Breaking the dream

I suppose that this is the time of year everyone finds themselves thinking back and remembering the Christmases they have loved the best. I have one huge problem with that, no matter how hard I try, the good memories of Christmas are severally limited. No I am not looking for anyone to feel sorry for me, there is nothing to feel sorry for, it’s just my enduring memories of Christmas is one huge disappointment. The first Christmas I really remember was when I was 10 and I received a grown up bike of my own, not a hand me down from my sister or one of my cousins, it was mine. It wasn’t until much later I discovered it was second hand and my father had repainted it, my family had more money than they knew what to do with, but new wasn’t a word they ever seemed to have discovered, even hand me downs had already had another life in someone else’s family. What I remembered most about that day, isn’t the excitement of getting a bike, it was the fact I was allowed to take it across the road to the park and to ride around for one whole hour. I wasn’t stuck in the house with the rest of them, all sitting around pretending they were delighted with the stuff that was now just lying on the floor, or fighting over what my Mother had chosen for me to wear that day, usually something horrid I didn’t want to even put on, but was forced into, which of course put a downer on the rest of my day. I had an hour, out in the cold, riding around the park along with all the other kids who had also received a bike. Christmas as a child seemed to have a set of rules that were never broken, the personal joy of my stocking, personal as we weren’t allowed out of our rooms until my parents said, so no one shared that time, that was ours, just the kids each exploring in their own space what had been left for them. Then the main presents, all other than the bike, long forgotten, then the fight over clothes, followed by the boredom of Grandpa house, with our one item each we were allowed to take with us and after the food, more boredom until we were eventually allowed to go home. Weeks spent hoping that that Christmas was going to have the magic I craved, for it to always turn out to be a damp squid.

It wasn’t actually until Adam and I moved in here, that I was at last in the position where I could try and truly fix Christmas. I did try when Teresa and Christopher were small, but I never really had the chance to do it the way I truly wanted, we always had to brake up the whole Christmas magic, by heading hundreds of miles to visit families, families who when asked wouldn’t make the journey to us. I wanted Adam and my Christmases to always have the magic I never found anywhere before, so each year I planned through out the months and bought through them as well, gifts had to be right, wrapped and decorated like those you see in magazines, not just a silly little bow, but beads, flowers and glitter, a present that sat and beguiled almost too beautiful to open. The house had to be decorated with an extravagance and opulence I had only ever seen in the movies, nothing was impossible and everything had to be beyond perfect. Three trees, one in each main area, hallway to welcome, kitchen to make you smile and living room to enchant. Lights, beads and garlands, cascading from every mirror, surface and wall space I could manage and all of it done over and over until it was just right. Three days of work, just to get the basics, right and hours of tweaking when ever I noticed anything not quite right, what it all cost in the end, I haven’t the slightest idea, but all I will say it thank you Ebay, I couldn’t have done it without you. Christmas day started with buck-fizz and a full English breakfast, then presents to open, done slowly to keep the intrigue for as long as possible. Our first Christmases were spent at Adam’s Mum’s home but once she left Glasgow, Christmas came home and our day was spent together other than a visit to his Grandmother, but as my health failed Adam would go alone, but our evening were spent together and that was when we tucked into a meal that had nothing but the best I could buy and could cook, Christmas was at last just right.

It’s been three years now since the last time the tree’s came out, or the decorations found their way out of their storage positions around the house, longer since we bought gifts or even sent cards out in huge numbers. Even the last Christmas I tried to make work and Adam took on doing most of the physical work and my decorations diminished to just this room, they felt somehow muted, not complete and much of their magic had gone. They just weren’t right and all the tweaking in the world wasn’t going to make them so, I didn’t have the energy or dexterity required to make Christmas shine. That whole Christmas season had a dampened feeling about it, I could get it to shift and I could find the slightest sparkle, not even from the tinsel and lights, they too seemed muted and dulled by the lose of all their friends. Every year I had bought new decorations to add to our display, to make our home just that tiny bit brighter and better, every year I had been building our future Christmases, there was a final goal one that I thought wasn’t just years a head, but decades and suddenly, that future was gone. The one tree, the garlands on the fireplace and the lights and beads spread around, were only a reminder of what was missing, not a joy as they once were.

I used to believe that it was my health that had stolen my Christmas, that it had destroyed what I had spent so many years longing for, like so many other things in life, I had a taste, a window of when things were perfect and life was working the way I felt it should. In so many ways, Christmas was the last thing that I had held onto, well into being housebound and even past being made redundant, but like almost everything else, it too was gone. Of course my health has played a huge role, the lack of energy means I will never be able to spend days doing something, just to be there for a month then a day of madness taking them down and packing them away for another year, but it’s more than just that. I grew up, I grew up and realised that the dream of Christmas is just that, it’s a dream and no matter how hard we try, dreams of that nature never can come true. I can no more step into Narnia, as I can create the image that is in my head and then make it live. I would say that is one of the things that my health has taught me, along with the real meaning of life and how important that life really is, it has taught me that no matter what our dreams are, we can only make them real if they are humanly possible, if their not, all we do is create a mirage and mirages don’t last.

I am a long way from thanking my health for making me see just how silly I was being about one time of year, but I will thank it for showing me that just spending a day with someone you love, yes with a few nice edible treats, can be as good or even better than a day you have spent weeks stressing about, that you land up so ill on the actual day, that it’s hard to be part of it. There may be no decoration, but it will still be Christmas.

Read my blog from 2 years ago today – 17/12/12 – Tomorrows reality

I think my lungs are just that bit better this morning, well I feel like I can actually breath most of the time. Once again I am hanging on the phone waiting to book an ambulance for Thursday, and I guess I might be waiting for a while, that is at least….., wow I take it all back…….

No words

It seems as thought the house is getting colder by the hour, it feels as thought the wind has been bustling past the windows and through the trees now for several days. It makes itself known when ever there is a lull in the volume from the TV and it’s wonderful accompaniment to the warmth found lying in bed waiting for sleep to take over. Winter has so many pleasures that being housebound generally means I miss terribly, I seem to be an odd one in that respect as I love all the weather conditions that most people hate. Cold isn’t a problem as long as you are wrapped up and ready to deal with it, although I have to admit that the wrapped up bit was a later addition, I remember clearly walking around Aberdeen in the depth of winter in Jesus sandals, which of course means you can’t wear socks, but worse than that I would wear muslin shirts, jeans and nothing more. Mind you teenagers don’t normally have enough brain power to see past the mirror which tells them how great they look, two feet of know and the cold is just a tiny problem, one that has to be ignored or the whole image is destroyed. Almost every bright memory that I have seems to centre around days where there is more snow than makes any sense to go out in, snow fills me with an energy inside that is only equalled by thunder and lightning. It’s strange the way life turns round in circles to steal everything that made it wonderful, growing up is such a pain, as life back then seemed so simple and so easy to enjoy, regardless the horrors it also held, there was always those sparks of magic that made it shine brightly with joy. Now I find myself turning up the heating and crawling into blankets to fight of what used to fill me with joy.

I guess that all of us as we grow older find the cold less and less appealing, I for one knows that as long as I have my feet and legs are covered and warm, the rest of me seems to manage OK, but even the slightest cold causes me to feel more pain. I have always found it odd how in all description and symptom list it clearly says that being too warm heightens all other symptoms, yet I hear again and again from others with MS that it is equally devastating to be too cold. I have joked often that I am like a precious orchid, that for me the temperature has to be just right or I start to wilt with the pain, joking aside I know that temperature is a huge factor in my well being, the Doctors can say what they want. I don’t know why I keep hoping that someone out there will actually take the time to talk to all of us who actually have to live with this illness and then write the truth.

The start of December for all of my adult life always brought with it two thing, both Christmas cards and both with the same inside, a cheque for £10. One was from my Mother and the other from my brother. This year I was determined that my cards would be with them before theirs arrived, so both were written and posted all in good time, but still neither appeared until yesterday, when only a card arrived from my brother. Christmas has always been that point in the year where we made contact, as small as it was it was our nod at being family, yet this year they have changed it. I know there is still plenty of time for a card to arrive from my mother but I find myself thinking more and more that that card will never come. There are just two possibilities, either she has become to frail to live in her sheltered flat any longer and is now in a home, or she is dead, either way I can’t believe that my brother hasn’t called to let me know what is happening. Adam said to me to just call them and find out, but I want to wait a little longer as there is still time for her card to arrive. I know it would be the most obvious thing just to pick up the phone and call first her number and if no reply to call his, but I don’t want to call and hear something that I should have been included in. So I am waiting and I will wait until Christmas day when I shall phone to wish him a happy Christmas and to speak to my Mother who should be there with him as always. Other than when my Father died a year ago now, the contact between me and the rest of the family since I became housebound had slipped away to just the odd call, from or to my Mother. It’s hard to talk to anyone once you have nothing to say, when nothing happens and you neither see or speak to anyone, all you can do is say hello, how are you, good dye. I know I can pour out daily everything that is in my head but conversations in my family never allowed for feelings, just facts, my facts are simple and there is only so many times you can say the same thing, “sorry nothing has happened”. So I wait to know which situation has occurred and why not a word was said to me.

Christmas past, present and future.

Adam and I were talking the other evening about the best Christmas presents we received when we were children, to my surprise I could actually only remember a 2 my “Tiny Tears” doll and my adult size bicycle. It didn’t matter how much I thought about it, other than one item that was in my stocking nothing else came to mind at all. The longer I thought about it, the more I also realised that it was the present in my stocking that I loved the most of all the toys I remember having. Thinking about it now it wasn’t anything that special either, a clear dome of plastic covering a rising yellow spiral on which you could balance a ball baring. It was then the fun began as you balanced it all the way up the path that the spiral formed all the way to the top, where it dropped into the middle to prove you had completed the puzzle. It feels like I completed that puzzle a million time and completing it again, just meant the fun began again as I tipped the ball out and started the trail once more to the top. Something so simple but I have never forgotten it and I guess I still rank it as the best toy I was ever given. I can’t imagine a kid today being impressed or even completing it once, as there was no great reward, or flashing lights, just a ball and a path to follow. I honestly believe that the worst thing that ever happened was the day they allowed companies to advertise toys on the TV, the world has become an I want society, rather than a delighted with what I got one.

For some reason it only hit my yesterday just how close Christmas really is, I guess when you don’t put up a tree or decorate your home, creating a countdown to the big day, it does just appear. We once again haven’t done anything other than post a couple of cards, no decorations, no presents, why, simple, no money. This is our third year spending Christmas this way and although the first one felt really strange, I have actually very quickly adapted to it. I have always gone over board in years past, mainly I think because it was a low key event when I was a child and I wanted all the magic, I felt I had missed. I wanted everyone around me to feel the wonder and to spend hours looking at the beauty of lights and decorations where ever they looked. Parcels had to not just be wrapped, they had to be tied with ribbons and decorated with small tree decorations to make them seem better than they could possibly be. Everything had to scream Christmas and welcome to all. Decorating the house would take nearly a week and each present half an hour, but it was worth every second because it was Christmas. So to be sat here on the 17th without the tiniest piece of tinsel and no baubles, well it’s easy to see why Christmas has crept up on me this year. I guess it is another one of those things that illness takes away, when you don’t have the money and you don’t have the energy, it just stops happening, like so many other things.

I guess that sometimes to others it might sound as though illness is just lose after lose, things that were and can’t be again. Well in some respects it is, but as long as you can hold on to firstly your memories and secondly a love of life and the love others give you, well it really isn’t that hard. I guess I find that bit easier not being of the “I want one” generation. I have never been caught up in that illusion that life and love is measure by how big or how much something costs, designer labels and glitz are nothing but ways of spending the money most don’t have. I have always thought if someone wants me to wonder around advertising their company as their logo is embellished on everything I have, well they should be paying me to do so. Others looking into my world would not be able to see what it is that keeps me happy, as you can’t see love, you can’t measure contentment or pride, as there is no monetary equation for the things that make life truly a wonderful thing to have. Trust me wearing the latest label would probably be more of a hindrance than advantage when you are heading to the loo hoping your bladder will hold until you are there. I can’t explain it but I know without the slightest doubt that the longer I am ill and the less I am able to do to, the more I believe I have found the real purpose of my life and believe me it has nothing to do with the outside world at all. I couldn’t have ever pictured that I would be living as I do, yet still be able to say that I feel more alive than I ever have.

There is something about knowing where that final line is, that actually gives you a great freedom, it is as thought someone has given me the permission to think, feel and be who I really am. There is no longer any need to be anything else, no more faces to wear as it is no longer matters, others can think of me as they choose, I have been give that permission to do what I want, because my life is heading towards it’s end. 2 years ago I thought that being housebound had taught me so much about life and how to live it, I was only half way there, mind you I might be saying the same in 2 years time again, but right now I know without a doubt that the events of 2013 has woken me up. I just wish I had learned how to live a long time ago as I would have done many things in a very different way. Not regrets, just a case of eyes open a little too late. So here it is, Christmas 2013, no tree, no presents, no huge family meal, but I couldn’t be more content and happy about life if I tried, so here’s to the future.

Switching off pain

Last night I went to bed with what felt like several spears stuck in my left side and feeling so sick I thought I would be out of bed any minute, yes I went for the I’m going to enjoy today and stuff how it makes me feel. There is as I said always a price to pay and it was around dinner time last night that I started paying, finding a comfy place to sit or a position that would let me rest was a loose, loose game. Christmas is a once a year day and I play the balance game on the other 364 days, so one day off might upset me for a while but I was going for it. I enjoyed my bucks fizz and the one bottle of Cava lasted the whole day so I didn’t really drink that much on the scale of a British Christmas, spread of 14 hours I landed up actually feeling totally sober all day. Adam took on the role of cooking dinner and he did a good job, I normally in years past would have cooked it and I wouldn’t have bought any of it frozen, this year I did and both of us were a little disappointed with a couple of the results, we know for the future not to spend money on some of it at least, we all live and learn.

There is something about Christmas TV that demands that you watch it that day, recording it for the next day just isn’t the same and just isn’t done, I had to stay up to 10pm to see all I wanted to, so that is two days in a row of pushing myself past where my body said I should sleep. I can’t be totally sure if it was the lack of sleep or the over indulgence of food that has done the damage but I don’t feel great at all this morning. Everything aches and everything keeps twitching and locking then letting go again, but I can live with it for one day, well I hope it is just one day, I will have to wait and see. I have been trying to think back to the last couple of Christmases for the past few days, I wanted to know how I was and what I did and what the price was, but I can remember nothing. I find it one of those strange things that I remember what happened on Christmases years ago but I remember little of the resent years at all, I have tried hard but there is just nothing there. I have heard others with memory problems saying that this is what happens, the long gone past is Chrystal clear, the resent past is a muddy mess without enough definition to know when it really belongs. I could never understand how loosing your memory was something that you just accepted and how it wasn’t a terrifying experience, yet here I am with huge empty gaps that I know should have something in them and I don’t care. So much of my life is a suck it and see situation because of that, I know that I have been through the same thing before but I have no idea what happened then, so how can I gauge what will happen now, somethings have to learned and learned and learned again, with no guarantee it has been learned at all.

We have no plans for today and as Adam is quietly snoring I guess his plan is set out to have a normal day off work, just sleep as much as he can. It used to puzzle me how he slept so long as before my MS took over completely I never slept more than 5 or 6hrs a night, now I’m happy to manage that without a nap. I have this strange vision of the future where I sleep nearly all the time, just waking for the things I need to and then sleeping until the next spasm or meal time comes round. My world seems to turn itself a little more backwards every time I look at it, as though all that I was is being stood on it’s head and shook until it becomes the opposite of what it was original. I am not sure how I really do sleep so much and if I am honest if I do sleep all of it. At night I know that I have found some system that allows me to keep the pain at bay to a certain extent, the meds I am on I know are the starting point as they knock me out, but once asleep I have found that I slip over on to my back and I then don’t move. I can say that with certainty as on occasions Adam has piled his clean cloths on his side of the bed to put away, then forgot, I get into my side, sleep and wake again and everything is exactly where it was when I got in there. None of the bed is ever messed up or even untucked and that says one thing and one thing only, I don’t move about at all. Even my hair is unmessed and if it has been straightened it is still straight. On top of that I always wake with my arms, legs and back all stiff and painful, they take time to free up well enough to turn the alarm off. It is usual for me to have at least one leg and one arm totally dead with no feeling at all, as if the circulation has totally failed. How ever I have been lying I have clearly been there a very long time and my fixed position is the only thing that makes sense as to why the pain doesn’t wake me up. Exhaustion, meds and immobility have a lot of good points going for them believe me.

More Christmas

Last night Adams family came round for a couple of hours to swap their presents and ignore my wish for no presents. I know people find it a strangely hard thing to do, but it made me fell terrible as we just can’t afford to give anyone anything. So there are now presents sitting on the dinning table waiting to be opened when ever Adam gets out of bed. He briefly said good morning and rapidly went back to sleep, I cooked and had my breakfast as we always have a cooked breakfast on Christmas day and Adams is sitting in the fridge waiting for him, when he rises from his sleep to cook for himself. It is normal on Christmas day for me to drag him out of his bed so that we can open our presents together but without all the prep I would usually have put into today I don’t mind if he sleeps. I will sleep the afternoon out and then between us we will cook dinner as the planned check the times of all the bit’s never happened and as Adam doesn’t actually know what is there to be eaten today it will have to be a joint effort.

Since mid afternoon yesterday I have had a stitch, just like the ones I used to get as a child when I had been running too long, but unlike those, this one hasn’t given in and hasn’t gone completely at all. It eases off for a while and then returns, just as it was before when I move at all. I would be be fair to say that it starts slightly higher on my side than a normal stitch but other than that it’s a spasm that wont let go. This morning it has eased a little but has what I would describe as a threatening feeling, pain or not I am enjoying my usual Christmas treat, the thing that says this is not any other day as I am drinking Bucks Fizz. Alcohol in the morning can only mean it is Christmas or New Year. To call it Bucks Fizz is wrong as Champagne it’s not, just cheap Calva in it’s place, drinking on my own is normal as if I didn’t I would never taste alcohol ever as Adam stopped drinking years ago, drink was an all or nothing substance in his life and he chose nothing.

If you don’t have a large family around you Christmas is a strange time of year, apart from the tiny changes this could be any day of the year. Even the TV somehow has managed to be non Christmas this morning. Normally there are loads of feel good shows on, but if they are there I can’t find them. So I am quietly put my time to use on line as always, and hope you all are having a great day.