Turning the pressure down

Posted on May 12, 2016 by livinginalimitedword

This is the third day of Summer temperatures this year, and the third day of feeling sick and increasingly tired. Yesterday, I was on a high having received the long awaited news from Teressa, it carried me through until mid afternoon when I was hit like a brick by exhaustion. We were lucky last year here in Glasgow and didn’t really have a Summer at all. This, though, I know is too early to last but if it is a sign of what is to follow, I’m not looking forwards to the next few months. Even after 30 years of being ill with PRMS, I have never understood why the summer heat should knock me for six, in the winter, I can produce the same temperature artificially and feel fine. Living in Scotland means we don’t really ever suffer from humidity so that one is ruled out. It’s another one of those mysteries of my life I guess. When I think about it, being slapped flat by the summer heat was one of the first symptoms I really remember. I can remember when we lived in Plymouth, I spent almost every summer sat on the floor in the kitchen. It was an old fashioned house and had thick quarry tiles on the floor, no matter what the outside temperature, they were always cold. I was heavily pregnant when we moved there in July, one of the hottest months I ever remember. I blamed my pregnancy that year, but the same thing happened every summer. I spent it sat on the kitchen floor, sometimes lying on it.

I don’t think there is a single person alive, who has MS, who doesn’t face the same problem every year. I have always been lucky, somehow, the people who I have spent my life with, have all, like me, not really been interested in going abroad on holidays and so on. I have to admit that I feel truly sorry for those who do have partners who insist on heading off somewhere hot every year. The conflict that it must cause is phenomenal, especially if they have children. I can imagine the mental trauma of not wanting to be a killjoy, but knowing that you will be really ill if you do go with them. It’s rare that I feel lucky, but that situation is one that makes me honestly feel that way. I know that my health has without a doubt, got in the way of many things that Adam would have loved to do, but couldn’t and wouldn’t, because of me but at least that isn’t one of them.

We actually last night talked very briefly about my feeling that he is being put under unnecessary pressure by all of it. I’m not too sure what even started it, he might have read my post, but it didn’t have that feeling of being in response to anything like that. I remember him saying that other people had often asked him how he manages to cope with such a stressful lifestyle. His response to them apparently was to say that he doesn’t see his life as stressful, it’s just his life. When I thought about it, that did make a lot of sense. I know when I am asked as to how I deal with being housebound, my answer is very much the same. The longer you live in any fashion, you become used to it, it is just the way it is, but that still doesn’t make it right, if there is an alternative. I can’t change being housebound, but I did do some searching online yesterday, about how I might be able to help remove some of that perceived stress of Adam’s shoulders. It appears that if I call the social services in to carry out an assessment of my needs, which is made up of a mix of medical and personal care, they will actually pay for the care required. So I could actually have someone come in to help me shower, dry and apply the creams I need, then dress me, all for free. I could even have someone here daily to cook me lunch, as I’m not really safe with cookers. They will either supply that care, or give us the cash, so we can choose the people we want,

On the surface, that all sounds great, but there is one huge problem that I really haven’t given enough thought too. Strangers unsettle me in every way you can imagine. Having someone here with me daily to sort out my lunch, would I know put Adams mind at ease that I am really OK, and not just saying I am over the phone. The flip side is, just thinking about that idea, is stressing me. I don’t deal well with people I don’t know, hence, Adam has to be with me, when I leave the house to go to the hospital. He even has to come in the ambulance with me, as that freaks me as well. I guess that what we need to do, is to arrange for an assessment, then talk all these things through with the person who is here. I am sure, that I won’t be the first person that lives with that issue, but before I do anything, I need to talk to Adam first. I guess much of what I want to do now, is far more about making ourselves know to all the different agencies who can help, find out what they can offer and how of course, how the financial side work. Once all that is done, well when the time comes that choice doesn’t come into it, we know where to turn.

From what I have read so far, unfortunately, Social Services are our first port of call. I have two brushes with them in the past, firstly when I was in my teens and in so-called care, if dumping me at aged 15 in the YWCA equates to care. The second time was about two years before I left my first husband, she is now his wife. No, she had nothing to do with us splitting on my side, but their story of not having been together before I left, never rang true, to anyone, especially when he moved her into our home before, I had even left. My dislike of her, though, comes down to the way she treated my daughter, yet another great example of social workers care, so I don’t have a great love of them. Having to deal with any of them again, doesn’t exactly fill me with joy. I guess that there are a lot of hurdles for me to cross along the way.

Please read my blog from 2 years ago today – 12/05/2014 – Take a duvet day

Sometimes it is easy to just get on with things to start your day secure in your daily timeline, knowing that once you reach that point or the one after, that you will be rewarded with food or a sleep, then there are other days. Those days we all know, when doing what you should just doesn’t sound like fun of any sort, or days when all you want is to be alone and hide from the world, not out of fear, but more out of a need to be solitary, to look inwards instead of out. I never used to understand the concept of “duvet days”, why would anyone want to just lie in bed, when there was so much that needed doing, so many tasks not completed and so many joys……

On the move

Posted on March 20, 2016 by livinginalimitedword

I found myself sitting on the toilet, watching my left hand intently. I have had odd spells of tremors for years now, but this, this was somehow different. It wasn’t my entire hand that was moving, it was just my fingers, almost as though they were playing an invisible piano, apart from my middle finger, it alone was moving side to side frantically searching. My tremors have returned, visible to the world, not hidden and slight, but in a fashion where the slightest glance can see. My hand was the last part of me to think that it was funny. For the past week, my spine and legs have been dancing around like a stringed puppet in the hands of a child. I was sat there, staring at the last thing that I believed that I still had total control over, proving once again that I was wrong.

When my health took its major dip, the one that led to my being give chemo, to kill off my immune system, in the hope that when it kicked back in, it might not be quite so aggressive towards my body, tremors were the most visible symptom I had. I shook like a jelly on a plate. Like now, and as it has been for 13 years, I have little control over my core. Somewhere in my spine, around about my waistline, there is a nerve that enjoys jumping. The result is that I sort of shudder and quiver. Back then it was constant and there was nothing I could do about it. Now, well, it comes and goes, right now, clearly it’s here. I have learnt tricks, like sitting in the corner of the settee, with my back pushed back into the cushions, so that the tremor is limited. If it is my hands that I want still, well I can either, which looks kind of silly, spread them tightly into a star, or, turn all my fingers in, so that my nails rest on my thumbs, somewhat like a lose clench. Of course, the one place where I can stop nearly all of them is lying flat on my back in bed. It’s easy then to pin everything in a way that makes any movement both difficult, and unlikely. To date, the one thing I can’t hide is when my legs start to jump. Even in bed, that one is visible and according to Adam, keeps him awake. Tremors may not hurt, but when your body is in constant motion, and you’re a poor traveller like me, the side-effect of seasickness is always around.

Why I am suddenly in constant motion, I have no idea. Stupidly yesterday even Adam asked, “Do you know what triggered it?” If I did, don’t you think that I would avoid it? What I do like, is when it is at its most violent, Adam has decided that it is up to him, to provide stability. I like it, because, he wraps his arms around me and doesn’t let go. He is clearly scared that I am going to fall, or that I will career into things. At times, he offers to hold me, even when I am sat down. From the look on his face, I can tell that it appears as though I am in pain from it, but I’m not. The closest to pain that my tremors cause really doesn’t come from them, but from my stomach or a spasm somewhere, combined with badly placed tremors, well, comfort is far away. It goes without saying, that I drop more things, send more cigarettes flying through the air, and gather bruises, as my limbs slam into furniture that of course, I know is there, but they have clearly forgotten.

Although I have seen tremors listed as a symptom of PRMS, in fact, all forms of MS, I haven’t really seen that many people writing about them, actually, I haven’t seen any. To the outside world, those who know little about us, it is a symptom more often associated with Parkinsons, what many don’t realise, is the two conditions hold a lot of similarities. On days like today, even I wonder, but as I already know the truth, I just quietly shake and wait in hope that tomorrow it will be gone. I remember years ago, when I was still actually taking the bus to work, so that says it has to be about 14 years ago now, that having a tremor was useful. I had grown used to the fact that my condition was invisible, suddenly people could see there was something wrong. I didn’t care what condition they thought I had, as long as someone was kind enough to offer me a seat. Back then they tried sending me to physio, in the belief that if I could strengthen my core muscles, then I would stop dancing around. Like almost everything I tried, it didn’t work. It did help to improve my stomachs flatness, but they weren’t actually too bad before they started. What I would give for a flat stomach these days, well, I’d give almost anything, but I bet, I’d still be trembling.

One of the side effects of tremors, like this, is the energy that they use. I am always more tired, which isn’t really surprising, as I am never still. What I’m not so sure about, is why my speech always seems to dip with it as well? I know that could have something to do with the fatigue, but even early in the day, I seem to stutter more and be less able in my conversation. I would almost say, that I develop a tremor in my brain and in my vocal cords, as mad as that might sound. Whatever is behind it, the result is a stuttering, jumping, quivering mess, otherwise know as my life.

Please read my blog from 2 years ago today – 20/03/2014 – What is that?

I headed for bed last night not even sure if I was going to make the short journey from kitchen to bedroom. Adam was making himself something to eat and I made a point of covering up the pain I was in as I knew he would just head off into a panic, the pain was in the back of my right lung and it was agony. Over the hour before I went to bed I had as always just been watching TV sat on the settee, the pain started just as a dull ache but I built and built, by the time I went to say good night to Adam, every step I was taking caused the pain to peak from the shock-wave of my foot just hitting the floor. I knew that I had my stash of tablet on the chest of draws by my bed and that was the only thought that kept me going as I tried to take off my dressing gown and hang……

Inspiration for me

Posted on March 19, 2016 by livinginalimitedword

I don’t know what got into me yesterday, but even after I finished my post, which usually clears my head, I found myself still feeling the same. Reading it back, was a huge mistake, I probably should have just left that for a few hours or so, but I didn’t. I found myself fighting tears, tears that had no reason or no result. I honestly felt so alone, it was painful. The stupidest thing about that is, I had Adam here. He is on a weeks holiday just now, so oddly, I haven’t been alone for days. Mind you, I guess that’s why that sort of alone hurts, I could have had a crowd around me, and I still would have felt the same. So I am happy to report, that today, that feeling isn’t gone, but it’s back in its place, part of me, but not all of me.

I am now on my third load of tablets, designed to help with the pains in my guts. The first two failed dramatically. The Mebeverine brought so many problems with it, that the fact that it did help in lessening the pain, didn’t matter. I was left with the worst heartburn I ever remember having. Getting someone who has no memory, to take a tablet twenty minutes before a meal, is now officially impossible. I either forgot to take it or my own speciality, I took it, then forgot to eat. That one produced the worst heartburn, but, even when I got it right, the side effect was still there. The night that it managed to scare me, was the one when I actually woke because I had a mouth full of sick. Not a little bile, but a mouth full of that day’s dinner. I’m just glad that I woke.

I am now on Alverine. This is just day three, and although it isn’t perfect, buy I feel so much better. There is still pain, but it is at the same level of pain as I get anywhere else in my body. In other words, it is at a manageable level. For the first time in about three or four months, I have just had two nights sleep without interruption. For a couple of years now, I have slept for 11 hours straight every night, then suddenly, I was awake every night in pain. I have become so used to it, that I had a set routine, I would go to the loo for a pee, head for the kitchen, have a cigarette and head back to bed. The problem with that was, that I never went back into a proper sleep. I would say it was a mixture of a dozing and moments of true sleep, which just isn’t good for me. If there is one thing that I need it is sleep. Right now, physically I feel better than I have in ages, which is probably why I felt as I did yesterday, it happened, because I could, I wasn’t tied up in nothing but extreme pain.

For two nights in a row, I have slept, nothing got in my way. Then this morning, I woke with the alarm, but at the same instant, I felt the pain in the left side of my back and the top of my legs. It is something that I get a lot, but it was just a bit of a bummer, to find that not all the pain was controlled quite as much as I thought it was. Right now, I’m still in that pain, lessened because I’m now upright, but I know the only thing that will clear it, is emptying my bowels, and that’s probably not going to happen for a couple of days. I know that I was probably just being over-hopeful, but if we don’t hope, what else can we do.

It was a long time ago now, that I made the decision that modern medicine was the thing, I was going to put my hope in. Having over the years, tried almost anything that I could get my hands on, that I could afford, I made my choice. For me, it was partly down to cost. Living in the UK, I have the benefit of free medical care. Living in Scotland, I also get all my medication for free too. Without a doubt, if I had to pay for everything, I probably wouldn’t be so quick to say, “This isn’t working please can we try something else.” I suspect, working or not, I would, at least, push on with what is partially working until, I had taken everything I had been prescribed, before switching. So I am in a luxury position compared to many, in reality, it’s the way it should be for us all.

I have to say the costs that others faced, wasn’t something that I even thought about until I joined social media. It was like crashing into a spike-filled brick wall. Suddenly I found myself talking to people who were having to choose between their medication and basic things we all need to just live. For me, that whole experience was extremely hard, I even went through a spell of feeling incredibly guilty. Here I am surrounded with medication for every aspect of my health, talking with people who didn’t even have access to anything beyond aspirin. I felt it so badly, that for about a year, I stopped talking to people on twitter at all, and closed down my Facebook account. Yes, I still tweeted, but I avoided actually responding and ran a mile from the chance of chatting. Almost daily, people tell me how inspiring I am and how much they admire me. Personally, I don’t get it, as to me, if there is anyone who our admiration should go to, it’s those who live our lives, without the care that we have. If for some mad reason all my medication was suddenly taken away from me, well, I don’t think I would be here very long.

Today, someone asked me how I managed to be so upbeat all the time. Well, now you know. It doesn’t matter how bad I might feel, how much pain I am in, I know that I am lucky. Yesterday was one of my blips, I wouldn’t be human if I didn’t have them. Yes, I was already a positive person, but the above is something that I never forget. I no longer feel guilty for the care that I get, but I do count myself as so privileged to live in a country that even cares at all.

Please read my blog from 2 years ago today – 19/03/2014 – A perfect life

Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.

It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week, I see him for less……

Somewhere inside

Posted on March 18, 2016 by livinginalimitedword

To an outsider, my life must look so dull. To me, no two days are ever the same. I never realised the depth and variation of sensations, that there are, that one human body could produce, nor the intensity of feelings or the emotional kaleidoscope, that could produce. I guess that we are all mistaken in making one assumption, we are all the same. It’s an assumption, that I made like most when I was still a child. I looked at the world and saw that we all have one head, two arms and two legs, therefore, we are all the same. I had that mistake reinforced when I was constantly told my doctors in my twenties, that there was nothing wrong with me. All the pain, the fatigue and everything else I felt, apparently, didn’t exist, or everyone out there was going through exactly the same, and I was just a wimp. I accepted the second, as fact. I was a wimp and I was just going to have to get on with it, as everyone else did. In some ways, I am now glad that I took that option, as it taught me how to live with what I now know is an amazingly difficult condition, to live with.

I can honestly say, that no two days are the same. Every hour of my life is different from the one before. If I were to look at it on the basic level, yes, I could just say that I am in pain and discomfort, but even that changes all the time. The combinations, the exact locations and how they feel never stands still. I might be motionless, but my body never is. I have tried so many times to explain what it is like, to live within my body, but it doesn’t matter which post you pick, which day, month or year, not once have I been totally happy with my description. I can’t write in the detail required, in a way that would compel anyone to continue to read. By the time, I had pieced together, a fair and detailed description of one part of me, it would have changed and my words would be wrong. I know, because I have tried and the result, is that I delete it and I try again. If I get close enough to being happy and I publish it, I know by the time it is read, all of it will be history. Capturing my life is like taking a still photo of a tornado, it tells you little other than that second in an ever changing process. That’s why I’m happy I learned to live within it, when it was still forming, and long before it became so destructive.

From time to time, someone starts to read who understands how my life is. They recognise some of my posts and connect to events and the feelings that they bring. Those moments of connection, of understanding, mean the world to me. I know and I have said it a million times, our conditions don’t matter, If we share symptoms, lifestyles and emotions, that is what matters, that is enough to say that we are one. But, there are times when I feel so totally alone, like I no longer have a head, two arms and two legs, because, I can’t find the connection of anyone who understands it all. The world out there hasn’t changed, the world out there still looks the same, so it has to be me, it has to be me as I don’t seem to fit any of the moulds any longer.

I have yet to find one other who has PRMS, who I have found that connection with. I have met I think maybe two or three on twitter, but they weren’t the type of people who wanted to share. That’s OK, we all have a choice as how we want to live and finding someone else as open as me, won’t be easy. I know PRMS is rare, but I never thought that it would be such a lonely world to live in. As I have just said, without a doubt, there are people out there who get it, so maybe, it’s just me. Just me, is lonely. Not lonely in a conventional way, it’s not about company it’s about total understanding, connecting, finding a mirror to look in and seeing a reflection I understand. When your body is in turmoil, when every second is different from the one before, well the odds of finding someone in total alinement, says it isn’t going to happen. Even if it were just a shadow world, I’d like to, at least, say hello, long enough to high five in recognition.

I know I’m not the wimp that I once thought I was, I’m a long way from that. I know that I am probably the luckiest person in the world, to have found someone who loves me, who supports me and cares for me. I know that I have a huge community out there of people who read my daily ramblings, who care enough to keep in touch and say hi, from time to time. Yet, as I said, sometimes, it just feels as though I’m alone, which is probably the craziest thing I have ever written, but right now when the pain has jumped off the scale several times as I have been writing this, when I feel as though I have an alien child inside me, ripping my insides apart and spasms flying up and down my legs. I feel alone. Maybe, we all feel like this. Maybe, I’m more average, more “normal” than I think. Maybe, it’s just one of those days.

Please read my blog from 2 years ago today – 18/03/2014 – One simple fact

I find myself in an unusual position today, my right thigh, yes I did say right, is in almost constant spasm right down the front of it. The pain isn’t any worse than I often have in my left leg, but just being on the wrong leg makes is 100 times worse for some reason. You wouldn’t believe just how something appearing where it shouldn’t be, can actually really make feel far worse than it should, maybe it will settle down as the day goes on, or maybe I will just start to accept it and get on with everything……

Safety first or last?

Posted on March 17, 2016 by livinginalimitedword

Someone seems to have stuck a stick of dynamite up my GP’s backside and blasted him into the 21st century. Last month, out of the blue, the receptionist told Adam, that they now have a website through which we can now order my prescriptions and book appointments, without having to phone. I checked it out with total excitement, yes, my world has become that limited, and when I read the leader page, my excitement grew. There was my dream, access to my personal files. It didn’t last long, as it turns out it is up to each GP individually to decide if they want to open our notes this way or not, mine has chosen the not. I had also hoped that I might be able to request a phone call, since clearly I don’t need appointments, but no luck there either. On the good side, we can at least put in the prescription requests.

Then yesterday morning, the phone rang, it was a call from my doctor, well not quite, it was from the surgery number. There was this woman who introduced herself as the practise pharmacist. I wasn’t even sure that the practise employed a cleaner, far less something as posh as a pharmacist, so I was somewhat shocked. No, I’m not implying the building is dirty, it’s just I wouldn’t have been surprised to discover the receptionists were also the cleaners. Anyway, the pharmacist was calling to check that I was taking the correct dose of one of my drugs. There was an error in the dosage on her screen which I had spotted on the pack when it arrived here. Because I knew what I should have been taking, I had ignored it, but she sounded as though she was more than a little concerned and told me that I must only ever take one puff twice a day, not the two on the label. It was clear from the quantities we had been ordering that that was in fact, what I was already doing. It set me thinking about who is supposed to check what, as accidents can undoubtedly happen, we are all human after all. This one, surprised me, though, as I have been on that inhaler now for well over two years, and it has been supplied by at least two different chemists. The original prescription had been requested by my consultant, my doctor then wrote it up, and it has been in the hands of several pharmacists, but suddenly, out of the blue, one stopped and checked it that bit more closely, what happened to all the others?

We automatically assume when a drug arrives in our hands, that we have the right drug, with the right dosage instruction written clearly on it. I have never once, looked further than that. I’ve never checked online to see what the recommended dosage is, or questioned anything about any drug when first prescribed. I suspect, the same can be said for all of us, we assume, we expect and we believe that it is always correct. I know that in the past on two separate occasions a chemist has refused to fill one of my prescriptions, without first talking to my doctor. On both occasions, it has been the same thing, the very high dosage of steroids that I at times need for flares. They both wanted to double check them, as the dosage is off the scale for most people. That, I believed until yesterday, was the safeguard, the pharmacist. This time, I was lucky, when I started taking it, I remembered what my consultant had said about it, and how to take it, so I knew. That was pure luck, as normally, I remember nothing and by now I could have been taking a double daily dose for nearly 2 years. It appears that all our medications safety relies on, is luck. Is that really a good thing to work with, just luck.

Lately, we are being repeatedly told that if you can’t get an appointment with you doctor, and your condition is minor, to consult your local pharmacists. The TV ads portray this well-educated person, just a step below our own GP’s, who’s knowledge is vast and that we can trust, trust to prescribe us the correct treatment for what ails us. Long long before those ads appeared, in fact, for a lot of my adult life, that is exactly what I have done, for anything not serious enough for a doctor’s attention. I’ve watched them filling prescriptions, two of them side by side, apparently checking all is correct. I have even seen some, flicking through drug manuals, I thought to check dosages or any detail, they were uncertain about. For 2 years, my prescription has been in the hands of what must be dozens of these professionals, yet only now, one spots the error? Why?

In this case, there was no danger, but it could have been a very different story. There are a million and one drugs out there that could have killed me long ago, some of which I am actually still on. It has made my realise that maybe, just maybe, that in the future it might just be worth checking ourselves, something that these days, it’s easy to do. At our fingertips, is the exact same information those well paid professional use daily. Putting in one more check as we start yet another new drug, might just save us problems in the future.

Please read my blog from 2 years ago today – 17/03/2014 – Still longing

I used to think that when I grew up I would know the answer to everything and that my life would flow smoothly as I would have nothing left to learn. It’s amazing just how wrong a child can be and how far from even scrapping the surface I am from actually knowing anything. All of us have a million questions daily, some small, some amazingly big, but in our minds at the second they appear they feel just the same. I never got the chance to do so many things in my life that I wanted to do, not because anything really stopped me but more because life just took over, time pasts and somehow those things just became unimportant. The places I wanted to go, the……