Monthly Archives: February 2014

Disruptive sensations

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My day is once more running behind but for once it isn’t my fault. I actually was up an hour early this morning as I woke unable to cough and really bad pain in my throat, sleep wasn’t going to be an option, so I just got up, with the thought that I would be able to rattle through everything and have an early sleep this afternoon. Adam has taken a long weekend so he is still asleep but is actually going out this afternoon to see his mother for a couple of hours in town, be he woke and we had a chat before I got started, but it has been stop-start since then. I seem to be rather bunged up with this bronchitis, but the pain I woke with has now almost gone, I guess I was breathing through my mouth all night, but I have been coughing all morning. Then Jake called, he was looking for one of his long chats about nothing, as he is the only person I speak to other than Adam, well I never like to put him off as it’s nice to hear another voice. I am now up to date with every place his work sent him last week and every sale that he made, not that I am overly interested in credit card sales, but as I said the other day, what is there to talk about when you do exactly the same thing day in day out. One of the good things about having Jake as a friend is we knew each other through the music business, so we shared a large number of acquaintances, some who he still sees occasionally. Just chatting about old times really helps to keep it alive, even if I can’t remember half the names he comes up with, I do remember the venues and many of the stories we share. We may just speak once a week and normally for about 20 minutes, but it is probably the reason that I still remember my life from moving to Glasgow so clearly, when my life before that grows mistier daily.

I was asked on twitter today how I deal with overactive nerve sensations, I gave my stoke answer to it, to talk to their doctor about taking Amitriptyline. I know that many people have problems with taking it but for me it has really be the best medication for nerve pain, it can also reduce some of the mad sensations, but it doesn’t stop them and I know nothing that does. On the surface when you say to someone that you have pins and needles, or numbness, well their reaction is often that of “So what?”, which has never really surprise me at all. Everyone on the planet has had both at some time and for most people they are short lived and annoying, nothing more than that. Imagine your entire leg alive with the nerve sparks of pins and needles, not for a few minutes, but hours or even days, annoying doesn’t cover it. Once a sensation like that has been triggered it can often just get worse and worse, even turning into pain as it intensifies, or suddenly dropping to a constant tingle, but whatever it does, you can’t ignore it. Sometimes just like pain, massaging or applying deep pressure can help to ease them, but more often or not it is a case of just waiting for it to go, believe me, you can get really wound up by something sounds that small.

I remember one silly spell when I had with pins and needles in my hands, they were very slow moving and I started to get the feeling that they were moving in a pattern. I started to track them by touching the next spot I thought would fire and most of the time I was right. It was a bit like playing an electronic version of Simon says, tapping out the pattern and predicting the next point, but my hand was the machine. The pattern was there but would occasionally shift and would loose it for a while, it was really odd being able to play with my MS, rather than cursing it.

Numbness is a very different story, it is actually scary for me as I have written many times about losing my left hand, the whole hand was dead and clearly an extreme version, but there is now permanent damage in both hands. Numbness puts you in danger as you don’t only not feel objects correctly, you also don’t feel heat either, so things like cooking become a danger zone. For many years before I even knew I had MS I used to joke that I had Teflon hands, as I seemed to be able to hold on to a hot object far longer than others could. The truth was I wasn’t feeling the heat as everyone else did and yes I also got a large number of burns without knowing it had happened until I saw the burned skin.

We have all at times been sitting or lying in a position that cuts the blood flow to one of our legs, resulting in the whole leg or part of it going numb for a short spell. So all of us know what it is like to put a dead foot on the floor without being able to feel it at all, walking feels impossible, as you can’t tell where your foot is, well again that happens in MS, but nothing to do with blood flow, just nerves. It can make you walk in a very peculiar way, if you have bare feet, well again you can easily cut your foot without even knowing it has happened, with the following danger of infection. Nerves can create all kinds of sensations, I have touched on a couple here and spoken about many in the past, there is nothing they can’t do if they want to and there is nothing you can really do about it, other than try to disrupt their messages by applying pressure, pinching or rubbing. For those who have so far not had to live with a nerves system that has a mind all of it’s own, please trust me it isn’t something you ever want to live with, their names may make them sound trivial, but that is the last thing they are. Living in a body that is never silent, always giving you false messages, constantly interrupting and disrupting your life, is a place none of us ever want to be.

There is no medication I know of, well none that have worked for me and there is no limit to what nerves can do, long before they get to the point of causing pain. Some people have found relief through alternative therapy, which is why I am about to say that all you can do is try anything suggested and see for yourself the results. All of our bodies are different and how they react, is just as different. There might be something out there that will bring some relief and if you are suffering badly just now, I really hope you find it soon.

 

Please read my blog from 2 years ago today – 28/02/12 – Optimist of Pessimist? 

I realised today while chatting with a friend that we all make assumptions when it comes to our own and others health. She knows that I have MS and had assumed that I have relapse remitting just as she does, I don’t I have relapse progressive, for those who don’t know there are several variations within the Multiple Sclerosis family. The most common is relapse remitting which kind of……

 

And from – 29/02/12 – A vanilla cure all

If there was a smell in this world that I would hate to never smell again, for me has to be Vanilla. Pure Vanilla, not mixed with magnolia or any of the other things that air fresheners insist on adding. Vanilla to me takes me back to being a small child and before anyone jumps in with a connection to ice cream, well you are wrong. My mother used to make what she called cornflour custard…..

hypochondria?

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This is day 3 so I can now say with confidence that I have a mild dose of Bronchitis, the important but odd word there is “mild”, I’ve never had a mild dose in my life. I can only guess that my meds for my COPD is holding it at a low level, so I am just going to wait and see what happens, not point screaming for antibiotics if it will heal itself. I was really surprised that I didn’t get it last year, with my economy drive with the heating, I was just waiting for it to happen, as I know that whenever I have had to live in a cold house, I have always had 2 or 3 bouts over the winter months. This is the first bout I have had since we moved out of first home together, it was rented, freezing cold, with windows that didn’t fit and no heating at all, apart from the living room fire. Other than that and the weird fact that only after we rented it did I discover that there wasn’t an oven, just a hob, it was lovely, we were actually really happy there and it was our first home, the place where we started our life together and got married from, so despite the unseal floor boards and odd things we kept finding in cupboards, we loved it. We lived there for just over a year and despite all the flaws of the flat we were so happy and so full of plans for the future, 16 years on and life has no resemblance to any of those dreams at all.

Our biggest dream was that buying our first home, the one we are still in, was just a stepping stone, we had this idea that we were going to buy a home in the middle of nowhere. We wanted a house where we couldn’t see our neighbours and our views would be either of the sea or mountains preferably both, at the time it seemed so possible, we both were working the property market was good and it felt like all we had to do was to improve this place, which we have, then sell up and move, doing it all over again, until we could afford what we wanted. Now, well it will never happen, but it doesn’t stop us dreaming. None of us can see the future but 15 years ago when we married, I really thought I could and I really believed in the words happy ever after. Don’t get me wrong, we are very happy, but it’s not the fairytale that I honestly believed it would be at the time. Everything about Adam and I were so different from any other relationship I had been in, and together I honestly believed that the world was our oyster and our future charmed, in comparison to my past, life was a pure joy. I guess I was hoping for too much, as my past wasn’t gone just quietly waiting to strike me down big style.

You would think that once you have that fought for diagnosis that you would then stop looking for things that are wrong with your body, but I have realised recently that that just isn’t true. When you have spent so many years being told there is nothing wrong with you, well you get into a habit, of searching and questioning every small thing that happens. I spent nearly 20 years making lists in my mind, checking every section of me and questioning things that were probably perfectly normal to everyone else in the world, not having anyone who believes that you are ill, actually does turn you into a hypochondriac. It is actually human nature to assume that if someone else can’t find it, then it has to be something really serious, something they have either never seen before or is so rare that they are just missing it. You start to grasp at straws, to read everything you can find that might be in any way similar to what you are going through and when you do go to the doctor with a diagnosis in your head, you don’t tell them, as then they too will think you are a hypochondriac, mind you most of them already do. You spend so many years tied up inside and unable to get anyone to believe, that even once you do know and someone does believe, well you actually can’t fully stop doing it.

There is a fine line between listening to your body to be sure you aren’t pushing yourself too hard, or doing anything that will make you worse for a few days, or listening to your body and deciding there is something seriously wrong, when there isn’t. It’s nearly 14 years since I was given my diagnosis, one so serious that you would think that I would just accept it and work with what is known, but I can’t stop just checking, picking on something I feel or a pain that is somewhere new and starting all over with ‘the what is that’, what could it be and eventually finding a name I can hang on it, with a large question mark attached. Last year I found my COPD and gallstones, so maybe it isn’t all bad, as at least we are all prepared for the future they bring, but I just can’t stop wondering about this and that, my mind is never totally a rest over any of it. In an odd way, the NHS has taught me how to be a hypochondriac, because it was the only place where I could and sometimes still can, make any logical sense, of what my body does to me. I expect I will be far from the only one who will totally understand how being chronically ill, somehow it keeps you looking for any other possible illness just waiting to be diagnosed and you just can’t stop looking as that is how you have spent your entire life. I don’t like the hypochondria, but it is the only one available, we didn’t and don’t make up the things we feel and find, I just think we are quicker and more tuned to noticing changes that other don’t and yes we self-diagnose but only because we have learned that doctors just don’t always listen and don’t know everything.

Please read my blog from 2 years ago today – 27/02/12 – Rehab 

I actually had a visitor today a real human being walked through my front door. She didn’t bring any gift, even though she is the first person to visit here in 2012, she brought 2 hours of questions and checks. I gave in trying and hoping that the increased pain levels I have had for the last few weeks would go away

(At this point I was calling my form of MS RPMS instead of PRMS this is simply as the doctor who gave me my diagnosis as “relapsing progressive”, instead of what I now know is the accepted version of “progressive relapsing” which I have used since I was corrected.)

Don’t talk to me

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I know this is going to sound contrived but it’s not, I still didn’t quite manage that one job I had lined up for yesterday, a shower. As all to often happens the day moved on and suddenly it was too late, too late because there wasn’t enough time left for my hair to dry before I once again had to put my head on it’s favourite pillow and sleep. It’s been a long time since I last used the hair-dryer for many reasons, but one of the biggest is that my hair is now waist length and over dyed so many times, that I fear that the dryer will be too harsh and more will just snap off. Having said that I now also have the most common problem that women who die their hair have, major grey roots spoiling my perfectly purple head. I have lost track of the number of days that one has been just not done for now, probably better to say weeks rather than days. My beauty queen days are long gone so it isn’t really a huge problem any longer, mind you I was 11 when I last put on a bikini and strutted around a swimming pool. Now that’s a memory that got me into all kinds of trouble, I still don’t get what all the fuss was about, I entered the competition and won. It was just one of those small competitions that almost every swimming pool where there were large numbers of holiday-makers held once a month, I entered just because I was there at the time. I was delighted, but my parents went through the roof, I thought they would proud of me, but I hadn’t asked for their permission and that meant I was in trouble with them. Although it was during the summer holidays, it also got me into trouble at school, my picture was in the local news aper and my headmistress saw it and demanded to see my parents when term began. Apparently my behaviour was unseemly for someone attending that school and yet another black mark appeared on my records. Oh, how the world has changed since the beginning of the 1970’s, I think these days most parents would tell the school that it had nothing to do with them, well, at least, I know I would have. So much trouble and all I got was a prize of £5 and a the worst black eye I have ever had, just hours after winning I feel in the adventure playground and bounced my face off a log, I guess everyone including fate thought I was in the wrong, but I bet I was the first just crowned beauty queen with a black eye.

It’s strange how memories like that will reappear without asking them too, all to often I like most people I suppose, remember mostly when things went wrong, or when I was in trouble of some sort or other. I often wonder if I was even not in trouble, or not doing something that if my parents had known about, I would have been in trouble for. I am sure that I was happy at some point as a child, but those memories seem to have been over powered by everything else. I have tried scanning through my life in Aberdeen but it is so sketchy now and feels so far away that it is almost as thought it was a life that belonged to someone else. Even my first marriage has become just the same, other than moments connected to my children, the rest well it’s also slowly been wiped from my memory, just moments that connect and a lot of blanks and flashes of pain. Until I hit my 30’s my memories are so hazy that I can’t always get to grips when it comes to order or place, I just know what happened as a fact, but without detail or event location and timing. Maybe it is the same for everyone, I don’t know as I can’t see into others minds, but it feel personal and feels often wrong.

I didn’t set out to write about any of this today, but those who have read for a while will know that my post often contains sections of ramblings through my past, it took me a long time to work our why but the answer was so simple when I found it, that it seemed stupid that I didn’t see it straight away. I live so much in the past, as well let’s be honest, not much really happens in my daily life now, I know that that is why I hate talking on the phone, conversation when you have nothing to talk about, is rather dull and one sided, all I can do is listen. I only really have three things I can talk about, what’s in the news, how my health is at that second and the past, mix it with stutters, brain freezes and my latest trick of saying words in the wrong order and conversation is a minefield for me. For months now I have had a list of questions for my brother, but he hasn’t answered either my email or my letter, I could pick up the phone, but what and how do I say anything he will understand. By the time I had dialled his number, I know that I would be in a spin and my ability to make myself clearly understood will have diminished, I will be a stuttering mess and probably will forget, even if I write them down in advance, all the things I want to know about my mother.

We all take communication as a simple everyday thing, something most of us never have to think about, or even know we are doing it. My mind can deal with ease when it comes to writing, I can go over it and over it checking not just that it makes sense but it really says what is in my mind, ask me to talk the connection splits. Somewhere between thought and voice, it all goes horribly wrong. Adam is used to it, even if it is all muddled he knows what I mean, but he has been listening to it slowly changing from strong confident and to the point, into long silences, words missing, stutters and twisted words. But for someone like my brother who hasn’t spoken to me for ages, will he understand, will he be able to take time and listen to all of it not just the words, I doubt it. He isn’t known for being a quite composed person, he has a temper, a brain injury from birth that has left him with no patience and little ability to empathise. Talking with him takes more patience a control on my side, that I know I can’t handle any longer. I now find anything that has to be done over the phone so difficult that I avoid it, I “don’t do”, conversation even face to face is hard unless the person knows me, but even then I hit walls that drain me of energy and leaves me just wanting to send them away, as I can’t manage any more. Talking is a really strenuous thing to do and guaranteed to end with me in silence, unable to fill it in any way at all.

Please read my blog from 2 years ago today – 26/02/12 – An MS balance? 

So let me think, not the lead to the most exciting blog you might think, well the only way to find out is to read on. I went on my memory trail earlier today, it’s something I do from time to time, it’s a great exercise for me and I expect for anyone else who has a slowly fading memory. I have a fear that the day…….

I just don’t do

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I really have to push myself today as I need a shower. I needed it yesterday as well but I just couldn’t find the strength inside me to get off my backside and sit in a small cubical. So OK it isn’t as simple as that, the big problem is the overall effort it takes and that horrid sensation of pin sharp water digging into my skull. Add in the muscles that get too tired to properly wash my hair, or worse still finding that once you have that much-needed conditioner in, I can’t manage to wash it out properly. Finding yourself soaking wet and exhausted is the biggest issue or all, the only option to get dry is to wrap a towel around myself, and wait. I stood up several times and headed to sort out my clothes but I couldn’t even find the strength to complete that first step, the chance of managing the rest was slim. Showers, unfortunately, aren’t like most other things, you can’t leave it half done and return to finish it later. Adam has offered over and over again to help me, even if not in the shower but with getting dried and dressed, but I want to do it myself until the day I can’t do any of it alone.

All my life been pigheaded, I don’t need anyone else to tell me that, but when you have been independent from an early age, the idea of someone else helping seems somehow so wrong that even I can’t find the words to fully explain it. It takes a lot for me to ask for help, even to ask him just to fetch me a glass of coke somehow just doesn’t sit easy. A couple of weeks ago I told Adam that I really did need his help in one area, one that was needed not due to any physical problems but more a physiological ones. For months I knew all too well that I just haven’t been doing things that needed to be done, I always somehow found a way of ignoring it and when I couldn’t ignore it I would put it where I couldn’t see it. Even when it was something as simple as a letter that required a signature and putting into an envelope for Adam to post, I would put the letter under a pile of stuff, or in the kitchen folded so I couldn’t see the details waiting to be done. Just like having a shower, I keep putting things off, moving it into the next day or the next day after that, so I asked Adam to take on the task of pushing me into action, to not allow me to put things off and if that meant him bringing a letter to me with a pen and sticking on my lap, then he was to do it.

I used to be so organised and so precise about everything, that finding myself now in a position that simple things are running away with me, is so wrong. As I said to Adam my life has now got this huge block in it as I now “just don’t do”, anything that needs to be done isn’t and I can’t any longer trust myself not to put off everything for a crazy length of time. Having to admit that this area of my life now needs to be in his hands was a huge step for me to take, so far he is still only gently reminding in his own way, his first attempt still took me 48hrs to comply. He left a letter sitting open on the kitchen counter needing my signature, but said nothing, so I did nothing. Clearly some connection in my brain is playing up, but it’s so bad that without help I honestly believe I am heading into a position of doing nothing at all ever, other than sitting here, or sleeping. It is actually really hard to hand over that type of control to someone else, even if they are the person you love the most in the world, I have given him permission to take on what I suppose is the role that a parent would usually be in, pushing their kid into doing what they should each day. I know that this is only the first of what will be a growing list of personal things that I will eventually have to put into his hands.

I know that there is diagnosed damage to my brain, diagnosed about 9 years ago as progressing, I haven’t asked for more tests as I don’t need them, what it is doing to me is clear for all to see, knowing this is not me doing it, doesn’t make it any easier. I know that lesions don’t actually eat your brain, they more block of connections and as they spread they remove more and more, if you want to find the most scary thing about MS is, well it’s right there. If a limb stops working there are aids, braces and son on, a list as long as my arm of things you can do to cope with what has happened. When areas of your brain stop working, well all there is, is others people’s brains to fill in the gaps. Whatever the chronic condition is, there will in time be for all of us things that we just can’t manage any longer, some of us, like me, are lucky to have someone else who can keep an eye on us, push us, make sure we are safe and that we are as well as possible. Despite everything, I know just how lucky I am to have someone who cares so much that they are happy to be there for me.

Please read my blog from 2 years ago today – 25/02/12 – Changing Life 

I woke up this morning tired, not how you are supposed to feel after 9 hrs sleep, I guess that means I will be tired all day. I actually can’t remember the last time I woke up feeling really great and bouncing with energy. I remember that great feeling of a new day with expectations of things to be achieved and…..

Learning steps

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I had an amazing response to the post I wrote a couple of days ago where I posed the possibility that trauma and abuse could be at the trigger to autoimmune conditions. So many just confirmed what I believe, none actually said it didn’t fit for them but I honestly think that one personally traumatic experience can make your hair fall out, well it is just as easy for it to trigger those illnesses we are all too familiar with. From 2 years of personal experience and contact with others, if I can build a picture, why can’t those who work in the field all their lives? I often think the problem is that doctors seem to still believe that physical illness has to have a physical trigger, if they can’t find a cell, virus or something broken, they are lost. I have never once been asked about my past, not once been given a questionnaire about past illnesses or lifestyles, nothing that I can remember other than standard test connected to health have ever been done. If no one is looking at the picture outside their stethoscope and microscopes, how can they discount or prove any other possibilities?

I have given myself a new challenge and for me, it is a biggie, nothing to do with health just to broaden my knowledge of something I love history. In secondary school history was centred around world war one, but they were determined to thump into us nothing but dates of when battles happened, nothing to bring the war alive in our minds in any way. The result was that I really hate world war one, even though I love documentaries, if one comes on about WW1 I change channel. So here is my challenge is to fall in love with WW1, just as much as I love the medieval, Plantagenets and Tudors, Ancient Egypt and WW2. It is a huge challenge believe me, but this is the best time to go for it as there is so much planned to be on TV in the next 5 years that the opportunity is at the best it ever has been. I honestly believe that our Schools have managed to put children off more subjects than they have inspired to actually learn about them. The sad thing is that so many leave school and never try to learn more, or to correct the damage that was done, I have always tried to keep learning, hence, my list of historic eras and people that I now love, being housebound has to be the best opportunity that anyone will ever have to learn. I can hear a lot of voices asking “Why?”, “What good will it do me?” Just because you can’t use the knowledge for a future job, doesn’t mean there is no point. It is actually amazingly uplifting to discover you can firstly still learn and secondly, that almost everything out there you could choose to learn about is interesting, even science.

The really big thing about learning as an adult is you don’t have to sit exams, so those exact dates, don’t matter, nor do you have to remember the entire periodic table, well unless you want to. Learning as an adult is about absorbing knowledge about what interests you, without the fear of not being able to dictate it word for word. All you have to do for a start is to watch a few programs or documentaries to see what grabs you, then well you just go from there in any direction you choose and it’s fun. There is nothing like discovering a new interest and with so much time in which to explore that interest, you simply can’t loose. Keeping your mind active is one of me personal biggest beliefs for surviving illness, achieving personal goals are my second, so learning something new is tailor made for keeping you feeling alive and connected to life and best of all, it’s FREE. Between the TV and the internet, you no longer need textbooks or trips to the library, everything is there just waiting.

I have had millions of people trying to tell me over the years that you have to stay positive, or be strong to keep going and that I need to fight this illness, well sorry they are all wrong. Surviving illness is all about not forgetting to live, life isn’t false smiles, mental or physical strength, or even about wearing boxing gloves all the time, life is about growth, fun and happiness, illness doesn’t change that. I’ve got this far because I have done everything I can to keep “living”.

I know that those of you at the start of learning to live with chronic illness will read this and go well it’s all right for you to say all that, but I can’t. I remember all to well the first few months after I was diagnosed, just feeling as though my entire world had just been pulled away from me. I was still working, still getting on with things but inside I was letting myself die. It was me that was dying, not my body, not because of my illness, but because I had stopped really living. I had already spent 20 years living with it, all that had changed was it was now progressive and I had a name for it, nothing else. It took me time to realise that I was the one who had given up and I was the one, the only one who could change that. Trial and error has found me with a life that I am happy with but when I look at what makes me happy, well it is those simple things that always made life happy, doing thing, learning things, expanding everything all the time to take in just that bit more of everyone’s lives. It may not feel like the right route for you, it might not be, but until you try, how will you ever know? Don’t try anything and absolutely nothing will ever change.

Please read my blog from 2 years ago today – 24/02/12  – MS Brain Fog 

I can’t seem to settle today, I have been flitting from one thing to another and I really don’t know exactly what I have been doing to get me from 7:30 to 11:00. I can see little to show for my time and little memory of what I have been doing. This isn’t unusual, just annoying. I sleep for around 12 hrs out of every……