But what happens if you can’t feel the fact you’re having an appendicitis or that you have kidney stones. Feet are simple, you or someone else can see your feet, but what happens when there is no pain in a place that can’t be seen?

I’m sorry if this seems like a somewhat odd post, but I have spent the last 24 hours, thinking about my future health in a somewhat odd way. Like everything else, all I can do is wait and see. That’s another problem that comes with chronic ill health, all we can ever do is wait. For every answer we think we have found, it always finds another question, another problem, one that we didn’t expect, one that wasn’t planned, to throw at us, and all we can do, is wait, for the impact to arrive.


Please read my blog from 2 years ago today – 24/03/2014 – Breaking the myth

“There is little or nothing that can be done”, that’s a phrase I have read over and over again in comments and posts almost daily since I started blogging and posting on Twitter, it’s also the identical phrase I have heard for much. much longer, from my own doctors. For all of us I am sure it isn’t just not what we don’t want to hear, but is also the one thing that we thought we wouldn’t hear ever again once we had that all so important diagnosis. So much so, that apart from getting us through the benefits system and an answer to all those who look at you as though you are a nutter and there isn’t anything wrong with you, a totally pointless effort in obtaining. I have written before…..