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……

Which, what or way next

Posted on July 6, 2016 by livinginalimitedword

The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.

Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..

It shouldn’t be this hard

Posted on June 30, 2016 by livinginalimitedword

I feel so weak, I don’t have a clue why I should feel like this, but I do. In fact, I started feeling like this a couple of days ago, but it has only become worse, not better. Every time I try to stand, my limbs are weak and don’t want to hold me, or even push me into an erect position. At first, as I said the other day, I put it down to the tremors and twitches, but I have begun to wonder what is truly at fault, is it my PRMS, or is it something else.

I spoke to my Dr on Monday, he phoned to tell me that he has at last received the letter from the consultant I saw about two weeks ago. As I knew, he is starting me on a drug that will hopefully melt my gallstones, plus he is arranging for the district nurse to visit me every couple of days, to give me an enema. As it is clear that my bowels are no longer capable of clearing themselves, they hope that the enema will stimulate them to move. At the moment they are bulking up until there is nowhere else to go, which is decidedly uncomfortable, if not painful. I took the opportunity to talk to him about the fluid retention and how it is now clear that I have been swelling up for far longer than I thought. Over the days that I have been on the higher dose of Frusemide, my entire body shape has changed, so he suggested that I stay on the 40mls to stop it from returning. I forgot at the time that there is an issue with my being on such a dose as I have Vasovagal. When it was diagnosed with it, I was warned about taking Frusemide as it might aggravate it. For those who don’t know, Vasovagal can and has made me pass out with incredible ease. Which is exactly how I feel, as though I could do at any second. I can’t be sure, but I think that could also be aggravating the twitches and tremors. Adam and I talked about it last night and agreed that I shouldn’t take it today and see what happened. By mid-afternoon, nothing had changed, despite me drinking as much I possibly could, without throwing up, another sensation that is hanging around, but we will see.

I know all too well that I might just be grabbing at straws. We all do it when we feel out of control, whatever we can come up with, has to be a better answer than the one we don’t want to face, that this just might be what it is, a new way of living all over again. So I’m holding tightly to that straw, no matter how thin, as I don’t know how well I would cope with that dreaded reality.

I had realised a few weeks ago that I was putting on weight again. At the time I was totally lost as to why, as I haven’t changed my eating habits, and although my weight had gone up when I was first housebound, by a very annoying and unshiftable 3 stone, it had stayed constant since then. I avoided standing on the scales, but when I was at the hospital, they forced me onto them. I was horrified when they told me that I was just under 14 and a half stone. Another 17lbs, and every single one of them more unwelcome than the first. This morning, I fetched the scales from the cupboard and ventured to stand on them in the kitchen, 13st 4lbs. I’m still not happy about it, but at least the Frusemide has clearly removed the mythical weight as it was nothing other than water. Which leaves me in a total quandary, carry around unwanted fluid and possibly feel better, or be happier about my shape and weight, and feel like death warmed up. Why is it, that the longer we live with our pet illnesses, that the harder the options get and the more likely it is, whatever the result, we’re not going to like it?

Wednesday 29th

I had to stop writing yesterday, I was feeling terrible, so for the second day in a row, I retreated to my bed. By the evening, I was feeling a lot better, not perfect, and the twitches were still there, but smoother if twitches can be smooth. The difference from the day before was marked, Adam and I decided it was worth not taking the Frusemide this morning as well, just to see what happened. Well here we are, the next morning and I don’t feel like I want to pass out. I twitching like a mad twitchy thing, but I don’t want to pass out. I think we have the reason, all we have to do now, is find the balance, what dose will control the fluid without making me feel ill.

The district nurse has been and like some kind of mad whirlwind has taken over my life. Firstly, she took my blood, but then there were a million questions, and chat about every single part of my life. Of course, we started with my bowels and the type and frequency of enema that I will require. She isn’t happy with the type that has been prescribed, it is a Phosphate Enema which she feels it too violent in its actions and in her experience, the smaller more modern ones, are better, but we clearly have to try the prescribed version. I’m hopeful that it will be here by Friday, so she will do the first dose then. She asked if I was having problems with my bladder, so I let her know about the leakage I have during the day and my recent nighttime bed wetting. To my delight, she is the person he should have sent me to, not the hospital continence team. She can supply the towels and pads so we don’t have to keep buying them. She did say, though, that it might still be worthwhile seeing the hospital team as well, as they might be able to offer other options, especially as I can no longer manage to self-catheter.

With the toilet areas all covered, we headed onwards. Next came mobility and how I was managing my wheelchair. She totally agreed that I should have an electric chair and is going to get me referred back to Westmark, the department at the Southern General hospital, who are responsible for the final decision. Then came the fact that I haven’t seen my Neurologist for at least 7 years, if not more. She could see that I was very reluctant when we got onto that area. I went over the last time I was there, and what had been said by all the different departments who I saw back then. I explained how they had all told me the same thing, that there was nothing that they could do for me. She was clearly not happy about what she was hearing, and I knew from what she said that she knew as well as I did, that I had just slipped through the system. There should have been return visits, and something had quite simply gone wrong. She is going to take a look at my notes and see what happened back then and let me know when she is here on Friday.

The stress of her entire visit built and built, by the time she left, I was once again a jibbering, twitching wreck. I know that I react to strangers is my home badly, but this one really pushed me. I had a distinct feeling that she intendeds to sort out my life, and I’m not too sure that I want her to. Yes, there are elements that I need from her, but the actual organisation of it all, I really don’t feel I am up to it. There will be more hospital visits, more people to see and more things to do when all I want is peace and quiet.

Please read my blog from 2 years ago today – 30/06/2014 – The doctor lottery

I seem to be just jogging along the same path every day at the moment, inside all I want to do is sleep, but when I am lying down I find I can lie there without sleep appearing. Yesterday afternoon I lay in bed during the afternoon just aware of once again how dead my arms and legs where and how incredibly tired I felt. I would have sworn that I didn’t sleep at all, but the clock told a very different story, I had slept for well over…..

It’s still there

Posted on June 23, 2016 by livinginalimitedword

It seems that with every day that passes, things are changing in my life. It’s not just the physical changes, the things that are clear to anyone reading my blog, but it’s also the psychological and emotional effects of all that is happening. I am having to adjust at breakneck speed, as each thing that happens, just hasn’t allowed me to assess and work my way through it, before the next issue, screams it’s way into my life. It has got to the point where I don’t even feel that I am even reacting to anything for at least 24 hours. I appear to just accept on the surface but then, bang out of nowhere, the next day I crumple inside and truth of it hits me. If there wasn’t enough going on, I have invited another to join all the mess that is now me.

It struck me over the weekend, just how ridiculous this thing I have about Adam seeing me naked, really is. Yes, I can and have, given many reasons over the years I have been writing, but none of them make it right. From the fact that I can’t stand the sight of my own body, right through to the biggest fact, he hasn’t seen me naked for at least the past 12 years, possibly longer. Like many marriages faced with all the issues that conditions like MS causes, sex became something that simply stopped and has never started again. At the start, it was because of our joint fear of the pain that it caused and was compounded when my libido totally vanished. Naked wasn’t required, something that as my weight rose once I because housebound, I was grateful for. When it became clear that I wasn’t coping with things like having a shower, I chose to have a carer, rather than Adam seeing my decrepit body. After only three showers, the fact that I don’t have a problem being naked with a complete stranger, it started to wonder around in my head, just how wrong the whole situation was.

I have put myself through total hell recently about the whole thing and just when I was coming to terms with it, those tumbling thoughts, started to ask, “Then why not Adam?”. I was totally shocked the other evening when a similar collection of words, tumbled out of my mouth. I knew Adam had accepted the situation, but I also knew that it hurt him, and hurting him, isn’t something I like doing. I had started the conversation, and I also knew that I really meant what I said. I want to get past this, to be able to feel comfortable naked in front of him. There are so many reasons for wanting things to change, but what had brought it home to me, was the other night when I wet the bed. It had shown me that there are a lot of situations ahead of us, where I might be forced into that situation, and I honestly fear reacting badly, or not being able to cope with it. I don’t need anyone to tell me that it’s stupid, I fully understand that, but when it comes down to emotional reactions, you don’t need me to explain how unpredictable they are. Add in the damage that has been done to my brain already, and as time passes will be done again, well, we really have to somehow get past it now, while I can still be rational about it all.

How we go about it is the biggest question that neither of us fully answered. Adam suggested that I continue with things as is, but the next time that dye my hair, that then, he should wash the dye out for me in the shower. I dyed my hair last week, so we are looking at maybe 6 or 8 weeks time. I think his idea is that gives me time to think and time to get used to the idea. I agreed, but I fear that it is still a case of nothing to everything in one quick act, and it could make things even worse, and hurting Adam even more. I have so much running around in my head just now, and I just feel as though what I have done, is to give myself yet another one.

I spent the afternoon yesterday, sorting out some of it anyway. I have found with ease some pads for the bed, that apparently, will hold up to 3 liters of liquid without leakage, plus they are washable. So I have bought two to start with, I hope that I won’t need more than that, but they are on the way. I also bought some underpants or knickers depending on where you live. I haven’t worn any for most of my adult life and when I did, it was just a g-string. Until a few weeks ago, the leakage that I had, was very limited and of the nature of few drips, rather than enough to wet my clothes. I have been using pads whenever I have been going through bad phases of it, without proper knickers which yes, is possible but often uncomfortable. In the last two weeks, I haven’t been without them, but I couldn’t go on like this forever, so I decided it was time to join the rest of the world and wear them. It is all beginning to add up financially and all because I’m not well. I’m hopeful that what I have bought, will see me through until I see the continence team.

When I spoke to my doctor the other day, I discussed what had been said to me when I was at the hospital. He hasn’t received the letter as yet, but he put my Morphine slow release tablets up from 70mg to 90mg twice per day. I am only on my second day of them, but they are really making a difference, the discomfort that I have lived with for the past three years, has been reduced to a more background level, rather than driving me nuts continually. It has also reduced the pain levels throughout. The feared fog or grogginess just isn’t there. If anything, I would say that I am that bit brighter, which if you think about it, makes perfect sense. So at least today, I can end my post on a positive note, something I fear has been missing in the last couple of weeks, as I have often said, the good is there when you look for it.

Please read my blog from 2 years ago today – 23/06/2014 – Not an answer, but it helps

My body feels like a wound up spring that want to explode but can’t. It took me nearly 3 hours to sort out the overnight tweets, nothing odd there but I was finding it harder and harder as every minute passed to use three keys on my keyboard, Ctrl C to copy the name, Ctrl V to post them onto my spreadsheet. Each time I did it I felt as though all I wanted to do was scream loudly, not out…..