Somewhere inside

Posted on March 18, 2016 by livinginalimitedword

To an outsider, my life must look so dull. To me, no two days are ever the same. I never realised the depth and variation of sensations, that there are, that one human body could produce, nor the intensity of feelings or the emotional kaleidoscope, that could produce. I guess that we are all mistaken in making one assumption, we are all the same. It’s an assumption, that I made like most when I was still a child. I looked at the world and saw that we all have one head, two arms and two legs, therefore, we are all the same. I had that mistake reinforced when I was constantly told my doctors in my twenties, that there was nothing wrong with me. All the pain, the fatigue and everything else I felt, apparently, didn’t exist, or everyone out there was going through exactly the same, and I was just a wimp. I accepted the second, as fact. I was a wimp and I was just going to have to get on with it, as everyone else did. In some ways, I am now glad that I took that option, as it taught me how to live with what I now know is an amazingly difficult condition, to live with.

I can honestly say, that no two days are the same. Every hour of my life is different from the one before. If I were to look at it on the basic level, yes, I could just say that I am in pain and discomfort, but even that changes all the time. The combinations, the exact locations and how they feel never stands still. I might be motionless, but my body never is. I have tried so many times to explain what it is like, to live within my body, but it doesn’t matter which post you pick, which day, month or year, not once have I been totally happy with my description. I can’t write in the detail required, in a way that would compel anyone to continue to read. By the time, I had pieced together, a fair and detailed description of one part of me, it would have changed and my words would be wrong. I know, because I have tried and the result, is that I delete it and I try again. If I get close enough to being happy and I publish it, I know by the time it is read, all of it will be history. Capturing my life is like taking a still photo of a tornado, it tells you little other than that second in an ever changing process. That’s why I’m happy I learned to live within it, when it was still forming, and long before it became so destructive.

From time to time, someone starts to read who understands how my life is. They recognise some of my posts and connect to events and the feelings that they bring. Those moments of connection, of understanding, mean the world to me. I know and I have said it a million times, our conditions don’t matter, If we share symptoms, lifestyles and emotions, that is what matters, that is enough to say that we are one. But, there are times when I feel so totally alone, like I no longer have a head, two arms and two legs, because, I can’t find the connection of anyone who understands it all. The world out there hasn’t changed, the world out there still looks the same, so it has to be me, it has to be me as I don’t seem to fit any of the moulds any longer.

I have yet to find one other who has PRMS, who I have found that connection with. I have met I think maybe two or three on twitter, but they weren’t the type of people who wanted to share. That’s OK, we all have a choice as how we want to live and finding someone else as open as me, won’t be easy. I know PRMS is rare, but I never thought that it would be such a lonely world to live in. As I have just said, without a doubt, there are people out there who get it, so maybe, it’s just me. Just me, is lonely. Not lonely in a conventional way, it’s not about company it’s about total understanding, connecting, finding a mirror to look in and seeing a reflection I understand. When your body is in turmoil, when every second is different from the one before, well the odds of finding someone in total alinement, says it isn’t going to happen. Even if it were just a shadow world, I’d like to, at least, say hello, long enough to high five in recognition.

I know I’m not the wimp that I once thought I was, I’m a long way from that. I know that I am probably the luckiest person in the world, to have found someone who loves me, who supports me and cares for me. I know that I have a huge community out there of people who read my daily ramblings, who care enough to keep in touch and say hi, from time to time. Yet, as I said, sometimes, it just feels as though I’m alone, which is probably the craziest thing I have ever written, but right now when the pain has jumped off the scale several times as I have been writing this, when I feel as though I have an alien child inside me, ripping my insides apart and spasms flying up and down my legs. I feel alone. Maybe, we all feel like this. Maybe, I’m more average, more “normal” than I think. Maybe, it’s just one of those days.

Please read my blog from 2 years ago today – 18/03/2014 – One simple fact

I find myself in an unusual position today, my right thigh, yes I did say right, is in almost constant spasm right down the front of it. The pain isn’t any worse than I often have in my left leg, but just being on the wrong leg makes is 100 times worse for some reason. You wouldn’t believe just how something appearing where it shouldn’t be, can actually really make feel far worse than it should, maybe it will settle down as the day goes on, or maybe I will just start to accept it and get on with everything……

A good day

Posted on December 27, 2015 by livinginalimitedword

I guess that it is going to take a while for me to return to being just me. Christmas is always the same, too much to eat, too much to drink and not enough sleep. All my great plans of getting up an hour later, have been happening, but they have well and truly been undone, by the desire to watch TV programs when aired, rather than the next day. I guess, that no matter how used you grow to the modern world, some pleasures, still have to happen at the right time, or their just not the same. Mind you, the modern world destroyed one program for us. Our sky box decided that it was going to freeze up totally and need rebooting, half way through “Dr. Who”. We still haven’t actually seen the end of it, as there just hasn’t been time, but we will, so no one, please, don’t talk about it. I have had so many programs ruined over the years, by some TV personality, or news anchor, deciding to talk about it, before I’ve seen it. I suppose, though, I have discovered why people don’t make life changing decisions, or changes to their lives until the New Year, there are just too many ways, for the Christmas season, to screw it up. Sleep will be sorted, but probably, only partially, until the first week of January.

On the whole, my body went through Christmas day without doing anything too horrendous, but it’s still working on making up for that today. The price of having a really nice day, as that, was exactly what we had, is a body that needs to recover. When you start from a low, a position in life where it doesn’t take much, other than a minor change, to throw your entire body into hell, well what on earth do you expect Christmas to do to you, other than destroy you. I guess in some ways, that why Adam and my spending a quiet day, just the two of us, is the perfect way to handle it. Yes, there is still a lot of change, that come with all the days trappings, but there is also a thread of normality, that is my anchor. I didn’t get through the day without pain, without spells when spasms were attacking me, but by keeping things low key, I survived. Without a doubt, it wouldn’t work, unless, Adam didn’t just see the need for it, but actually embraced it full heartedly. I remember the first year that we separated ourselves from family, I was so unsure about how it would work because of Adam. He has always been a family boy, in his life, there were four important women, me, his mother, his grandmother and his sister, all of whom he adores. It was when his Gran died, that Christmas was allowed to change, as his sister had her partner & his mother had moved out of Glasgow. If I had been well, I would have insisted on stepping forward and we would have taken on the Christmas gathering, which once happened at his Grans, but I wasn’t up to it at all. Nothing was said before it, we just had our first Christmas as a couple. But I do remember so clearly, how at the end of the day, Adam without prompting said just how nice it had been. Our Christmases were set for the future and we’ve never regretted it.

There isn’t a single aspect of life, especially family life, that chronic illness does affect. Too many people, the work of just setting a proper table, one that speaks for the day; of decorating the house fully to capture the season perfectly; meals that take weeks of planning and days of cooking; then all the shopping; the presents to be bought and wrapped; not to mention the day itself; is too much for many who are fit and healthy, for us, they’re a nightmare. I know without a doubt, there would at one point have been whispers that I, and possibly even Adam, never heard. Words said about how I was destroying things, refusing to take part in things, as it’s just one day, what was the problem? I know they would have been if not said, at least, thought, as until my health destroyed me, I would have thought just the same. It is incredibly hard for people who aren’t ill, or doesn’t directly care for us, to understand, it isn’t one day, it’s weeks. There is whether you’re the host or a guest, a stress to Christmas that is unlike any other time of year, and our personal monsters, just love stress. Although I not once felt as though I had had a drink, I kept myself gently dosed with enough alcohol and morphine, to keep my body relaxed. Probably, not what any Doctor would want to hear, but it worked for me. Just a day, with a meal, a large dose of normality, mixed with entertainment. Followed by who knows how long before my intestines recover and stop throwing spasms, in disgust at being stuffed. For all the aching and painful muscles that complained about the constant visits to the kitchen and back in my chair, how long before they die away? How long before I can wake up, feeling just that little bit more awake than when I went to bed? How long before I settle back to my “normal”? How long will all that and more take, after all, it was just one day? Did I miss those Christmases past? Yes. Do I want them back? No, no and no again!

There is a wonderful comfort found in knowing that although, I can’t make his family understand, or probably anyone else’s, that we still had a really good day. In fact, it was the last thing that Adam said to me before I went to sleep on Christmas night. “That was a good day!”

Please read my blog from 2 years ago today – 27/12/2013 – One more tear and one more to come

It seems that life is set to keep you guessing and to confuse you constantly, I still haven’t the slightest idea what is up with me, all I do know is that I really am not myself. Yesterday the tears didn’t flow…..

It all matters

Posted on December 25, 2015 by livinginalimitedword

Well here it is, another Christmas, another year almost ticked to it’s close. It is normal at this time of year, to look back over the year before, and analyse its highs and lows, something that being so ill you are housebound, is really hard to do, as there really aren’t that many. In many ways, that is a good thing, because it proves just how well my routine has worked for me. I have until the past month, held my health reasonably steady. Yes, I know I had pneumonia in July, but that only lasted two weeks in total. Two weeks out of 48 is amazingly good if you ask me, and no, today is not going to be a day, where I sit here pouring out just how wild my sensations have been in the past 24 hours. All I’m going to say about them is, they’re still getting worse. Today is Christmas day, it’s a day forever changed by my health. All you have to do is read my posts of Christmas past, to see that I still miss badly what I can no longer have, that’s the tough thing about being human, we always want what we can’t have. Our health takes so much away from us, and it is so easy to sit and wallow over all those things that have gone, what’s not so easy, is to celebrate just what we have.

I believe, that for all I have lost, I have also gained. I’ve gained things that I don’t think, I would at this point in my life, have been aware of as intensely as I am. There is one universal thing, that I have heard from every chronically ill person I have ever spoken with, and that is the total understanding, just how important life is. It is probably the saddest truth of all life, that we have to be threatened with losing it, before we realise, just how much we love it. The other evening, Adam showed me some old photo’s he had found, whilst tidying up his dump in the kitchen. I know he thought that I was only half looking, but I was looking, I just didn’t want to. What he showed me, were pictures of me, when we were in Arran. Most were taken when I wasn’t looking, as I hate camera’s with a passion. Especially, when I haven’t done my hair perfectly, or my make up on, something that’s not truly possible, when your camping. One showed me standing almost silhouetted against a darkened sky. As always, I was totally dressed in black, and my hair, at that point oddly it’s natural colour of dark sandy blond. The wind was throwing my hair out behind me, and the whole look was somewhat dramatic, the wild women of the land look. I actually remember standing there, looking out over the dramatic scenery and looking forward to our days hiking through it. I also remember, that despite being surrounded by nature, in a place I totally loved, I just didn’t get it.

I thought I did, I honestly believed that life couldn’t have been better. I was in this amazing place, with someone I was deeply in love with and already knew, I would never be apart from ever again. I had a job I loved, a future that looked nothing but rosy, but I still didn’t get it. I thought that life had taught me all the major lessons that any of us learns. I had seen the worst of people, and the best. From those, who used love as a weapon, to those who use weapons as love. I’d lived in different places, and in every financial level that I could think of. I’d learned the hard way, just how painful life could be, and how wonderful it could feel as well, but I still didn’t really get it. I was missing one thing, I didn’t know that I was, because I didn’t even know existed. I thought, that the death of my son had taught me, how fragile life was and how important it was, but even that didn’t quite get there. Maybe, the fact I was just 19, meant I wasn’t quite mature enough, to take the deeper message and run with it. I know I was at that time, so locked up in pain that was being constantly inflicted upon me, to see it, whatever it was, I missed it.

I have always believed totally, that you can’t manage to live with chronic illness until you have accepted it. I know, that is a belief that is shared by the majority. Fight it, and it will fight you harder than you would believe. I accepted my health nearly 15 years ago now and I thought for a very long time, that that was all that was needed. It probably is, but for me, it was only half the story, I still hadn’t quite taken that final step, the one I now know was missing. I don’t know exactly when it happened, probably, around the time that I was told I had about 10 years to live. Hearing such things, is inclined to make you sit and notice the world again. It also takes you a little time to settle to the fact that that is just the way it is, and you had better make the most of it. Being housebound, has a sort of limiting effect, but maybe, it also had a lot to do with the fact that I embraced my health, not just accepted, but embraced it as I would an old friend. If we were going to live together, we had to get on with each other.

So what was it I missed, well it’s incredibly simple, I didn’t have the total love of life, the understanding of its depth and its importance. I’m not just talking about loving those around you, I got that bit. I totally understood the love of people, even the love of things, but life is neither. It’s about loving and living every breath that you take, even if that breath is painful. Every step, even if it means that step will leave you on the ground unable to stand. Each painful action, being loved as much as every joyful one. It’s about realising the true value and importance of others, even those you’ll never meet. It’s about learning there isn’t a single element of any life, that isn’t important, in make life what it is. In seeing every texture, every ripple and every speck of everything, because it matters. Or in simpler term, that your part of something so amazing and so important, that it doesn’t matter what happens, good or bad, your quite simply, lucky, to be able to know about, any of it. Without a doubt, if I had understood this sooner, my life might have been very different, I might have not just seen those mountains, I might have loved every inch of them more than I did, but I can’t and wouldn’t change a thing.

I might not be having one of those flashy Christmas’s of old, no Christmas tree, no piles of presents, or a table groaning with the weight of food. No noisy families, no flashing lights, or even the candles that once burning in every room, but oddly, I am so much happier without it all. There is no stress, no worry and nothing false in any way, about being able to say, “Happy Christmas”, to each, and every, single, one of you!

Please read my blog from 2 years ago today – 25/12/2013 – A visit with a kick

You would almost think this was the weekend, yes the room is once more filled with the echoing sound of snoring. Yesterday went well, Teressa and John arrived as I thought they would around 4 o’clock…..

Joining the dots

Posted on November 13, 2015 by livinginalimitedword

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

A little understanding

Posted on August 8, 2015 by livinginalimitedword

What is it about humans that we insist on making our lives more complicated than needed. I became of a small error caused by shifting from one site to another, the links in my old posts, of course, don’t work any longer. I had this mad idea that I could correct one page a day, as I work through adding the links to my post from 2 years ago that are at the bottom of every daily post. It is a total nightmare! I can’t find most of them now and it has made a mockery of some of the subjects as they rely on the links to make sense. It won’t matter until January, as the old site is still there just now, but once it closes, none will work any longer. I thought that blogging was supposed to be a relaxing and soothing process. Somewhere that I could de-stress, sort out my head and set off with a smooth start to my day, not a bundle of aggravation. I guess it was one of those not so bright, bright ideas.

Adam has just left for the day. Odd for a Saturday, but it is his mother’s birthday, so Adam and his sister are spending the day with her. I am very fond of both his mother and his sister. They welcomed me into their family without question. Something that I don’t think all families would have done when their 20-year-old son brought home his new girlfriend who was 17 years older than him. I was simply welcomed in and became part of the family almost instantly. When a couple of months later we announced we were getting married, they were delighted. Once my health deteriorated and getting out and about was not quite so easy, I became used to being left out of all family celebrations. It was my choice really as they did at first make a point of coming here once I wasn’t up to trailing all over the place. Unfortunately, his family have never seemed to understand the concept of time. At first it was just them being late on arriving and wanting to stay long past the time I should have been asleep. Then on one occasion, a few years before I was totally housebound, I had invited them for Christmas lunch, they arrived 4 hours late. I declared to Adam that I was never inviting them here again for any meal. I expected Adam to be on their side and I was ready for the excuses, the reasoning as to why I was wrong, there were none. He totally understood and actually felt the same way. He knew exactly how much work and planning had gone into that meal. He knew I had started to cook and prepare everything days before and he too had put in a lot of work towards it. He had seen the struggle that some of it took and how much pain and fatigue I had put up with, just to get things right. Importantly, he knew what it all did to my health. He knew that I was going to be paying for it for days after as well. Yes, it was my choice to put myself through all that, but that was part of my gift to them, on that day. Although his family knows how ill I am, they don’t live with us or see me day to day. They are really nice people and are caring and loving, but that one instance provided a perfect example of the difference between knowing and understanding.

It has taken my many years to accept that most people, no matter how well they are taught about anything, many can’t make that step over into full understanding. It requires empathy and quite simply, empathy can’t be taught. It may be because I have led what can only be described as a dramatic life, that I find empathy for most situations, incredibly easy. There is one huge problem with that, it is draining and it is often painful. I came across the other day someone complaining about a doctor they had just seen as he had been a little cold and lacking in feeling. I realised from the way they had written their post, that they had missed one simple point. If a doctor or a nurse were to feel true empathy for every patient they saw, they would land up in the mental health department as patients. Clearly we all expect a certain level of “bedside manner”, but to expect anything more than that I think is unreasonable. The medical profession does an incredibly hard job, none of which I would want to do. Our doctors are professionals, not our buddies and I can see that that distance has to be maintained these days. Gone are the days that you invited the family doctor to christenings and weddings and sent them Christmas cards and gifts. They have become more like an oil mechanic who you respect for their knowledge but don’t want to hug. It’s almost impossible from that one post I read to work out the sort of person who was actually writing. But there is one factor that comes into our interactions with doctors I think was missed, the way we present ourselves.

I knew someone years ago who felt the only way to get a doctor to do what they thought was needed, was to threaten them with legal action. He took great pleasure in telling them how his father was a top lawyer, in the position to squash them if they didn’t get it right there and then. On one occasion they complained to me about the attitude of the doctor, they had found them slightly aggressive, I wasn’t surprised. Just like family, we expect our doctors to understand. Surely, they, if there is anyone, has to be the one person who knows what we are going through. I disagree. I along with many other women I have met, actually believe that midwives shouldn’t be allowed to practise until they have had a baby themselves. There is something incredibly annoying about having someone standing there telling you it doesn’t hurt or it’s easy, just push a little more or worse don’t push at all, when they themselves haven’t done it.

Everyone who has a chronic illness seems to have one thing in common, we want to be understood. We aren’t looking for people who pity us, we’re not asking to be waited on hand and foot, we just want understanding. We’re looking for almost the impossible to find. The only ones with a chance of understanding us are those who have the same illness or those who live with us 24/7. Even those who share our condition, might not fully understand as there are so many variations, phases and combinations, make that almost impossible as well. We might share symptoms, lifestyle and aids, but that doesn’t mean we understand fully the effect on another individual, as we haven’t led their lives and we’re not them. Understanding isn’t found in books, it doesn’t come from hearing about it, I don’t think it fully comes from even living alongside us. Adam is amazing, I couldn’t ask for a better husband or carer, but even he at times doesn’t fully understand what I am going through. We can’t expect others to just look at us and know how we are. Our attitude at that second of time only shows that second, not our lives. It is yet one more thing we have to deal with, one more change that we have to make to ourselves, but it is up to us to teach all of them as well as we can. It is up to us to empathise with them if we want them to empathise with us.

Please read my blog from 2 years ago – 08/08/2013 – Adding the hours

I woke yesterday evening, yes I said evening. I was woken by Adam when he came home from work at 6pm, I hadn’t set the alarm as I really thought that I wouldn’t sleep very long, wrong! But it put to test my what if, if I slept longer…….