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Dumbstruck

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

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

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

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

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

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

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

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

Mentally unfair

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When you are by yourself, as I am, day in day out, it is incredibly easy to take things to heart. What I mean by that, is that when someone says something perfectly innocently, it is heard or read in a totally incorrect way. When you send as many tweets as I do, or write as much, it’s not really surprising that from time to time, I completely innocently upset someone. It is even more likely to happen when your main audience is those with chronic illness, including those isolated as I am, by being housebound. When you are feeling down, are in a lot of pain or feeling more alone than normal, well we all take things in ways we normally wouldn’t. It used to be something I did a lot until I started to realise that I was just being precious. Then there are the times when I have suddenly found myself face to face with those I have upset, well, as face to face as the internet allows, and trying my best to sort the whole terrible mess out and often making it worse. The result is that now you wouldn’t believe the care that I try to take when I write anything, beyond a, “thank you” or a “(((hug)))”.

It is amazing just how much our moods are affected by what is happening to us at that second. As I said, I have frequently thought that someone was being either really nasty or far too personal for comfort. If you are like me, someone who has only come to social media since I became unable to work, understanding just how 140 characters, (as on my pet favourite Twitter only allows) can skew the real meaning with ease, takes time. Reading what isn’t there, is beyond easy. In the first year, I lost count of the times I found myself sitting here feeling wounded, but for some reason, I’m not the sort of person who makes a fuss about it. I just sit here quietly hurting, and actually making myself feel far worse than I did before I read it. It is easy to say, just take it with a pinch of salt, but when your body is racked with pain and you’re looking for an escape, not persecution, it’s sometimes hard.

Our bodies have so much to answer for, being in chronic pain is something that you get used to, but when you’re having a bad day, it’s affects us in ways we don’t expect. Without a doubt, I know that I, and probably others, wouldn’t bat an eyelid at any of those silly things that turn into that straw that breaks us. I’m using social media as it’s an example, as it one that I know for sure, we have in common. It could just as easily have been something on TV, or that our partners have said, whatever it is, I’m sure you can all sight your own examples. It’s easy for us to understand what is happening when we look back, but others aren’t always that patient. Adam has told me that he has often dismissed all I was saying and how I was doing so, because, he knew that that day, I was in pain, although I was totally unaware of my error myself. Those online can’t see me, don’t know me, and some often don’t care. So like so many things in our lives, it is us who have to take the care, choose our words, and our subjects, with others foremost in our minds. Our lives are so complex and as much as we like being around people, they don’t half make our lives harder.

Chronic illness steals so much from us, and for some of us, our patience is just one of them. I have to admit that I have over the years went through spells of hiding. I know that sounds odd to some, but when you’re struggling and you know that you have recently upset a couple of people, even when for the life of you, you couldn’t see how, it just feels easier to avoid them all. If I have hidden away, I know for a fact, that that means there will be others out there who have done just the same. If blogging has taught me one thing, whatever we have done, someone else out there will have done it as well. The one thing none of us should be doing is hiding. People don’t understand what is going on in our heads. They see our illnesses as physical and never take into account that the mental impacts can be huge. Just because most of the time we handle things well, doesn’t mean that we don’t have our off days. Every spasm, every time that we find ourselves with our arms too tired to push that wheelchair another inch, our mental state changes. It affects what we say and how we say it, and because we are so tied up with ourselves, we don’t always notice it and we can’t tell you, we don’t mean it.

We are tested in ways that the able-bodied and healthy will never understand. What our bodies do to our brains, especially our emotions, is something I know I didn’t understand, until I found myself here. It is only those closest to us who see it, feel it and know how to handle it. Our lives are nothing like they once were and this is just yet another example of how screwed up it becomes. So if I do at any time accidently hurt you, I’m sorry, and if you do me, well, I promise to understand and just brush it away.

Please read my blog from 2 years ago today – 29/07/2014 – Unable to stop

I am in one of those “I just can’t be bothered moods”, not normal for me I must say. In fact, I don’t remember when I last had one, I just want to do nothing, not here online or anywhere else, I just want to curl up and disappear for the rest of the day and worse still, I don’t know why. I hate this, I know some……

In search of help

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I’m trying so hard to move forward, to accept what has been happening in the last couple of weeks, but I still feel overwhelmed by it all. Every time that I open my mouth and hear myself talk, I just want to cry or scream, depending on the moment. I quite honestly don’t think that I have said more than five or six words recently, without a stutter or forget what I’m saying. It feels like someone stole my brain, but I’m not even sure that I want it back, well, without it, I probably wouldn’t feel so bad about the rest of it. I always knew that the day would come when I would lose control of my life and my body, but I didn’t expect it to all happen in such a short period of time.

If wetting the bed, forgetting and sounding like a fool all the time wasn’t enough, I have developed so many twitches and tremors that not even lying down, brings me peace anymore. Until now, although I knew my legs could melt from under me, I now have the added joy that they simply give up and fold. Something has happened around the muscles in my leg joints, at times it feels as though they simply won’t lock, and instead, shudder and hesitate, unsure whether to hold me or collapse. Before I never really felt scared of standing up, I have everything arranged in the house so that even if they melted, I was safe. Now, bang and they’re gone. The worst of it, though, is my arms are doing the same, I can’t even trust them to catch me. It really feels like every muscle in my body is plotting against me, and there is no way of getting them back. If you thought that the UK was having political problems, it is nothing compared to the fight going on inside me.

For five days now, I have been drinking Furosemide in an attempt to get rid of the fluid that has been collecting throughout me. Five days on, well my hands are perfect, my legs not too bad, but my feet, well they are still swollen, not as bad as they were, but they still aren’t my feet. Standing, when I can, is still painful and please don’t touch the tops of either of them, as that’s real pain. The really good thing on the fluid side is, I’ve had three clear night of not wetting the bed, but I don’t want to say that too loudly. I never thought in my life that my first action on waking would be to slide my hand under my bum, to check the moisture level before I move, but that’s yet another addition to my life.

Normally, I am really good at getting my head around things, to find a way to making it all fit and slot as just another part of my life. Right now, there is so much and so many different bits and pieces that I don’t really know where to start and even where it will end. The sheer volume of change is totally defeating me. Don’t get me wrong, I’m not slipping into depression, it’s more that I’m slipping into an exhausted confusion. I just so wish that I could have a single day, or even half a day without something dramatic, exhausting or upsetting happening. I long to wake up in a dry bed, for the internet to work smoothly, without annoying phone calls, or no people ringing the intercom, who just want me to let them in, but it’s not for me. For my fingers to understand how to type, for the tremors not to take over and sheer rubbish coming out on the screen. I want to not feel sick, to actually want to eat the food I fetch, without discovering that I’m no longer hungry. If I am, I would just love to be able to eat it without my throat hitting spasm mode and making it all too difficult. All I want is for my day to start and end as days use to. Then, I might just have a chance to turn my mind to accepting any of what I need to work through. I don’t have the time to even think about it, far less work on accepting it all. Is normality, really such a huge thing to ask for?

When just over three weeks ago, I phoned the Doctor to say that I was in a flare, I thought a few steroids and life would settle back into life. I didn’t have the slightest idea then, just how wrong I was. I have never had a flare like this, as in the past, it has been one thing, a lost arm, not being able to breathe and talk, always isolated to a set or group of recognisable nerves. I didn’t even expect a flare could take over my entire body and screw it all up. I’m feel lost. All too often, I find myself just sitting here, trying to work out what next or even how I got here. I have no answers, no idea how to fix all of this, or if this is it for the rest of my life, nothing but new things going wrong, one after another. I have to get some kind of control, some sort of acceptance and understanding, but I don’t know where to start. If you have a clue, well let me know, as I’m totally lost as to what I do next.

 

Please read my blog from 2 years ago today – Seeing it clearly

I think I have broken through the worst of this phase of uncontrolled muscle tightening, I sat last night on the settee without constantly having to put my arms into stupid positions in a hope of stretching the muscle to the point they would give in. It was totally motionless, I still did it occasionally but that was the big thing it was occasional not constant. So far the morning hasn’t been too bad other……

A day to delete

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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…..

 

 

 

 

Brain power

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I got up yesterday morning to be more than a little confused by what was in the fridge. Right there beside the milk was a bottle of mouthwash. I know I do some rather stupid things at times, but somehow, I always hold a memory of it, once I’ve discovered it. Yet I was staring at the mouthwash and there was no memory, not even of one of having used mouthwash overnight, the only explanation, was Adam. It didn’t make any sense, but I decided to leave it just where it was until he woke up later. The temptation to wake him was huge, as I had this huge question, “Why? spinning around in my head. As luck would have it, by the time he actually woke, I had forgotten all about it. It took only minutes though for his head to appear around the door, looking at me quizzically and asking “Why is there mouthwash in the fridge?” We then spent the next half hour, throwing our defence into the ring and each other having our say about it. Then silence fell for about ten minutes before Adam said “Well logically, the most likely person to have put it there is me. After all, the seal on those bottles is really fiddly, and you’ed have never managed it. And the seal is off and in the bin, I’m sure you wouldn’t have managed it. but I still don’t remember doing it?” I tell this story for two reasons, firstly, the next time he accuses me of doing something stupid, I will hopefully remember this, and remind him of it. Secondly, to prove that it isn’t just those of us with brain damaging conditions, who put odd things in odd places.

My personal track record is actually quite spectacular, it’s just Adam rarely finds them first. When I do silly things like putting clean dishes into the dishwasher, or the dirty ones back in the cupboard, which are my favourites. With Adam being at work and my using a range of dishes he rarely even touches, well, of course, it’s going to be me who discovers my mistake. What I don’t understand is why the second that I see them, I actually do remember doing it. How can you do something like that and blindly go on as though nothing is wrong, yet remember every second of it? I have come to the conclusion that it has nothing to do with memory, but it has everything to do with not making connections at the moment I do these things. Somehow, my brain doesn’t pick up on the fact I am doing something illogical, so I continue and complete the action oblivious to the fact it’s wrong. Somewhere in my head, I have made the error in starting the action and it’s as though my brain doesn’t want to admit it’s got it wrong, so it tries to cover it up, by lying to me, by telling me “This is what you should be doing, don’t think any further.” Unlike what Adam did, as we are now both convinced that he fetched the bottle of mouthwash from the bathroom cupboard, opened it and put it in the fridge, all in his sleep, despite the fact, that he’s never sleepwalked in the past, that we are aware of. Our brains are capable of the most amazing things, is it really that surprising that they can play these sort of trick on us?

The damage that a condition like MS can do our brains is never ending. It appears, to be totally down to the luck of the draw, how severe that damage actually is. I never saw my initial MRI that was requested by the ear, nose and throat department. Despite all the test doctors had done on my over the years, not one ever did either a CAT scan or MRI. When I was diagnosed with Fibromyalgia, the doctor specifically said, that there was no point doing such tests, as there was nothing to point to anything more severe. She did, though, send me to ENT for them to work out what was wrong with my balance. The Doctor I saw there, quickly dismissed the idea that I had Meniere’s and he sent me for that fateful MRI. I remember him clearly saying to me when he had the results, that I had either had a phenomenal number of Stokes for someone my age, or, I had MS. Well, we know the correct answer, but I still wish I had asked to see it, and what my phenomenal number of lesions actually looked like. Whatever they look like, I am more than aware of what they are doing to me.

I have a report that was written by my Neurologist in 2006 which I requested with reference to my abilities when it came to working. In it, he refers to my neuropsychological reviews, which showed “that memory is now significantly impaired in relation to general intellect and there is also evidence of frontal dysfunction.” He added later “I can not comment on the quality of her work, but clearly given her cognitive problems, her work is likely to be slower than previously and it is likely that she is more prone to becoming frustrated.” Although this was written in 2006 he was referring to the last tests done in 2003. It goes without saying, that without a doubt if they were to perform those tests now, my situation, will have deteriorated. Progression is something I just have to live with, but I have to say, that it is also part of the reason that I no longer see my Neurologist, I was fed up of tests that kept saying things were worse and no one being able to change a single tiny part of it. My lesions are eating my brain and slowly eating me.

When your brain starts falling apart like this, well he’s right it is frustrating, in many ways, it puts me in line with many patients who have Alzheimer’s. Just like them, my brain is destroying my life. Even if I could get out of my flat, I wouldn’t be able to work, in 2006, they recommended that I reduced my hours to part-time, but I didn’t. I wish that it was as simple as doing a little sleepwalking, or even having done something wrong or stupid, and simply forgotten. Brains are funny things and none of us appreciate just what they do until they stop doing it.

 

Please read my blog from 2 years ago today – 22/03/2014 – It should be easy

There is one thing on my mind today and that is comfort, it doesn’t seem to exist and it is also one of the hardest things to not think about or block. We all know what is like to just not be able to find a comfortable position, to keep moving, changing angle and pressure points over and over again, but without the slightest change that lasts for more than a few seconds. Those evenings spent in the cinema trying to enjoy a film you have been waiting to see, but the comfort monster has you in its grip and as hard as you try to stay still, to not spoil the film for those around you, you can’t. You spend the whole film squirming around, moving back and forward and side to side, but nothing works, nowhere in that seat you have to sit on is there a single spot that just works for all of you. It is something so basic and so everyday that most of us don’t……