Dumbstruck

Posted on August 2, 2016 by livinginalimitedword

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

Posted on July 29, 2016 by livinginalimitedword

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……

Taking a time trip:

Posted on June 28, 2016 by livinginalimitedword

If you’re looking for a new post today, well I’m sorry there isn’t one, but if you missed yesterday’s, this link will take you there. Otherwise how about a time trip back to 2 years ago today – Changing the world

The start of another weekend and I don’t think I have managed yet to type one complete word without hitting at least one wrong key and having to correct it. The stupid thing is, I don’t actually feel that bad this morning, I am actually so far today the closest I have felt to being myself for a long time. I woke early again today, well when I say early I mean I woke at 6:30, the bathroom curtain…….

Or if that’s not far enough why not 4 years ago today – Minority to majority

For one just hour look at the world upside down, a strange request possibly, let me explain, just for today don’t just do things think about what you are doing. Take all the things you find simple throughout your day, those simple tasks like getting dressed making a cup of coffee, as you do each of these things try and do them with just one hand, or without bending a knee……

Mind the gaps

Posted on May 31, 2016 by livinginalimitedword

I seem to be spending so much of my time confused these days, lost as to what is happening and when. I knew, and I have even mentioned them several times, that I have both hospital appointments and on top of that someone from Social Services coming to see me, but as to when any of these things were, well, next week was all that was in my head. It appears next week is far sooner than I thought. When Adam phoned me at lunchtime yesterday, he told me that he had managed to change the appointment with Gastro to an earlier slot on the same day. I had been worrying that going there so late in the morning, would lead to another horror story. I was so pleased that that one was sorted out, as I was quite honestly stressing about it already, and it’s not until the 16th of June, then Adam said something that made the colour drain from my face.

This Wednesday morning I will be at the breast screening clinic. That particular appointment was originally supposed to have taken place back in January. Due to not even being able to book an ambulance for five different dates, it was finally shunted all the way to May. I don’t know why, but I didn’t think it was until next Monday, no, that wasn’t one of the possible dates, just one my brain managed to create all by itself, something it seems to be doing with ease recently. My confusion was all the greater as quite clearly, Monday would no longer be May, but my brain was quite happily just ignoring that fact.

Not surprisingly, the fact I had that one wrong, meant the visit from Social Services had also become muddled. When Adam told me the other day, clearly, I wasn’t really able at the time to take in all that he was saying. He asked me something about would the two being in the same week, be too much for me. What he didn’t realise was that I was confused, so when he asked, I thought they would be three days to recover between them, not just one, plus, I thought I had the whole of this week doing nothing, just relaxing as much as possible, so no problem. Now I am faced with a total nightmare. Today, the shopping arrives, Wednesday, out to the breast clinic, Thursday to rest and then the assessment on Friday. This is a hugely busy and stressful week for me and I wasn’t even aware of any of it.

Dates, times, and appointments, all things that seem to be becoming more and more muddled. It doesn’t matter how many times Adam tells me what is happening, or how many times I have written these things down, my brain is determined to make a total mess of them. It isn’t helped as Adam throws into the mix of chatter about other people, his family, what’s no TV and so on. What should be clear information, lands up in my mind as anything but. Then leave me alone with what he thinks is clear details, and slowly I turn it into anything but. We have come up with different ways of dealing with this in the past, but none of them work and none of them result in breaking my confusion. But that doesn’t mean that we have given up, I have come up with a new idea, one that is at least worth trying. Last night, I suggested to Adam, that every Sunday evening when we sit down together to watch TV, that the first thing we do, is to go over everything and anything that will be happening in the next 8 days. I want him to tell me about what he will be doing, if he has time off, or he’s doing something with his family. If we have hospital appointments or if anyone is going to be coming here. I am hoping that with it being clear defined information, that we discuss face to face, that I will be able to avoid the panic attacks, of being totally lost.

Unless you have lived with confusion, it is something that is difficult to explain. I used to be so good at dates and so on, I never in my life had the need of a calendar or even a diary. I remembered everything, birthdays, days out, you name it, I knew when it was due to happen, at home, outside of it or at work. Finding that you can’t do something as simple as remembering the date of a hospital appointment, is scary. It’s even scarier when you suddenly don’t even know how old you are and have to work it out from the year you were born. Yes, that has happened to me, and more than once. We don’t expect our minds to drop information that simple and that vital, so when you are searching wildly for the answers, the fear starts to grow and just makes it worse by the second. It feels as though someone has managed to get inside your head, and has plucked all that you need that second, out of its home and planted it somewhere else, it’s just you don’t where. You run from place to place, to place, getting more and more desperate by the second. Should it be a case of someone else, telling you, you have it wrong, the effect is even worse.

I had without any doubt in my mind, the next two weeks planned out, I knew where I was going to be, what I was going to be doing and I was safe. Suddenly, all that knowledge was ripped into tiny pieces and I was standing there desperately trying to catch each piece as it fluttered just out of reach. It was out of reach because I knew where it was meant to be, I had known for weeks, so how could this new information possibly fit into my life. Making it fit was like picking up a mallet and voluntarily hitting myself over the head with it and I had to do it, as I now trust Adams brain, far more than I do my own when it comes to this sort of information. Once you find your brain letting you down, even if it is within defined parameters, you start to mistrust it in others, but there is only so much double checking that you can do before you drive yourself insane.

Watching your brain fall apart isn’t that easy to live with. I tried for a long time to pretend it wasn’t happening, but it is, and I know I can’t pretend it’s not any longer. It’s a growing fact, and something I am becoming more and more aware of. Which in an odd way, I guess is good. If I wasn’t aware, well I would be in a far worse place than I am.

Please read my blog from 2 years ago today – 31/05/2014 – The small things in life

I don’t know who you are but good morning to the six people reading my blog at this very second, 10:49 am 31/05/14. I really love that little globe at the top of my blog page, it has this strange effect of changing my mood, just by looking at it. There are days like today when I pop in to pick up the details for the link at the bottom of each post, to the post from 2 years ago and I am greeted by flags around the world, flags belonging to people who are connected to me, right at that second. Just knowing……

Drop the game

Posted on April 27, 2016 by livinginalimitedword

I couldn’t believe how tired I found myself yesterday afternoon. I know I still have to wait for the letter to be sure, but I felt like I had had a weight lifted off me, but at the same time, someone had pulled the plug marked energy. I found myself sitting here in the late afternoon, staring at the computer screen and not understanding how I couldn’t solve a simple Sudoku, and I do mean simple. My brain was befuddled by everything that had happened that morning, but what was getting to me the most was the fact that the woman who was here in the morning, quite clearly didn’t agree with the system any more than we did. She told us that so many people find the whole system wrong, especially for the reason I did, the feeling that we have to prove we are ill, even when we’ve been diagnosed by our doctors. The most telling thing, though, was her words, the way she said things, hedged so that she didn’t say anything that might lose her, her job, but still saying clearly that she saw the way they had switched systems as unfair. She clearly had to tow the line, like many of us have had to do, because we need a job. I equally got the feeling from her, that just as I would have done in her position, she was still going to do her job to the full.

I was lucky, I only had one job where I landed up feeling that way, that I would rather be doing anything, but what I was, as morally, I couldn’t deal with it any longer. I was selling what was called below the line advertising. In simple terms, I sold advertising space in publications where part of the cost of the ad, was given to charity. I eventually worked out that the charity got less than 5%, and although they would have got nothing otherwise, I just couldn’t settle the dilemma in my mind. The problem is, we all have to live, we all have bills to pay and if we don’t work, what then. Not all of us have the luxury of doing a job that we love in every way, but regardless of that, many of us still manage to separate our emotions and remain professional. Humans are amazing, I can’t help but wonder what the world would be like, if, we all stopped acting, and I don’t just mean at work. I have admitted freely that I have, and still do, use bravado in huge amounts to get me through the tough points. The people we deal with daily are just the same, could you imagine what it would be like to walk into a large store, where everyone was totally honest about how they felt at that moment, and where expressing and talking that way freely. Instead, we all wonder around lying to each other, pretending that everything in life is perfect. Sorry, I know that’s a bit off the wall, but yesterday made me notice it so strongly. Here we were, a woman who clearly isn’t at peace with the job she does but is a professional, myself, with bravado flowing like water, but failing as I went into frequent stuttering messes, and Adam equally stressed, but desperately trying to make general chit chat to ease the process along. Although every word that was said, was honest and appropriate, not one of us was actually being ourselves.

Without a doubt, it is something that I have seen in bucket loads since my diagnosis. I doubt there is one of us who feels that some of our doctors aren’t giving us anything, other than a practised routine. One they have honed over the year, for when it comes to dealing with the bad news. If you like, their trained bedside manner but usually without the bed. After receiving little other than bad news, I would go as far as to say, that I know now before they say anything, just what is coming. You learn to read their body language, as it is far more reliable than their words often are. Without a doubt, they have to learn to, as if they allowed themselves to be emotional, they wouldn’t last a week, far less a whole career. Some take it too far, though, as I have met a few, who I can say are nothing other than cold fish. Their separation from their emotions is so severe, that they come across even in their body language, as not caring, just doing the job and nothing else. They just sit there speaking as though they are reading a telephone directory, not a human being talking to another human, telling them that they have yet another condition, that is going to make their life harder.

When I look back to the days when I was being misdiagnosed, I can remember clearly how it felt to be sat there, being told politely that I was either nuts or a liar. The human factor always seemed to be missing, the whole idea that I was actually a person who was ill, was treated abdominally. So OK, they couldn’t confirm what I was saying as a condition they understood, but being dismissed, being told to go away and stop being a pest, as that is how it felt, was almost as bad as dealing silently with my condition. Getting the balance between the reality of doing a job, and being a compassionate human, really shouldn’t be that hard. Just as they learn a bedside manner for giving what they believe is bad news, surely they should learn one, for giving what is going to be for the patient, anything but good news. Yes, they do know we are desperate for help, being told they can’t give it, is almost equally as bad, as being told they have at last found it.

Body language, bravado, being business-like, playing all the acting games we each do daily, is essential for society, otherwise, well none of us really want to see that truth, but just occasionally, wouldn’t it be nice to have a true human to human interaction that isn’t cluttered with all those lies.

Please read my blog from 2 years ago today – 27/04/2014 – I survived

It is strange to look back and remember those hope we all had when we first set out on life for ourselves without the financial support of our families and no one sitting waiting for us to come home at the end of the day. For me well I had a short taste of about 18 months of being thrown out there, rather than launched when I was just 15. No matter how hard I think about it, the one thing I never felt was fear, nor did I ever feel there was the slightest possibility that I might just not make it. It wasn’t just the bravado of a teenager, but not making it, not having a life I would look back on and pat myself on the back for surviving with a touch of personal style, just wasn’t….