Through our eyes

I have always thought that it is a good thing that we all have our own personal image, not just in our heads, but even in our mirrors. If I had trusted and believed my mirror, I would have been heading to the surgeons asking for chunks to be cut off, for no other reason than they looked wrong that particular day. I believe that we all have a very mild form of body dysmorphia, which for us, is a good thing. The proof is simple, we can look in a mirror and think we look wonderful, then see a photo even just days later, and see ourselves as everyone else saw us, the two images, just don’t match. Which is just one of the reasons, that I hate having my picture taken. Yes, I know I have some great pictures of me, but those few somehow captured what was in my mind, rather than what was in the mirror. Mirrors, normally, live in a space where they are bathed in bright sharp light, great photo’s, are blessed by great lighting. How we see ourselves, be it in our favourite mirror, in our heads, or in those pictures, always matters. It doesn’t matter if you are a teenager or an old fogy, we always know what we want to see, and for the majority of us, we always want to improve it.

I thought by now, that my arms would be getting just that little bit stronger and that I would be seeing the results in my upper body. It is now well over 2 months that I’ve using my wheelchair, even though I knew my arms had become severally weakened over the years, I thought, there would have been some improvement. There is a tiny one, but so tiny, it’s hardly worth admitting to. I’ve never done any research as to the effect of exercise on muscles that are being attacked by both PRMS and Fibro, I just based my expectations, on my own history. It’s about 8 years ago, that I for the first time used my wheelchair, back then, there was a marked change within the first month. Not so much in their strength, as I had always had good upper body strength, but they regained their tone. After years of carrying incredibly heavy record cases, plus having been keen on exercise of all sorts, I just stopped. A change in lifestyle, thanks to my work, meant all of it stopped. I gained half a stone in weight, and my body tone rapidly felt as though it went south. I had tried to do what I could, but I was by then sat on my backside on a phone for 8 hrs a day and walking the mile and a half there and back, just wasn’t enough. Then when my health went into rapid decline, the exercise levels fell off the planet, as my legs were badly affected very quickly. It had been 6 years since I had last been happy with my body, so seeing at least my upper body tone reappearing, was a joy. Not too surprisingly, when I sat in my chair again 2 months ago, I expected at least a small improvement. I know I am at the age where bingo wings begin, but I just hoped they might retract a little, but nothing.

So, OK, my house isn’t the size of a call center, but all of that taken as fact, how is it, that in a smaller space, I have managed to do what never happened at any time, ever, before, I have destroyed my hands. It appears as though life still finds ways to laugh at me, even when I’m locked away from it. No muscle improvement, no new strength, just hands who’s knuckles find it hysterically funny, to jump our of their sockets and cause indescribable pain, just because they now can. If that wasn’t enough, the tendons in my forearms have also found their voice. I had such high hopes when I asked Adam to bring my chair out of the cupboard and to give it a clean. I thought that I had found the answer to legs that collapsed and bingo wings in one. Well not just the wings, using a chair, tones right down to your stomach, they really are the perfect upper body workout that has ever been created. Yet here I am, with not the slightest sign of anything good happening at all. Since I became housebound, I have found it totally impossible to lose weight. I do so little, that it is just physically impossible to shift even a pound. Thanks to the pain that is throughout my body, conventional exercises are out of the window too. Even the physio’s won’t prescribe any form of exercise for me, as the balance between use and pain, is so fragile. I had my fingers crossed that removing the strain from my legs, would mean energy wise, I could shift to my arms, but with an extra positive twist. That twist is totally missing and it’s is so annoying.

For my entire diagnosed history, the effect that my health has taken on my looks, as been a roller coaster. The first few years, the weight piled on. Then I lost the ability to eat for nearly four years. I lost so much weight, that I landed up with a gastric tube as I weighed just 7 stone and I was on the verge of malnutrition. My clothes sizes had gone from my normal of a size 10-12, up to a size 16 and crashed to between a size 6 and an 8. I am talking UK sizes here, a size 6 is nothing, the literal skin and bones, with the emphasis on bones. Since I became housebound, up my weight went past my norm and on, it’s held at 18, which to me is huge, ever since. I hate what I see in the mirror as much as I hated the size 6. This is why I say, I think we all have a touch of body dysmorphia, as I usually didn’t see the 6 any more than I always see the 18, I’m still a 10. I know without a doubt if my health hadn’t stolen my body, that size 10-12 is just where I would be. I also know it would be toned as that is just me, I never let me body win, it did as I said or else. I know I am not alone when I say, that in some ways, the cruellest thing our health can do is to change our looks, and to remove the control we had over them. I may have all the time in the world now, but I can’t do a single exercise to help with what I see.

None of us want to be anything less than the person who lives in our heads. We want to measure up in every way, not just looks, but looks is what the world first judges us on. That’s why it’s extra cruel, we’re being judged on something we have no control what so ever on. So OK, if I were to make a list of the horrid things my health had done to me, my looks wouldn’t be the uppermost one, but it wouldn’t be far below it. It isn’t vanity, it’s about being a perfectly normal human being. Show me the person who doesn’t brush their hair and look in a mirror before they leave their home. There isn’t one. I can show you millions of people who say they can’t do anything about their weight, or the flabby muscles, their liers, they can. When I was 19, my weight ballooned to 18st 6lbs, I was pregnant and OK, over 11bls of that was the baby and a huge amount was proved to be fluid, but I still had 4 stone to lose. I lost all of it, and never, put it on again, we can normally all do it if we are determined. We are the real deal, that small number of people who really can’t do anything about it, and it’s just not fair. Just because we have an illness, or even a rather large collection of illnesses, it doesn’t mean we don’t want to be who we believe we should be. We can switch off that part of our brains, that keep telling us that we can be, or still are, that slim, well dressed and smartly turned out person we always were. In our heads, we’re still there. All those years of dieting, exercising and doing everything right, with the plan of long healthy life, were for nothing.

In my opinion, there are just too many brightly lit mirrors in this world, for us to be able to forget what the truth is. Sadly, it doesn’t matter how many times we tell ourselves, or others tell us, that it’s not our fault; that they love us regardless and always will; that we’re not the ones all those ads, and health warnings they roll out on the news about obesity, are aimed at; it’s always going to hurt, it’s always going to feel unfair. I can joke about it. I can even be positive about it. I can set my eyes to history and see what I want, but it doesn’t change reality. Nothing does.


Please read my blog from 2 years ago today – 30/11/2013 – Never alone

I made a wonderful discovery last night, nothing that will change the world but something that made me feel just that tiny bit more sane. Anyone who has a condition that effect their nerves will have had spells where their skin feels……

The time to give up

It’s just a weekend, another one out of a lifetime of weekends. Another day, that’s all life really is one day, followed by another day, yet it’s the thing that we hold onto, like nothing else, it’s our life. To an outsider, to someone who knows nothing about me, they might easily wonder what on earth am I holding on to. Bluntly, “What is there left to hold on for?” That exact wording and feeling behind that question would vary wildly depending on the age of the questioner. To a child, someone who is aged 54 should be dead anyway, they’re too old for there to be a point to their life. I can with ease remember thinking when I was a teenager, that I would be dead by the time I was 21. 21 was horribly old, past it and useless. I had seen Adults who went past that point and their lives seemed so dull, just drudgery. They never seemed to have fun, all they did was work or sit around their houses, surely that was a pointless existence. 21 was a good age to die. It was the age when your body was an adult, but not damaged by wrinkles or the other horrid things that life did to them. At 21 you were still young enough to be a beautiful corpse. Yes, I was an odd child for thinking as far as a corpse, but the rest, no, I knew many who felt that way about growing up.

At the age of 21, I had something that made my age, totally unimportant, I was a mother. My age, what I did, in fact, everything about me, no longer mattered, it was all about her, my perfect little daughter. I had grown up and somehow, I wasn’t old, I was just me. I still couldn’t imagine ever being old, not even 54, nothing to do with my childhood belief that life that old was pointless, but this was me, I was beyond that, I couldn’t grow old. I hadn’t even made it to 21 when I had already made up my mind, that no one should suffer, that we had a right to decide, just how much we could take. That ultimately, we should be allowed to call life to a halt, when we were ready. Having watched my first born fade and die, I understood better than many my age, just what death meant and just what suffering was. I expect, that if I had seen someone with as many things wrong with them as I have now, and who was housebound. I guess, I would have been wondering, “why?”, “Why haven’t they called an end to it? What could they possibly have, to stay on any longer for?”.

Throughout our life, more dependent on what is happening to us, than the true bigger picture, we look at the chronically ill and the dying in different ways. I can understand many might wondering what value, or what purpose my life now has and that doesn’t bother me in the slightest. It is one of those things that I have frequently thought about throughout my life, not just towards myself but to others as well, as what else is pity, other than looking at someone and thinking, what is the point? We pity because what we are seeing is a situation we ourselves couldn’t cope with, or at least believe we couldn’t. So, OK, people can’t see me, but that is probably the bit that makes my situation in life pitiful in the eyes of others, and I get that. I never once remember thinking about what it would truly be like to be housebound, not until I started to see that it was more than likely my future. I freely admit that the whole idea terrified me at first, but not maybe for the instant things that the youngsters out there might think of. They would worry most about the loss of all the social activities, the going to the movies, walking around the shops and spending time with their friends. I feared losing my job and not being able to pay the mortgage, that was my first fear and it terrified me. In fact, that was my very first thought when I first had it suggested that my MRI scan meant that I had MS. Not about the shortened life, the pain or anything to do with my health at all, it was all about how I was going to keep working.

I had been brought up to believe that we all had to do our bit in society, have a job, pay our taxes and generally do the things that keep the world’s markets ticking over. Sitting at home, wasn’t acceptable unless you had a child, then your full-time job was being a Mum, otherwise, you had to work. I know not everyone will totally agree with all of that, but the majority will agree with the first bit, you have to have a job, if you don’t, well your sponging off the state. The tax paying majority are pretty unforgiving, unless, they know someone who is a genuine case, but still, some aren’t convinced about the rest of us. I’m not sure what the exact split would be, but there are clear sectors. Those who pity, those who care, those who doubt and those who can’t see the point of us at all. I remember hearing someone, a long time before I was truly sick, saying to someone else, something along the lines of “Wouldn’t they be better off dead?”, they were talking about someone in a wheelchair. It stuck in my mind because it shocked me, I had never heard, or even come across, anyone, who thought that way before and I couldn’t believe, that anyone could. I was young, I know better now. Something on TV the other day brought it back and it triggered a run of thoughts, hence this post.

How we measure what is a good life, changes throughout our lives, from our teenage years on. As I said, I can easily see an outsider wondering what I am holding on for. It’s not as though there is a nice little equation that says this is a life worth living or not. No sliding scale or even anything to measure it against, other than our own personal experiences. Just as our viewpoint on other people’s lives changes, so does ours on our own, but when it comes to our own, it is far more subtle. It doesn’t matter what happens to us, we have a drive inside us to keep going. Long-term readers will know that there have been times in my life, where I lost sight of that drive totally, then, life wasn’t ready to give up on me, hence why I’m still here. Nearly 15 years ago, at a time when I thought my future had never been brighter, I was handed a death sentence and another just over 2 years ago. It is the oddest thing being told that life is giving up on you, and the ultimate proof it is the most contrary thing that exists. We might think that we are in control of it, or at the very least that we can take control of it, but we can’t. We might think that if we were to lose our health, but locked inside our homes that time would drag and all point would be lost, but it isn’t. It doesn’t matter where we are in life, what we have or what we don’t have, life will go on as long as it wants to and as long as we have someone we love, someone we can’t bear to be without, we will hold it tightly.

I still believe what I thought when I was 21, that no one should suffer and that we should have the final say, but once you are here, in that pain and at times suffering, we still have much to live for. Living with a ticking clock, having to swallow handfuls of drugs just to get through the next few hours, isn’t the worst thing that can ever happen to you. Oddly, just like the rest of life, there is much to learn, much to enjoy and much that means I still greet the new day with a smile. None of us can judge the life of another. None of us have the right or the knowledge to do such a thing. Both of those statements work both ways, only I have the right to judge my life and only I have the knowledge with which to do so. It’s not that I don’t want to tell you, or that it is a secret of some sort, it’s that I can’t. I could give you a list as long as my arm, at the top of which without a doubt would be Adam, but even my entire list, wouldn’t explain it. Ultimately, I don’t feel any different about living than I did 15 years ago, before they had even told me, I was in it’s closing phases. Even now, the truest thing I have ever heard said is “Life is what we make of it”.


Please read my blog from 2 years ago today – 29/11/2013 – One sided worlds

I woke early this morning as I was desperate to go to the loo, I really hate it when that happens especially as getting out of my bed without using the elevator although still possible is painful, but using the …..




The true meaning of life


Why does it take, the great trauma for we humans to learn the simplest things? It’s a question that unfortunately we only get around to asking, once we actually understand it. If I were to look for the greatest flaw in humans, I now know, exactly where to find it. It’s not even that big, but boy is a huge in its impact. It’s our almost total inability to listen. If we listened, we would understand life, rather than spending almost our entire lives walking around asking “What is the meaning of life?”. The most stupid thing is, all anyone has to do, is sit down and spend an hour or so, talking to someone who has lived with chronic illness, long enough to accept it. We know the meaning of life, we understand it totally, and we can tell you a million times, but will anyone listen to us? No. Yesterday, I asked a question on twitter to which a lady with RA answered. She sent me an extended tweet that repeated just what I have said, and what I have heard so many others say, but all too often, the only ones who listen, are the ones who already know. The meaning of life isn’t just one thing, but the briefest and most important part, is to simply to be kind and to love each other. The rest is found in those words and everything, that actually happens naturally when you do. As I said, it’s simple. If we did it correctly, the world would be a totally different place, but we can’t, we always think there has to be more, there has to be something we’re missing. There is, usually, it’s listening to those who have given you the answer already.

It’s OK, I’m not going to rant all the way through this post. I think I’ve made my point, but it isn’t really the answer that I wanted to talk about, it’s more how we get there. I know for one, that although I was by nature a caring person, I had one huge flaw, just like everyone else has. In my twenties, it earned me a nickname amongst my closest friends, they called me “The Bitch”. On first hearing, it doesn’t sound like a particularly loving name to be called, but I earned it because as I said I had a flaw, I all to often, spoke without the slightest bit of thought. Words just appeared out of my mouth, a somewhat similar process as I use to write, but with one big difference. I can change what I write, once words have escaped into the air, they’re free to go. 95% of the time, even when someone stopped me and asked me what I just said, I still couldn’t see what was wrong with it. It was really that innocent. It took me years, to work out why some people, kept their distance if introduced to me by a friend of a friend. I had always spoken my mind and I was surrounded as a child and as a young adult, by people who did exactly the same thing. If I had asked anyone in my family or my first husband, “how do I look?”, I knew that their answer, no matter how painful, was going to be the total truth, as they did if they asked me. Feelings never came into it. Clearly, we were all generally polite and nice to people we didn’t know, but close friends, they got the truth. So the better I knew someone, the blunter I was in everything I said. Hence “The Bitch”, but they knew I spoke plainly because I cared about them and counted them as friends.

When I worked as a DJ, I learned to run with it, crossed with my very dry sense of humour, it just kept growing and people loved the fact that I spoke my mind and didn’t shy away from saying anything about anyone. I became more and more outrageous as time went on. Trust me, when I was working, “The Bitch” was a title I truly deserved. It’s hard to put it aside when you have lived it for 7 years, but it didn’t go down well in the Business world at all. I manage to temper it, to bite my tongue most of the time, but it got me into trouble more than once. So what has any of this got to do with “the meaning of life”, well a lot? Those who thought they knew me 20 years ago, wouldn’t recognise the person who is sat here writing. No, I’m not just talking about my appearance, they simply wouldn’t put the words I write, as coming from the person they thought they knew. 20 years ago, I like millions of others, felt a great need to hide the true me. I hid behind a facade, I feared coming out from behind it and to show the world the person who cared deeply about almost everything. Part of the “me” the world saw had come out of self-preservation, I had been hurt deeply, both physically and mentally, hiding somehow equalled safety. I put forward a hard brassy edge, as it kept people away, the first rule in surviving, I hadn’t realised that I had turned my flaw, into a weapon. Few really got that close to me, those that did, well they really had to try hard, or there was something about them, that made me let them in. Even I know that the change is like chalk and cheese.

As you know 14 years ago, I was diagnosed with PRMS and Fibro, I suddenly had the reason for the dips in my health, the pain, fatigue and all the other things. Getting a diagnosis changes us all instantly, but it is a process that doesn’t stop there. Accepting our health and actually realising the truth of our future and just how ill we are, takes time. You don’t even notice the change to start with, or how your views on life itself are being affected. Some people at first become truly bitter, understandably to some extent, but others, we just shore up the walls and hide even more. It happens bit by bit, but those facades do slowly drop, we have nothing more to fear, we know what our future is and we start to put to rest our pasts. I can’t put a timeline to it, it wasn’t as though I woke up one day and just put the last traces of “The Bitch” to one side, in fact, the playful side of her is still very much here, but the eyes I see the world with are totally different. There is something about knowing you future and not having to worry about it any longer, that gives you a shield and allows you to explore your past. Bit by bit, I found myself able to work through it all and to start forgiving those who hurt me. That isn’t a once done all fixed process. It needs to be done over and over until they are totally put to bed. So here we are, our past freed and our future settled, all we have is the now. Life is too short to spend it sniping at the world, too fragile, to treat it harshly in any way and too important, to miss any opportunity to enjoy it. My health wasn’t just changing the physical me, it was changing the psychological one as well.

It’s not really that surprising that they say “illness brings out the real you”, it does, in more ways than I can even write about. I always knew that there was a caring and loving me inside, but she had been treated so badly, she didn’t know how to be that person any longer. She does now. The meaning of life, without a doubt, is to love, care and protect ourselves, those we love and even those we will never even meet. Life is filled with so much beauty, so much to enjoy and once your health is gone, all those things are amplified a million times. I got the double whammy when two years ago, I was told that I might just have 10 years left to live. Some might think that such a thing would make you angry that you are being cheated out of having a full lifetime, but when it follows all that change, it doesn’t feel that way at all. Some won’t understand, but for me, it just intensified the new me, it reinforced the importance of trying to make others lives better, bigger and brighter. People want to know what the meaning of life is because they can’t accept that it is that simple, but when you really think about it, it does make sense. To care, to love and to be kind, do them truthfully, from your heart and it is really a case of the more you give the more you get. There will always be the odd person out there who just doesn’t get it, who huff at our words, and sneer at our smile. It doesn’t matter how other react to us, they are still hurting, maybe one day, they will remember our smile and see it without suspicious question marks, just for what it really is.

Being ill, really does make us better people and if you don’t believe me, well here are the words that came in reply to my tweet yesterday.

I can honestly say that I became a better person after I got to terms with the fact that i have RA. I appreciate 90% more in life now, little things makes me happy. Saying nice things and compliment others makes me feel good about myself. I’m never sad when people don’t return compliments or ignore it totally! I get 100% love back when my neighbours says I’m a wonderful person and the prettiest girl in the neighbourhood! Im so grateful for little things now, RA has change my life completely.

Illness truly can and does make us better people, now the only problem we have, is how do we get the rest of the world to listen?


Please read my blog from 2 years ago today – 28/11/2013 – A happiness anniversary

Although still wishing for a 100 hours sleep, I find myself actually feeling rather upbeat this morning, not that I was on a downer before but exhaustion had a habit of removing all emotions and leaving you as…..

We can’t go back

The lead up to Christmas used to be my favourite time of you, unlike many, I wasn’t happier than buying presents for others. I took great joy in scouring the web for hours, for just one thing, that item that when I saw it, I knew they would love it. In fact, I would have been almost finished by this point in November, after all, there is so much to do between now and the day they would be opened. I was never content in just buying something, those presents, had to be constructed into the ultimate parcels, way beyond just a gift. Wrapped perfectly, no awkward corners or bulky folds, no layers of tape, just the least possible to hold them together and that was just the start. Then came the decorated with ribbons, small tree decorations, glitter, beads and anything else that I could add, just to make it that bit more special. To me, when a gift is placed in front of you, it shouldn’t be a case of ripping off the paper, the whole excitement and anticipation, should build. On first sight, it should be awe at the beauty, the detail and the care that clearly went into what is after all, a Christmas work of art. The sprigs of flowers and foliage, the ribbon arrangments and Christmas favours, longing to be kept with the same love as they were given. Deconstructed, into smaller sections, I have seen them appear as parts of Christmas displays in following years, hanging from trees, set over mirrors or picture, a reminder of the gift they once adorned. A gift is an experience, part of what Christmas is about and once the decoration is removed, you can eventually uncover the present within. It could easily take an hour for me to just wrap one present, and I hoped at least 3 or 4 minutes for the recipient to actually open it. I didn’t care whether it was a joke gift or the main event, every present was wrapped with the same care and the same love. The work that it took didn’t bother me, not until my dexterity started to fail and eventually the point was reached when I had to admit I was defeated. The year before I was made redundant, the present that were given out to friends and families, disappointed me so badly that I felt bad about even giving them. The contents, they were as good as ever, but their whole appearance was just wrong. I had been struggling for the previous 3 years, to decorate them at all, and each year, they just got worse. The next year, we decided that presents had to stop altogether, finances, just wouldn’t allow.

So here I am, at the time of year when I would be have been sat planning out in detail where every decoration will go around the house. What new ones will be needed to complete the look I am going for and sourcing an array of items to adorn my home and to give away with love, and I’m doing none of it. From what I have just said, you would think that I miss it all with a passion, oddly, I don’t. I miss it, in the same way, that I miss being ten years old, and spending my summer holidays in the swimming pool, or those precious few months after Adam and I met. Throughout my illness, as different activities have slowly become impossible, I have had people constantly say to me, “but you must miss it?”, it doesn’t matter what they were talking about, the answer is always “No”. For me at least, I have found that I quite honestly don’t miss anything that I can’t do, including going out. For some reason, “missing” isn’t a feeling I have, they are memories, just as being a 10-year-old is a memory, not something you can really “miss”, as life moves on. I doubt very much if it is just me that feels this way, I am sure there are many, but it is one of those things we don’t often talk about.

To be able to turn around to anyone and say, “I don’t miss a thing”, sound one of two things. Firstly, that they may think that I’m just saying it, to make them feel better about going out there without me as I’m perfectly happy where I am. Secondly, that I’m lying, trying to deceive myself, that I’m hiding from the truth, as how can anyone not miss everything they once had and once clearly enjoyed. I know how people’s brains work and the one thing, that will never happen is that they will take it, for exactly what it is, just a fact. I think the time I was asked it the most, was during the three years that eating was almost impossible. Just like everything else in life, you get used to it amazingly quickly. Having my gastric tube meant I was fed and I could stop worrying about the fact I was disappearing almost daily. Once that was dealt with, food meant little, I was being fed. Once in a blue moon, I would see something I wanted to eat, if I did, I tried, rarely managing more than a couple of mouthfuls. Most of the time, that satisfied my want, as I had had the taste experience and it was that, more than the food itself that I wanted.

Our world is so driven by the marketing man, that most people, find it almost impossible to believe that anyone, couldn’t actually not want any of the things that they offer. Which is why, I wrote the first paragraph as that was a very personal joy, something no one told me to do, not something I bought into, but something that came from me. If I can honestly say, that despite how wonderful it was, I actually don’t miss it, then hopefully, I am now starting to get through to the doubters. It doesn’t matter what it is, what joy, pleasure or pastime, we learn to live without them when our bodies decide that we are no longer capable. Add in, that the further away we get from the last time we tasted, felt or experienced something and the less we even remember it. There is a memory there, but tell me in all honesty, do you remember every day of your first year at school? No, you don’t, so why would I remember or long for things that I lost 5, 10, or 15 years ago. Life goes on, our memories fade and our desire to do them fades as well. If it didn’t, we would all still be bouncing around our gardens on polls with springs in them, and the last marketing many would have gone bankrupt years ago. There is always something new, something that replaces and something that compensates, even when you don’t believe that is possible in any way.

Ask yourself, what was your life like 8 years ago today? Where were you, what were you doing, do you remember at all beyond the general? Unbeknown to me, I was enjoying my final handful of days at work. I used to take 3 weeks off to cover through to January, the three weeks prior to that, I worked only 4 days a week. This was my last few weeks of freedom as in that January, my life would change forever, I was going to lose the use of my left hand and the start of my life indoors was about to begin. 8 years ago, was the first time that I struggled with those gifts, but the details, I don’t remember, so how can I miss, what isn’t there. If I could have a Christmas gift this year, it wouldn’t be to go back, but to be given something that would help me go on. The past is gone, it’s over, it’s our futures that matter and no matter what you do, you can’t recapture a memory, just make new ones.


Please read my blog from 2 years ago today – 27/11/2013 – Change the system

So many people say how much they have been helped by reading my blog as they have found a voice that says what the feel and relays the all the things that go along…..

Just a thought

There is no warning, not even the slightest one. Suddenly, I am tired. Bang out of the blue, I feel as though I could lie down and never get up again, but I know this tired, it isn’t real in any way, shape or form. If I were to go to bed, right at that second, yes, I could lie down, close my eyes and lie there for probably, up to an hour, but sleep, no way. I have known this for so many years, that I now have it nailed. If you were to feel it this second, you too would think that sleep was the only answer, but getting to that bed, would be one of the most exhausting journeys you would ever make. Your muscles would be wooden, heavy and hard to move. Every step, or in my case, every turn of my wheels, is painful, slow and leaden. Coordination is a process you are aware of, but not successful at. It is a laborious trip, one that less than half way through, you know, you shouldn’t have even started. If you are standing that danger grows, whatever you do, don’t close your eyes, no matter how they try to tempt you and they will try. It’s dangerous to close your eyes, as where ever you are when you do so, will feel like the spot you just couldn’t and shouldn’t ever leave again. As your eyelids fall, a wave flows through you, pulling you away from the conscious world, while heightening every sense your body has. Your entire body is suddenly alive and every centimeter of your skin is tingling. As darkness fills your vision, your muscles start to collapse and you are trapped between two worlds, ones which neither really want your presence. Rejected by sleep, abandoned by wakefulness and unless you are lying down or at least seated, you know, you will fall as your balance is gone.

It is right now that you long to feel an arm around you, another body that will take away the strain of movement, the fear of falling and that feeling of rejection by life, but you had better start praying that they don’t speak you. Your brain is so far away, that words are not there to be used. You feel almost drunk, but without the euphoria or that warm glow that alcohol brings. It’s not just your body that is affected, you have all the bad side of drinking, without any of the good. It is around about now, that you start to feel sick. Remember, all of this has appeared from now where, it doesn’t matter where you are, or what you are doing and there are no rules either about how long it will last. The final twist, no matter whether you go to your bed, or you stay up, you aren’t going to feel any better either way. Going to bed may seem safer, but for me, when the world is swimming and I feel sick, lying down makes things worse. Staying up, keeping your eyes open and getting on with life, is hard, but it actually is the best way to continue, as there is no winning, just waiting for it to pass, and it will when it’s ready.

I don’t know if that belongs to Fibro or PRMS, I have had equal numbers tell me over the years that it belongs in both camps. I don’t suppose that it really matters which, just that chronic fatigue exists. I can remember having spells of it right back into my 20’s, and it was one of the things that used to force me to go to the doctors looking for help. Not when it hit, hung around for an hour or so then vanished, but when it appeared and hung around for days. Almost every time without fail, I would be told, “It’s a virus, go home and rest”. When I returned a week later, I would then be told helpfully, “Viruses can take months to clear, I’m sorry theirs nothing we can do”. If one of them had just done a blood test, sent it off for proof, I might not have taken so many years to get a diagnosis, or if one of them read my notes and saw, that I constantly returned complaining about pain, well who knows. These days, well it varies, it can still hang around for days, or just an hour or so. The most common, is the sneak attack, the one that wipes me out and leaves me floored for a short period of time, maybe an hour of so, then vanishes as fast as it attacked. If what I described where to hit you right now, I know you would be totally shocked, but try and imagine, how it feels when it vanishes just as quickly. We are used to symptoms that build, that move in graduated steps, both in their arrival and departure, quite honestly, the fact that this doesn’t, is probably at first, the most distressing trick that it plays.

Like everything else, there are variations in its strength, what I described I would put pretty high on the intensity scale and almost exactly what hit me yesterday afternoon just after 2 o’clock, and it hung around until just after 4. I didn’t go to bed, as I said, nausea and lying down don’t mix well for me. I usually land up leaning over the edge of the loo wrenching at nothing. Trying to push through and attack like that though is tough. The temptation to just close my eyes and rest my head on the desk is great, but that’s no better than going to bed. I honestly think it the closing of my eyes that is the real problem. I have tried taking my antinausea drugs, but they don’t work that well on this, which just adds to my belief that it’s all tied to my eyes, not something physical. Mind you, it doesn’t stop my taking them, trust me you too would clutch at straws. The point of my writing this, though, wasn’t just to describe how it feels, or to seek sympathy, it does have a third purpose and important one.

In the UK, our government has been pushing to get those who are long-term sickness benefit back to work. If you have been reading my blog for a while, you will already know that I worked right up until 5 years ago when after working from home for 3 years, I was made redundant. Despite being housebound, I fought to try and find another job for over a year, then my health took a downwards turn and I was forced to admit, that my working days were over. I am a great believer that working if at all possible, even if it isn’t in our chosen field, is actually good for us, so in a way, I agree with them, but I don’t agree with how they have been going about it. Especially when it comes to those of us with invisible illnesses, as what your doctor and your consultant say about your health is of no importance at all. You have to attend a meeting where you are assessed by a non-medical person. I haven’t been asked to attend, but I have spoken with many who have, plus, I have kept up with the reports in the media as to what has been happening. There have been many horror stories, of people dying from cancer having their benefits removed and being told they have to go back to work, then dying without the support they should have had, within months. Equally, there have been many who have returned to work and managed better than they expected. Neither end of that spectrum, unfortunately, surprises me.

I wrote this because, I read a post from another person with MS, who had just been told, she was assessed fit to work. I don’t know, if she is or isn’t, what I do know, is she wasn’t a person who expressed herself with a great deal of eloquence. She wrote in great detail about her pain, and her difficulties with mobility, then in a handful of words she gave her version of the above. “I get sick, I can’t stand, I’m so tired, that I just want to give up. I can’t do nothing and I don’t want to. It just happens, like without warning. I can’t work like that.” I knew just what she was meaning, but if you haven’t lived with it, it sounds like nothing at all, something not worth a mention in any way what so ever. Her descriptions in writing about her condition were poor, weak and lacking in feeling. When you write, you have the time to add in far more flourish than you do in conversation. I was left feeling that she was being sent back to work, not because she was well, but because she lacked the ability to describe exactly, what her health, was doing to her, and the impact, that it had on her daily ability, to do anything. It left me wondering just how many people have been found fit to work, simply because they lacked either education or just the simple skill of how to express the reality of their lives. I have heard many times people saying that these meetings are unfair. I have also heard it said that the tests are fair and representative of what is expected in the workplace. Either way, there is one thing that is always going to be true, if you can’t express yourself, well and with confidence, you are never going to be fully understood. Everyone, even those who are supposed to be impartial, judge everyone, by their own personal standards, especially, when it comes to educational background. It shouldn’t happen, but the poorer the area someone comes from and the worse someone comes across, the more likely, is the assumption, that they are swinging the lead.

The “work capability assessment” isn’t a universal system across the UK yet, but this is a quote from the Guardian Newspaper  and refers to a study taken place in these areas, “according to a study that linked the tests to 590 extra suicides and hundreds of thousands of additional antidepressant prescriptions.” To me, there are only two people in this world who are qualified to say if I am able to work or not, me and my doctor. There are no other tests, other than those that assess us medically, that can be brought into this equation. I know, that my doctors suggested that I gave up work 5 years before I did. I believe if I had, my health now would be worse, but not everyone is like me. Whichever way you look at it. these assessments are wrong.



Please read my blog from 2 years ago today – 26/11/2013 – Hospital and back

I have been home now for a couple of hours now, just trying to catch up on all that hasn’t been done. I have to say the whole trip to the hospital went incredibly well, the ambulance arrived just when…..