Tag Archives: change

Moving on

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Change isn’t always the easiest thing to accept, especially when that change means your entire world has been ripped away from you. You would think that by this point in my life, having been so ill, for so long, and having lived what to many appears to be a more than bizarre life, that change would now be easy. It’s not. Oh, I know, that I seem to have dealt with it all in my stride, but appearances are often deceptive and in my case, I’d say that it’s a wonderful deception. Not that I am trying to deceive anyone, it’s just the way that it’s happened. At first, like everyone else, I put on a face, I thought I was doing it to put other people at ease with what was happening and so that I could just get on with life. I had a job, a responsible job and if my staff thought that I was crumbling in my office, well life was going to be hard. I had brought that all into a meeting just days after I was diagnosed and told them what was wrong with me. I thought it important to do so, as I didn’t want gossip flying around, or the possible thought that I was drunk in the office when I wove my way up the call center. I suspect that bravado is what gets all of us through those first weeks and months, but, there is one person that doesn’t work on, ourselves.

I wish that I could sit here and type out a piece on how to get through that time, the things to do, the things to say and just as importantly, the things not to. I can’t. That is an incredibly personal process, not something that is universal in any way. What I can tell you is, it is without a doubt the biggest mental shift that you will ever have to make. A short while before, regardless of how you felt healthwise, mentally you saw yourself still a fit person. You still saw your life trailing out into the distant future and it held all the dreams that the average person has. Depending on your age, those things vary, but for most whatever our dreams are, they are the dreams of a physically and mentally able-bodied person. The idea of climbing Everest might not have been in your head, but if you decided to, you could. You could do anything and everything that life put in front of you, there was nothing to stop you. Then that diagnosis arrives and life stops. Stamped right there in the middle of your forehead is the word, “disabled”. It doesn’t matter what you suspected, or thought might be wrong, you walked into your doctor’s office able-bodied and left “disabled”. This is without a doubt the biggest change that anyone alive has ever had to deal with, short of becoming paraplegic and you have to make it.

Bang, it feels as though everything you dreamed of, has been wrenched out of your grasp and has been replaced by that stamp on your forehead. Not only have your dreams been snatched away, but so has any chance of a normal life. Work, family, home, nothing is ever going to be the same. So how do you deal with it? How do you put things back together? How do you do anything ever again? It isn’t just about change, as change means replacing one thing with another. At that point, there isn’t anything to replace it with, you’ve lost everything and how do you possibly replace all of that. Personally, I would recommend not even trying. No, that isn’t the same as giving up, it just means that you stop and you get used to the facts, you allow yourself time to absorb the truth of what has happened and you grieve. That’s where bravado comes in, that face to the world, the you it knows, is what I believe gets us through. I see no problem what so ever with putting on an act, as long as you have one person, the special someone who you are free to be the new you in front of until you’re happy to show the world who you now are. If you really don’t have a close enough friend to confide in, then behind closed doors, you must cry, you must scream and you must let all the pain caused out. Don’t ever let it grow into an uncontrollable monster, as that is the fast-track to depression.

Even now, change can be hard. Even though the changes are smaller and often progressive, every change has to be recognised and accepted before you can move on. If you fight change, well it becomes like one of those multiple car crashes, where car piles into car into car, but in this case, you are in every single one of those cars. It doesn’t matter how big or how small the change is, you have to deal with it and accept it before, the next car comes along. Just like that first huge change, there is generally no hurry, taking at your pace, means a better and smoother transition. I know that many will think it is something you get used to, that you don’t even really react or notice much, but you do, you notice even the tiniest. It’s your body, your life and there are no two things that are more important than those. For example, I know that discovering that your pinky finger has gone permanently numb, doesn’t sound like much, but I can tell you that by the end of the first day, you will have discovered maybe twenty actions or things that you never knew it was involved in, but it was. Every one of those things will require adaptation, thought, time and surprisingly a lot of emotions, other than just frustration. It will cause extra fatigue, exhaustion, and stress, things we really don’t need. The knock on effects can, in fact, be enough to send your health on a downward spiral, so you have to take time, give yourself the space you need to rebuild a new way of living, yet again. Nothing is ever “just change”, it will have and does have an enormous impact.

Chronic illness is never just one symptom, it is a myriad of pain, emotion, disability and mental impact. Change is going to be part of your life, like it or not and the sooner you open yourself to that fact, the easier your life will be. As I said, there is no magic bullet, but once you have successfully gone through the process that works for you once, it does get easier. The fact that our lives are unpredictable at the best, well oddly, it’s good to know one thing is a fact, even if that fact, turns out to be change.

 

Please read my blog from 2 years ago today – 17/04/2014 – Who do you trust?

Sometimes once I have sent out the notifications of a new post being available here, I sit and watch the globe at the top of my page and I wonder what it is that has drawn readers from all over the world to come to my page and read the ramblings of a middle-aged woman in Glasgow. I am always amazed to see the flags of countries I have never heard off, just as I am on Twitter when I can’t even make sense of the profiles, but here are people who’s first language is clearly not English, still finding something in what I say so compelling that they are happy to spend times reading and translating my word and in the case of Twitter retweeting it, often translating it for those in their friends circle. I sit there watching flags appear and disappear, different……

Accepting it’s time

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As always, when I have to force my brain to talk on a serious subject, it started by sending tears streaming down my cheeks before a single word has left my lips. We had to talk, so those first words had to leave. “Do you think, we’ve reached the point, where we need to have outside help?”

Over the last few weeks, there has been a series of silly little things, that were leading me to believe, that Adam was struggling a little, with looking after me, doing all the chores and living his own life. There wasn’t anything major, but small things. So far this week, it includes forgetting on Monday to phone the doctor and sort out my repeat prescriptions. When he did, it was followed by my doctor phoning me, to question what had been ordered? Two months ago, he ordered the drugs but didn’t phone the chemist, to ask them to pick up and fill the prescriptions. Then there are other silly things, like only leaving me three bottles of juice instead of four, which meant I was pushed out of routine and didn’t take my afternoon meds, nor ate my psyllium pancakes. Forgetting to tell me to have a shower, as I totally forget to if he doesn’t tell me it’s time. I just went 10 days without one, the other week it was 8, I could carry on listing, but none of them alone says anything of importance, it the combined effect. It was beginning to feel as though almost every day, there was something small, but it all adds up and causes me unnecessary stress, something we both know I don’t need. So there I was sat in the kitchen, with tears once more flowing and facing with what for me, has been my biggest dread, outside carers.

He was totally at a loss when I first said it, other than he thought that I might be saying that I was in need of more help having my shower, which other than getting dry, I don’t. When I explained all the different things from the recent past that I could remember, he began to understand, but totally didn’t agree with me. When I told him about the doctor’s phone call, he was at a loss and took out the list he had read from, he was right, if he had done so, there was no reason for the call. Somehow, the Duloxetine that I was on for a few days, but hadn’t settled to and came off, had been reordered. Adam couldn’t even remember the name of the drug, there was no way he ordered it. We came to the conclusion, that the receptionist, out of trying to be helpful, added it after he had ended the call, in the belief he had forgotten it. As for all the other things, well I agree, I was probably blowing them up, something I totally admit my brain does when anything isn’t exactly as it should be. I know that part of my original question wasn’t just about Adam making human mistakes, but because I hate being angry at him, being angry at an outsider, once they had gone, might be a better option.

I know it should be the perfect answer having your partner, the person who knows you best, taking care of you, but it isn’t always that way. I know already from what Adam has said, that he isn’t put off at all, with the idea that I will need growing care. He is perfectly at ease in dealing with washing me, dressing and feeding me, even when needed cleaning up if I’m incontinent, but I’m not. I have been perfectly open, both here and when we talk, that I am finding everything about daily life, more and more difficult. Right now on top of that, I have a collection of stressful events hanging over me, and his mistakes, are just making things harder.

The odd thing is, I think we may have found an answer and it’s not what you’d expect. Rather than taking all these things away from him, we are going to try giving him more, or, as Adam put it, to let him “organise me”. Starting with showers, he isn’t going to shower me, I will still do that, but he is going to help me get dry. For about two months now, I have relied on air drying, not the best in winter but towel drying is now too difficult and not very successful. With him having a role, he has to be here and therefore, by being part of it, he won’t forget. I have also given him permission, to put me right, if I forget to do something due to my routine being out. He is now allowed to correct it himself, rather than my getting angry and storming off to correct it, when he points out that I’ve once again forgotten. I am going to also let him do more for me, so he is part of even the small things like fetching and making meals for me. Anything that I already know he wants to do for me, but I have stopped him from doing to date, I am going to try letting him “organise”.

I have no idea if this is going to work, but we can but try. If it does, well it means the constant feeling of struggling that I have, should be reduced. Mistakes should be less, or fixed more quickly and without stressful impact on me and Adam. Hopefully, this will make Adam happier because he will feel as though he is doing real, physical things to help me. If it doesn’t work, well it will highlight where outside help is truly needed.

I hadn’t truly realised just how pushed out, my wild independence streak was making Adam feel. In a way, I was making him feel useless, despite having learnt to trust him with the care of our home, the fact I wasn’t letting him directly care for me, was hurting him. He has said before that it is painful watching me struggle, when he is sat there with two perfectly good hands and legs, I push through the pain, when he could help, but I won’t let him. If the tables were turned, I doubt that I could have shown his patience, despite the verbal abuse I might have received, I wouldn’t have listened. I guess, it’s kind of stupid us both being in pain when both of us could be relieved of it. I used to be really good at putting myself in the shoes of others, I guess, I have just been forgetting to do so. Not because I have become hard hearted, but because I thought my independence mattered more, thanks to the position I was in. That along with the fact, that I didn’t want him to resent my constantly asking for help. Getting the  balance right, is really hard. Mind you, what in life is easy, when it comes to relationships for couples like us.

How do I feel about this? I honestly don’t know. Last night, I had mixed feeling, partly because I felt as though my health is finally winning, but it was doing that already, whoever took on my care. I still feel that it is wrong, after all, Adam is my husband, not my nurse or my maid, but I do understand his need to do things the he believes, will help me. I know, that I do need more help, I am not managing to keep up just with the little I do, simply because everything, and I do mean, everything, is taking longer and taking far more out of me. There are times when just getting around in my wheelchair is both painful and slow, but pride stops me asking for help, which is stupid, so I will ask. To date, if he sees I am struggling, he has done nothing because he knows, he will only be snapped back at with, “Leave me, I’m fine”. So now, he has permission to tell me he is going to push me, he is going to take over and “organise me”. Given time, I might get used to it, one way, or another, I guess that I have to.

 

Please read my blog from 2 years ago today – 12/02/2014 – Just one moment

I slept well last night, I woke with this feeling of lying in luxury, it was a moment that was destroyed as I had no choice but to move. Lying back down slipping back into the exact position I had been in before the……

 

 

 

 

 

Transition

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I seem to be finding a growing peace in just sitting doing nothing. Which is undoubtedly, not very me. I know it has a lot to do with just how tired I am, but, to find pleasure in sitting in the middle of the living room in my wheelchair, rather than here, or on the settee, really isn’t me. After all, there is one thing that goes, without saying, it’s messy. It’s bad enough, that my wheelchair now sits tucked in edges of the room, all day long, but, for it to sit in the middle, with me in it, is a million times worse. I had just had lunch, and instead of tidying up, tucking my chair in it’s afternoon spot, I just sat there, being messy. It doesn’t actually matter where I am these days, I find myself more and more not rushing to do the next thing, I just sit for a while, doing nothing. Space has become a place I find myself contemplating a lot. Not the one filled with stars, just the one in front of me, directly in front, not even as far as the next object, just the space in between. I can’t even blame a lack of concentration, or my mind flitting off somewhere else, as I know exactly where I am, I’m just not moving, and the oddest thing of all, it really feels good. I wish I could explain it, beyond saying, it just feels right, or it feels good, but I can’t. I just seem to have developed a desire to do nothing, and whenever it happens, I always feel tired and it always feels so right.

If Adam had been at a home, there would have been no sitting doing nothing, I would have scurried around as always, rushing to tidy up and to get life on the move. Not that he would have been pushing me to, that’s totally not him, but I pushed myself when he’s here, why, I don’t know. I suppose, it’s like a lot of other things, you don’t want to appear any less than the person they met and married, despite the fact you clearly are. But Adam wasn’t here yesterday afternoon, he was at his families annual Christmas get together. So there I was, on my own on a Saturday and free to just let my mind and body do what it wanted, absolutely nothing. I had completed all my morning routine, and I had already planned my afternoon, something that wouldn’t start until I moved and tidied up after lunch. It is those transition points in my day, that I seem to find myself extending, pulling out every second so it expands over more than two. I know I can’t stretch time, but that’s how it feels, as though I am making time for me, to be anything but me. As if, by just doing nothing, I am resting, grasping those moments of wakeful sleep, that I can’t find anywhere else. My body has been running on empty for far too long. I have tried everything, from eating more, which has just made things worse, to making sure that when I am doing nothing, that it really is nothing. No fidgeting, no moving things because their not in their ideal spot, doing nothing had to be a total stop. Nothing has worked, I’m still tired. But yesterday, wasn’t going to be the start of my new life, it couldn’t be as last night was the final of “Strickly come dancing” and it didn’t finish until 10 pm, an hour past bedtime. There was no way, I was going to miss it.

No, I wasn’t making an excuse to ignore what I know is the right thing to do, I have sat through every beautiful minute of that show, and I wasn’t missing the finale. My new life pattern started this morning, but before that, I had to stretch my ability to stay awake. I had to find reset and I had to find energy, something at lunchtime, I clearly didn’t have. With Adam gone and the house eventually tidy and silent, I went to bed, with an alarm set for 2 and a half hours, doubling my normal afternoon nap. To my shock it worked, I actually slept, not even fitfully, or in a half dream, I fell into a deep sleep. Clearly, for once, my body was willing to play my game and not its own. For the first time since, to be honest, I don’t know when, I was sat here wide awake right through to the final seconds of the show, and it was so worth it. If I could sleep like that every day during the day, I wouldn’t have half the problems I have had for the past year, but it normally doesn’t work, and I’m not going to be tricked into thinking I can make it do so. In reality, I wasn’t going to get an extra hours sleep last night, but I was still setting the alarm for 8:30.

So here I am, at the start of a new life pattern and already beating myself up, for not being on time. I knew this would happen, but even knowing that, hasn’t made a single second of it any easier. I have been watching that clock out of the corner of my eye, all morning. Every time I have stopped and found that space, I have chastised myself and flown back into action, trying to make up that hour, that I feel I have lost. This is going to be the hardest thing about letting go and doing what is right. I know in time, I will get used to it, that I won’t be looking at the time, or the charter count, I will be once again relaxed and at ease with life, but that’s not going to happen today. Today is going to be super hard, and my body is going to make it even harder. My bowels have decided that running me back and forward to the loo is a good game, my bladder thinks so too. My dexterity is shot, and I am hitting all the wrong keys, meaning I need to correct almost every word and my legs, well they have just vanished in disgust of the whole thing. Who would think shifting your day by one hour, could be so hard. I keep having to stop, not to stare, but to relax, as my shoulders seem to have an infinity with my ears today. The tension in them is unbelievable, and its triggering pain in places that don’t normally bother me, not to mention the fact that my nicotine intake has doubled. I guess that you can’t take a lifetime of training and undo it in just a few hours. This is going to take time, and it’s going to be hard, but I will hopefully eventually feel better for it.

On of the hardest things to find within chronic illness, is balance. You have to work with your health, but you also have to have a life, getting the balance between the two, doesn’t happen overnight. I have rebalanced so many times, but I have never really tried to change it so dramatically. It is easy to cut chunks of the end of your day, that one I have achieved with ease over and over. I hadn’t had a bedtime of 9 pm since I was a child, but cutting back to it, was fine. Yes, I lost time with Adam, but it was equally the end of the day, that suited both of us best. Now, I think nothing of it at all, unless the TV, like last night, puts on something that watching a recording of, just isn’t good enough. There is, though, a point, where you can’t cut it back anymore, unless, you really don’t like your partner, and don’t really want to spend any time, with them at all. Cutting an hour out of the start of your day, throws you for the entire day! Yes, I can tell myself, that 11 am is actually equal to 10 am, but try getting your mind to believe it. Go on I dare you because before you know it, you are rushing once more, and your mind has tensed your body into a mess that you can’t untie, without losing more time doing it. Deadlines doesn’t contain the word “dead” in it without a reason. I know, I’m being hard on myself, but that’s me, not the messy, can’t move person, she is someone else and I don’t like her, so I have to make this work.

 

Please read my blog from 2 years ago today – 20/12/2013 – No words

It seems as though the house is getting colder by the hour, it feels as though the wind has been bustling past the windows and through the trees now for several days. It makes itself known whenever…..

Worlds change

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I was talking to my daughter earlier in the week, she was doing one of her check-up on Mum calls, but, it left me with a thought, that made me realise just how cut off, I am, from the world. To be honest, realising that was actually quite a shocker for me. I am one of the few who actually watches the news channels. No, I don’t mean for half an hour twice a day to see what is happening, I watch it. The News has always been important to me, but when I became housebound, it became an important part of my day. The first two hours of every day, is nothing but News, an hour plus around lunch time, and another hour of so around tea time. If something major has happened, well it’s not unknown for me, to stay fixed to the News channel for most of the day. There is something about not being out there, that has made the outside world and what is happening in it, essential viewing. I don’t suppose that that is too surprising really, but even politics has ceased to be a turn-off. The one thing that hasn’t changed, is I hate with a passion, the so-called local news, note, I don’t even give it a capital letter, it doesn’t deserve one. But, I digress. My need to be up to date, to know the latest state of the world, has become one of my driving forces. This week, with the terrible terrorist attacks in both France and Mali, and the Russian airplane being brought down by an explosion last month, has more than doubled my viewing. Teressa said something to me that made me realise something, I’m not connected to the world at all.

She has been talking for a while now about the possibility of a new job, which at the moment although having been offered it, she hasn’t totally decided whether or not to take it. John and she, have lived in London ever since they arrived in the UK two years ago. This job would mean them leaving the capitol and moving to a part of the country where they would be able to fulfil a dream of theirs, to buy a home. As we spoke, she out of nowhere added a new reason to move, neither of them, feels safe in London any longer. A few years ago, I would have thought of that, less than ten minutes after the news of Paris had settled into my brain. It never entered my head. I came off the phone, feeling cold at my detached state. How had I become someone who thought no further than the place I am sat? That in reality, though, is just how it feels. Despite all my efforts, to know the world, and what is happening in it, I have not been seeing the bigger pictures. Don’t get me wrong, I have a huge amount of empathy, for all who have been injured or lost their lives, and I fully appreciate, the severity, and the snowball effect, of what is currently happening, but I am still isolated from it all. It is as though the walls that have been surrounding me for the last 8 years, have slowly been getting thicker and thicker. Teressa’s reminder that she, her husband, people I know and love, still face the dangers of life, even though I no longer do.

I don’t know when the walls started to get thicker, how my feeling of isolation, somehow meant, that everyone else was also in glorious isolation too. I have lived for so long inside my cocoon, that I had forgotten what it means to actually be outside it. We all measure the lives of others, using our own as our baseline. My baseline is so far from the norm, that my measurement of the world has become warped by it. I had forgotten what it feels like to walk down a road, one moment in the warmth of the sunshine, the next, inside a shadow so dense that it has turned the world cold, as my life, is now spent always in the sunshine. I have nothing to worry about outside of me. I am under no threat, from anything other than my own body, there are no shadows. I have no job to lose, no children to pacify, no meals to cook or shopping to do and no bills to pay that aren’t covered. I have no need to look over my shoulder, to question the footsteps behind me, no friends to disappoint and no enemies to plicate, none of the realities of life, touch me any longer. I don’t quite live in a gilded tower, more a gilded cage, where someone managed to slip the cover over when I wasn’t looking. Is it any wonder that no matter how much I have tried to stay in touch, that all I have actually done, is to constantly learn the events, but not their true and ultimate impact. Yes, the facts of life are important, but so are the emotions, there is a clear danger that I had missed. When you live looking outwards, but only feel inwards, the balance is gone.

Semi-isolation, is not, a normal state for a human to live in. I am sure that I would be one of those people that trainee psychologists would love to do a case study on. I can just hear them squealing in joy, as they sat down and started to draw up a framework of questions and area’s to explore. What impact do 8 years or seeing few others than just one person do to someone? How psychologically balanced can someone remain without the normal interactions and pressures of life? I can hear them because I, and Adam, have heard the other side. The total disbelief that I can possibly be happy, content and not drowning in depression. Clearly, there has to be an impact, things that I haven’t noted, felt or seen, there must be, it’s only logical. The more time that you spend by yourself, the more you do look inwards. It isn’t meant with any malice, but it can be hard at times to hold onto, that those faces on the TV screen are real people. People with lives, people with feeling, people just like I once was, part of a bigger more vibrant world. At times, they even slip for two-dimensional all the way down to one. I have no line of reference to them, now way of connecting, as not only does the outside world often look alien now, it also sounds and feels it. It’s hard when your part of it, to understand what I just said, but it’s a little like having been in a coma for 8 years, one where some information filtered through, but still the world went on without me. Fashions change, people came and went, even some building managed that one as well. Words have snuck into the language that once didn’t exist, the entire make up of this planet, has changed in that time, and all I have had to keep up with it, is my husband, my TV and my PC. A vast quantity of available knowledge, but always controlled by what I knew, when I was last out there. How I react to that world, has clearly been changed by it as well.

Analysing my own life, is sometimes hard when you look at yourself with anything other than a mirror, well what you see isn’t always as pretty as you would like. Mind you, that sometimes happens with a mirror as well. We all change over time, but those changes are influenced by what surrounds us. I’m changing, but my surroundings, circumstances and company are identical, not changed in any way in all that time. As time goes on, I am sure I will miss as many of those changes as I discover. The good thing about the ones you don’t like, you can always change them back, which my unchanging world actually should make it easier for me, than it is for others.

 

Please read my blog from 2 years ago today – 21/11/2013 – The purpose of accountability 

It has been a strange sort of week, TV isn’t helping by being filled with little else than one of my favourite TV programs ever, “Dr Who”. I always thought that it was one of those shows that you grow up with…..

Emotional Fear

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You would think that after living together in the same house for over a decade, that my husband would be able to see the differences between items that decorate our home and be able to put the right one in the right place. Believe that and you will believe anything, in his defense I have actually come to the conclusion that it isn’t his fault, it just because he is male. Last night when I sat down on the settee, I noticed straight away that there was something wrong with the items in front of me on the coffee table, it was nothing major but it was yet another example of his complete lack of noticing details. I have built up a set of 8 crystal ashtrays, 4 in the living room, one in the bathroom and another 3 in the kitchen. Being crystal although they have the same pattern the thickness varies, something that is totally normal, but the 4 thickest are the living room ones, the next thickest is in the bathroom one and then the kitchen, in front of me was the one I know belonged on the kitchen worktop near the window. I said nothing but laughed inside, another tweak to make in the morning to put things right.

I know most people wouldn’t notice it or think that it mattered but where things are and the way they are placed is something that is important to me, not because I am being picky or obsessive as some might think, but because it is another of my MS monsters. For a long time I really thought I was just obsessive but once I had it explained to me it made sense. Some of the damage that has been done to my brain means that I have to have everything right, nothing can be out of the ordinary I can get really upset and agitated by it. Change is something that throws me totally and I have had many occasions where I have walked through a room and had to stop, look around me and find what is wrong, as I will have noticed it but not registered it. I have to stay there until I find it and it is corrected, as otherwise I will be back a dozen times with the need to correct it, what ever it is. It is hard to explain the fear and agitation that it causes as it sounds totally ridicules to anyone else, but brain damage is a ridicules thing to live with. At it’s worst I can be in tears and shaking, totally tense and unable to think how to sort it, I feel out of control of my surroundings and there fore out of control of myself. Last night I was able to laugh but this morning as soon as Adam was in the shower, I fixed it.

I have mentioned this before as there are a couple of extreme situations in the past, but the reaction from others has always been along the lines of don’t be so silly, and pull yourself together, even from some who are totally aware of my illness. It is clearly something that others find hard to understand and impossible to conceive that anyone adult should react in such a illogical manner. Being a logical person, I even find it hard to understand which actually makes it worse as I have the battle of both sides going on in my head. Fear, because that is what it is, is in itself an illogical thing, unless you are hanging of a cliff, holding only onto a string, life rarely has anything in it we really need to fear. When you body reacts as though that is your position, simply because someone has put the wrong ashtray on the table is nuts!

Adam knows all this and I know that he try’s his hardest to keep everything where it should be, to the extent that he photographed all our ornament so he can return them to their spot once dusted, but mistakes happen. Last night possibly because I was too tired to react in my normal way, was an odd exception, I managed to leave it as it was until this morning. Living with it for him and myself is difficult, and part of my condition few would expect or think about. In it’s own way it is as major a symptom as the pain or lack of mobility. On the recent trips out to the hospital I found that I had to shut my eyes while I was in the ambulance, as I couldn’t cope with the outside world, it had changed or my memory of it had, not seeing was preferable. My world has to be totally ordered, unchanged, calm and in routine, anything less cause me distress which in turn heightens all my other symptoms. Of all the things that MS have done to me this has always been the hardest to talk about. I can tell you anything about my bowels or my bladder, admit that I can’t control either, but to admit I can’t cope with one small change in my life because my brain goes nuts, is hard. Admitting that anything is wrong with our minds, seems to be such a major stigma in this world and it really shouldn’t be, after all our brains are just another pile of cells, just as our livers and hearts are, but those brain cells held within our skulls seem to be taboo. Well I have said it, my brain cells have taken on a life of there own and I have no control of it, they are like much of me defective.