The hardest thing to lose

I often wonder what it is that brings people back to my blog over and over. To me, I am just another person, one among millions around this world who are living with a range of illnesses and housebound. I am sure that each and every one of them could if they chose, write exactly the words I do, yet here you are reading mine. No matter how I try, I, personally don’t get it, but I wouldn’t would I. I don’t think any of us truly understand how others see us, but for me it goes even deeper. I don’t understand what anyone sees in almost everything, especially the so-called popular. Just as I love to burry my mind in yet another documentary about the “Somme”, even a repeat, rather than a soap opera, I never understand what draws more than one person to anything. When almost everyone out there says that the “Beetles” were an amazing band, I don’t hear it, above average, to me is even stretching it, worth listening to, never, and it’s a pattern that has shaped my whole life. It’s not just music, it’s everything. 95% if not more of what is popular, I just can’t get my head around. It can be anything, fashion, food, music or anything that you can think of, my taste just doesn’t agree with the rest of the world. My parents used to think I did it just to be difficult, but I never have and I never would. How many kids do you know who hate both jelly and ice cream? I wanted to be sick at the very thought of them and still do. I have grown to believe that I was born different, that is the only explanation that I have ever been able to come up with, but that’s not an answer.

Once I had my freedom, when I was finally allowed to be myself, I took it to the fullest expressions of it that I could. It’s hard to explain just how wonderful it feels to suddenly find yourself aged 27 and not having a single person telling you what to wear, how to look, what you can eat, or do, or even think. When I left my first husband and I had my freedom, with nothing to prove, I thought that my entire life would be just like that, free. That there was never going to be the slightest chance that anything would limit me ever again. I didn’t care if people stared at me, thought I was mad or even called me names. I was me and I was going to be exactly that. To me they were the odd ones, they were the ones who were willing to be dictated to by society as to how they were going to live and look. I felt sorry for them, not being able to see the possibilities, the invigorating freedom in totally creating yours and you alone, was the only person who had to like it. I couldn’t believe how so few could even see past it, or were even willing to try and look past it. What did they think they would find? I wasn’t that different from them, inside we are all identical, it’s only our thoughts and our self-education that creates any differences at all. How different can two people really be when they have been brought up in the same society, the same country, having passed through the same education system and been open to the same influences, like them or not.

In the early 1990’s, I proudly showed my tattoos, which kept growing and spreading, but that alone without my jet black and scarlet streaked hair, was enough to have people move out of my way. What was I going to do, infect them, or stab them, I was a woman in my late 20’s politely spoken and educated, but all they saw was my outer image. It’s an image most wouldn’t be given a second look now, but then it was totally different. For me it wasn’t about shock, it was about creativity, design, personality and that big word freedom. I appeared to live the wild life, but the truth was the opposite, I had a job, a good job, a nice flat and I was proud of it all. When I chose to retire as a DJ and to join he business world when I reached into my 30’s, a simple white shirt and a suit covered the ink work and I toned my then black and violet hair down to it’s natural dirty blond. No one ran away, no one gave me odd looks or once shouted abuse, and all because of a suit. This world is so wrong, so bigoted and so cruel, yet outside of the office, I was still me, in it I was a sales women and I was going somewhere. I just didn’t realise that all to soon that somewhere would be on wheels.

I had this image of myself in my head, well into my 60’s still turning heads with looks of anything from shock, to laughter, to disgust, sometimes disbelief and just occasionally admiration. I had every intention of living eccentrically right through whatever time my health was willing to give me. What I hadn’t realised was that there is one thing you can’t avoid when your health disintegrates and that is convention. When your nervous system is so screwed up, that that long planned and half completed full tattoo back piece, just can’t be finished. To go from lying there letting them work both lines and colouring for hour after hour to not being able to deal with just five minutes, destroys every plan you make. I spent hours drawing and designing what was to go from the base of my neck to the back of my knees. None of it was completed, most of it down to my waist is there, but there was still more work to be done. Like so much it is incomplete.

I was under no illusion that I would still be wearing short shorts and thigh boots in my 60’s, no I had already been recreating myself for that far in the future. I had this plan of a stylised Victorian, complete with corsetry, but not heavy thick materials, more chiffons and laces, layered and soft. For winter, I saw high collars, mutton sleeves and thousands of velvet covered buttons all of it with a twist that would have made it look like nothing a Victorian would even recognise. I never allowed for the fact that the last outfit I would ever make was my wedding dress, and even then as I worked on it, I often struggled with the beading and embroidery, at the time I just didn’t know why. My work was fine and done with love, hundreds of hours for just one day. That though was nothing new, I had done so for many outfits, most not worn again, but unpicked and turned into something else.

So there I was in my early 40’s sat in my wheelchair, dressed in black knitted mini dresses and thigh boots summer or winter, my hair an acceptable shade of purple and enough jewelry to sink a ship, and that was just in one ear. I was me, I was the person I was born to be illness or not and I knew how to express it without fear. The business world had accepted they couldn’t reduce me and I showed them a little respect in return. I didn’t see that those where my final years, that all I had created was about to be destroyed as somehow my health stole me. I didn’t even see it happening, it just did and I lost everything in a flash.

It’s hard to explain how my health took all that I cherished, how it reduced that carefully crafted person and equally crafted future, to a mere shadow, if not less. At first, it didn’t, at first when I was trapped at home I still maintained me. I wore wonderful black nightdresses, a mix of vintage and new, but all with that twist from normality that meant none would place them as average. They became too hard to wear, to uncomfortable and even difficult to put on. Laces and buttons defeated me and comfort became vital, design slow grew less and less. The weight started to appear where I least wanted it, that once size 8 to 10 figure ballooned and all I wanted was to hide it. I stopped caring about anything else, it just had to be hidden. I can’t use nice words like draped or layer, as the truth is it is just baggy too big, soft and comfortable. Style doesn’t exist anywhere on me at all. My hair may be shocking ultra violet purple, but there are no braids, no beads, no lace or ribbons, it’s just long and there. The silhouette that I once prized is nothing but a series of lumps, each blending into the next. I am too tired, in too much pain and can no longer be bothered to even try to fix it, I don’t have the strength to spare on something so ephemeral as appearance.

I no longer care about food being tasty or special. Those once longed for flavours of the exotic and rare has turned into what’s needed to keep living. Likes and dislikes, well they can’t be changed or be fought, as always I still would rather not eat anything than eat what I don’t like. That though is going to be a growing problem, as the less I care about eating, the more others will try to make me eat. I know right now, if you showed me, for example, a standard hospital menu, I wouldn’t find a single thing that I would consider edible. Many restaurant menus, even from a good restaurant has the same issues. My taste in food is as unusual as my once appearance. Take a simple steak, I like mine blue, with mushrooms and french mustard, but I still rather have a lightly sauteed calf’s liver and onions, than any steak at all. I don’t understand how people eat things like sausages and mince, or fish fingers, baked beans, pies and most other foods that fill British supermarkets, what happened to food, good food. Now a plate of sashimi or sushi that I would enjoy. I can’t get out there to go to places where I could buy what I call “real food”, even if I could, well I can’t prepare it. With every progression of my health, my enjoyment or interests of food diminishes and I can see the battles ahead growing.

When you’re different, when you’re out of step with the world, as long as you are fit and healthy, as long as you can do it all, life is a joy. If I were to say what I miss and what the hardest thing about being chronically ill and housebound, it’s losing me and being totally unable to do a single thing about it. Being me was creative, being me was individual and strong, all things I am no longer, yet you all still keep coming back to read what I have to say.

Please read my blog from 2 years ago today – 28/09/2013 – A missing clue in time 

Things are wrong just now, I can’t really put this into words easily, I have been trying, trying to formalise it clearly so that I can at least explain it to Adam, but the more I try the more it remains a muddle of what I don’t know. Things are just wrong, very wrong. I can sit here on the side….

We’re not all the same

As I was near the end of yesterdays post, I suddenly veered off into a new subject, one I realised was going to take more than one paragraph to compete, so here I am for once with a subject before I even started writing, weird. I closed yesterdays on this paragraph…..

Adaptations to life are the things that I find most annoying about this whole MS thing, the things that other with breeze say, “well this is what you have to do from now on”, as though our likes and dislike were irrelevant, or the fact we had tried and failed, wasn’t possible. Having any condition that butts heads with your life, seems to mean your life stands for nothing and we should be grateful that someone who knows nothing about us, has thought up a so called solution.

…. you see that is a problem that I have come up against over and over, yet I have never found a way round, or the reason we have to put up with it. Because we live in the UK and don’t have medical insurance which would allow us to get treatment out side of it, we are at times treated like second class citizens and at others as a complete nuisance. Don’t get me wrong, I am extremely grateful for everything they do for me and I know how lucky I am to live in the UK in the first place, there are countries where if I didn’t have insurance, I wouldn’t be treated at all, but sometime people need to make their point and see what happens. As I have said over and over most of the care I have had, has been great since I got my diagnosis, anything but before, but once they pinpointed it things have mainly gone well, but when they go wrong, they do so in ways that leave you feeling like you are to blame.

I have for a long time had issues with being able to eat and despite tests, the only answer seems to be my MS, in the early stages a few years ago, I was sent to see a specialist who put me through test after test, some showed nothing and others confirmed that I did indeed get food stuck in my throat for both short and prolonged periods of time. They wanted to see if my stomach was emptying and I was sent for yet another test, when the appointment arrived it came with it a leaflet explaining the process. As soon as I read it I saw two huge problem for me and phoned the hospital to check if there was a way around them. The first was that they wanted me to eat cornflakes, I haven’t eaten breakfast cereal since I was a child, I quite simply hate the stuff and I honestly don’t understand how anyone eats them, I called in hope that there was some other food that I could eat for the test to still work, they said no. I also told them that I had problems eating any large quantities, but they said all that was needed was a small bowl of them, not happy, I put the phone down resigned to the fact it wasn’t going to be pleasant, but I had to go through with it. In my head I had it sorted, I could sit there and eat them as I had when little, but big enough to get my way, without milk or sugar, just dry, it was the only way I ate cereal until I left home, then I never ate it again. When I got there it was worse than I had been led to believe, firstly the bowl wasn’t what I would call small by any means, there had to have been at least 8 large handfuls of cornflakes in each bowl, set out on the counter, I spoke to the nurse who told me they had to be eaten in 5 minutes, I hadn’t even managed a slice of bread in under 15 for months, I was ready to try, but not happy and not sure if I could manage, what do radioactive cornflakes even taste like? Them the radiographer appeared with milk and sugar, I asked if I could have them just as they were, the answer wasn’t just no, but it was followed by a torrent that implied that I was being stupid and difficult and I should just eat them and get it over with. I left.

That is just one example, I have come up against it again and again and again, not just over eating but even when I was sent to have a stress test done on my heart, when I arrived in a wheelchair and couldn’t manage to walk for more than a few yards, they were incredibly rude to me and told me it was pointless unless I was going to try. I could sit here and list and list, even down to the wheelchair department who refused to come to the house to sort out a new chair for me, when I was first housebound by my arm and I still believed that I would be mobile again, they said once I was, I should go to them. 3 years later they phoned me to arrange a scheduled assessment and when I explained they where happy to come to see me, just to tell me they couldn’t help as I was now housebound. I am still touching the tip of the iceberg, but by now I hope the picture of my frustration and disappointment with some of the so called care that I have received, nearly all of it could have been avoided with a little joined up thinking, but other parts of it scream of something else, it screams of the “this is the way it is done, like it or lump it” attitude. In the case of the radio active cornflakes and the stress test, it is down to lack of thought to one simple thing, people are different, we aren’t clones that comply with a set of plans that mean we are identical in likes and abilities. Where is the law that says cornflakes are the only food that can be made radioactive, or that treadmills can’t be wide enough to take a wheelchair.

What hurts the most about these and others is that I was mad to feel as though I was simply been difficult, or that if I couldn’t comply that that meant I didn’t need the test at all, as if I did I would have done it, even people in wheelchairs have heart attacks. Despite the NHS’s view, the world isn’t a one size fits all reality, we all have abilities, likes and dislikes, styles and personalities that make us different people. I know I have spoke about the utilitarian aids that would only look at home either in a hospital or possibly a 1970’s house, they work but do we all live in either? Please show me the person who wants to pushed around the streets, in one of those small wheeled red PVC covered hard wheelchairs they use in hospital, exactly what I was given when I was first finding it hard to walk, it took 2 years to get a proper wheelchair as I was in danger of loosing my job. The longer I have been diagnosed the more and more I have discovered this you should be grateful for anything we offer to do for attitude. I am quite sure that I will find it again in the future but is it really asking too much to be treated as an individual and for our lives to be made as pleasant as possible, despite our medical conditions.

Years ago I used to see people in wheelchairs, always for some reason badly dressed and with really bad haircuts, I made a point of not fitting into that mould and luckily these days, more and more of us are refusing to be cast in that image.


Please read my blog from 2 years ago today – 29/11/12 – The problems of winter

My whole day is going to be centered round drink a horrid gunk that will flush my guts out, 1 litre to drink this afternoon at a pace of one glass every 15 mins, of course they don’t say what size glass, I would prefer to get it over and done with so I will use……

A plan for life

Adam came home last night from work with what he said was a small gift for, not unusual in any was as often he comes home with some cheese I love or something or other that he knows I enjoy to eat, in the past few years since I have been unable to just pick up something for myself, he has taken over the impulse buying for me. Last night I knew from the tone of his voice that he had once more found something he had brought home in expectation of giving me a small treat, so I headed for the kitchen to see what he had bought. I always do this with a slight hesitation as there is one huge problem, one summed up beautifully by what he bought yesterday, a small tub of ‘Strawberry creamy yoghurt’. Despite having lived together now for more than 14 years he has unfortunately a really bad memory of what I like and don’t like, yesterday was a double whamy, I don’t like either Strawberries or creamy yoghurt. I did at first when these small gifts arrived to accept them graciously, but I realised there was a problem there as he then bought more of it, in the miss guided belief that I like them, or at least that was what I thought. I felt it was better to start telling him the truth over a year ago, but still things I don’t like come home with expectation, that I will be happy and will enjoy them. As I said to him last night I am building up this vision of the future when he will have to prepare my meals and possibly even feed me, that the menus will include all his favourites, Chicken and mashed potatoes with soggy vegetables and a desert of Strawberries, all things I hate. It made me think again about something I wrote about last year but I didn’t actually action, just suggested it and went on without another thought, it’s what I can only call a detailed care plan. I guess we all expect our partners to actually know things like the foods we like and how we like them prepared, but I think the truth is probably far closer to the one I have just described. I guess we all know our partners favourite meals, including Adam, but if you are not the one actually buying the weekly shopping, do you really know what they would like to eat, not just tomorrow, but for the rest of their lives?

I guess that is time for me to actually start putting together the document I had in mind, it’s not just about food, but it’s about the details, the things we do for ourselves daily when no one is around, the way we like to dress, the scents we enjoy and what sorts of soaps, shampoos and even hair dye we would buy for ourselves. I call it a care plan but it is far more than that it is a life plan, the life we would choose to live if it was at all possible to, I know that it would never be carried out word for word, that would be far to much to expect of anyone, but it would ensure that our partners and even medical staff would at least have a chance of making us happy and of not having food constantly spat out at them. The more thought that I put into it while just sitting here, the more details I am coming up with, they are the things that I believe I know about Adam but just as he thinks he knows about me, would probably turn out to be wrong, that’s just it though, we all like to think we know the person we live with, but the reality is so often wrong. There used to be a really bad quiz show called “Mr & Mrs”, couples where asked questions about their partners to see just how much they really knew about each other, the result was all to often, not very much and the were only asking questions about things like favourite records, not the finer details we all so easily miss, but actually make a huge difference to that word happiness.

I also think that it should contain not just likes and dislikes but it needs to contain all those silly little things that we are all embarrassed to talk to anyone about, even our partners but once you are no longer able to care for yourself they will have to know about. Until I mentioned it in here I don’t think Adam had ever known that the scar from my hysterectomy had left me with an area of skin that needs looking after constantly. Well you don’t sit and talk about how if not kept clean and dry it can fester and become smelly, painful and simply disgusting, but when I am no longer able to care for it, it will fall on him to. I guess there will be many of us who have all sorts of things that fit the same bill, important, silent and secret. It is all to easy to go through life pretending that the worst will never happen, but chronic illness makes you face up to it far sooner than most would like to even admit to. I see now that once we have made that step into being housebound, our lives are hurtling with disgusting speed towards that point when it isn’t us but others who will be living it for us, and us through them.

I have tired again and again to talk to Adam about those subjects that we all face in time, but he chooses to talk for a short while then ends the conversation as though once ended it won’t happen. I equally close off some that have no point in being spoken about as I have made my feelings known many times before. We are equally guilty, but that’s the truth of many relationships, neither wants to hurt or distress the other, so nothing is said at all. I guess that is why my idea of a “Care Plan”, which yes I am going to change the name to a “Life Plan” as the bulk of it is about living, is the only way that my needs, want, likes and dislikes, will be there when they are needed. I also want to add into it a section which is more about dying rather than living, it is a description of the point I don’t want to be kept going after, just for the sake of another heartbeat. I suppose a life plan can contain anything that you personally feel should be in there but most of all it is about what you need to live contently, I guess it’s time I started drawing one up and filling in everything bit by bit until I am happy with the result. I also guess there will be a few who are reading who should also start planning their lives as well.