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…..

Time trip

Posted on June 29, 2016 by livinginalimitedword

Sorry for the missing post I promised, but I’m taking some much-needed rest, so today again, a little late due to internet issues, are two past posts for you to enjoy from 2 years ago today – 29/06/2014 – Relax or maybe not

They say you shouldn’t speak too soon, guess what? I did! I published my post yesterday and within an hour I was once more struggling to keep going, my arms and legs were once more tight throughout and feeling as they were going to explode, in fact, I was feeling as though I was going to explode. I pushed through until just after 2pm and went to bed as I couldn’t even manage to click on one…..

Or step back in time to 4 years ago – How are you?

It is going to be one of those days, I can see that already and it is only 10am. The District Nurse phoned to check I was OK and if I wanted her to come out and see me, I answered all her questions and said that I was fine, Sods Law they call it and I’m there again. I had been off the phone for maybe 15 mins and I started throwing up again, which was one of the reasons she called. The Doctor wasn’t happy about the fact I was sick on Saturday night and he didn’t think it was food poisoning and sent…..

I promise you, I will have a fresh post for you tomorrow xx

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……

In search of help

Posted on June 27, 2016 by livinginalimitedword

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……

So much good, from the bad

Posted on June 25, 2016 by livinginalimitedword

Yesterday should have been a really good day, as I got the long awaited letter from PIP. Yes, I know that the assessor told me that there shouldn’t be a problem, but you never really know. Well…….. OK, she was right. Not only have I been awarded what I had been on before, they have actually increased the amount by over £100 a month, much needed now that we have the bill for the carers to cover. Without a doubt, it was the high point of the day, one that didn’t actually start well at all. It happened again, a second night where I soaked the bed through, and just as the first time, I was totally unaware of it happening. I woke for no reason I could find, to discover what had happened, and the guilt started at that second and lasted the whole day. Adam has taken a few days off, with the idea of just relaxing and resting, instead, he spent it washing, tumble drying and shopping for incontinent towels as clearly the towels I had in the house for leakage, just weren’t up to it at all. I had hoped, they would see me through to our next shopping day, when I could discreetly purchase some pads that would supply more safety.

I know that Adam is from a different generation, he doesn’t bat an eyelid at going to the supermarket to buy such pads for me, but I come from a generation which meant asking him, was incredibly difficult. When you have been brought up in a world where women don’t have periods, nobody goes to the loo or passes wind in front of another and only babies need nappies, a lot of things don’t come easily. My embarrassment meter has been way of its highest scale now for several days, but it still didn’t make it any easier. He set out from here after I had shown him the most common brand online, so he could find them with ease, even he admitted it is an aisle that he really doesn’t hang around in. He totally surprised me by coming back with not just the two different sizes I asked him for, but even a totally different brand as well, so I could see which suited me best. He surprises me all the time with acts like that. He has told me so many times that he wants to do more, to be more involved in my care, so that my life can be made easier, and it has been me over and over that has blocked it. Not just for those reasons, but yesterday would have been impossible without him.

I had to phone the doctor again yesterday morning, as I had noticed over the last few days that my feet had been badly swollen, not just their normal puffy, but grossly deformed with fluid. It was so bad that they were actually painful and when I did the press test, the crater left in my upper foot by my knuckle, took ages to refill. They didn’t just not feel like my feet, but I was also for the first time quite sure, that the swelling went all the way up my legs. When I woke in the morning, they had only gone down a little, and my hands were now so swollen that my rings were cutting in. I take Furosemide already, 10ml dose twice a week and a 5ml dose in between. Normally that is enough, but it’s not touching this at all. He has increased my dose to 40ml for the next 5 days to see if that helps, plus he is sending the district nurse out to take some blood, just to rule out that anything else is happening. As soon as I spoke to him, Adam poured out the top-up amount as I had already taken some earlier.

No matter how much fluid I passed, my feet kept growing. When I switched off my PC at 6pm, they were killing me. The pain just kept increasing and I didn’t know how to sit any longer. It was Adams idea that we tried walking to see if I could break up the spasms that were appearing all over the place. We slowly walked back and forward the length of the living room. I held his hands tightly as he walked backward and I wobbled all over the place. It didn’t work, the spasms kept coming. Out of desperation, we decided to take my socks off. The ones I am supposed to wear as I am at risk of a deep vein thrombosis. It worked wonders, socks gone the pain subsided, as long as I didn’t try to stand. The skin on my feet was pulled so tight, that they felt as though they might split. My feet looked worse than the night before. This morning, the problem hasn’t changed the slightest, they are still swollen and already painful. Despite the Frusemide I haven’t really passed any urine at all this morning, I’m just hoping the nurses will be here today, so they can see what is going on and report back to my GP.

I really don’t know how I would have gotten through yesterday without Adam being here. It was one thing after another, including yet another argument with our internet provider. Emotionally, I would have been a crumpled mess, physically a total disaster and there was no way, I could have washed all the bedding yet again, I’m still recovering from the first time. The good news there, the bed and I were dry this morning. So much went wrong yesterday, that not even the good news from PIP really got greeted with the joy it should have been. You could look at yesterday as mainly bad, mainly filled with stress and overpowering emotions, not the good sort, but it wasn’t like that at all. Yesterday taught me much especially about Adam and his commitment to caring for me no matter what it entails. Yes, I know the words have been said again and again. Yes, he has shown it by taking on so much and already doing so much for me, but yesterday was different. Yesterday was a full on “me” day, from start to end, and not once did he pull away from, or seem begrudging about his involvement. He showed me nothing but caring and understanding throughout. We haven’t had to live through such an intense “me” day, to date, the worst have been bullet points in a week, those bullet points became hourly yesterday. There is a huge difference in someone saying, “Don’t worry, it doesn’t matter what happens, I here for you” and them actually having to live it. I never doubted him, not at all, but I somehow I didn’t expect the total grace that he handled it all with. There wasn’t a single sigh or face pulled, none of those things I am used to seeing and hearing when he’s asked to do something he rather not, right then, or sometimes ever, but still he goes ahead and does it. Yesterday was totally different, and in an odd way, I’m glad my life went mad and it all happened as it did because it has shown me just how committed he really is, when it comes to being my carer.

Please read my blog from 2 years ago today – Becoming desperate

Last night turned out to be the worst evening I have had for a while, I just didn’t know what to do with my body. I spent the entire evening trying to break the feeling in my muscles, they were tense all the time and no matter what I did, there was no relief at all. Trust me I really did try everything, I stretched them in directions I didn’t think possible to twist my arms into, I pushed again solid objects, I pulled…..