We matter

I read a post yesterday from a young woman who believes at this moment due to her health, that she may never become a mother. I truly felt for her, especially as to me, her post came across as almost apologetic for the way she was feeling about it. What is it in this world that makes so many people feel that feelings, whatever those feelings are, need to be apologised for. Grief is an incredibly real and painful thing to go through, and grief isn’t only attached to death, as I said to her, I know that one, all too well. Luckily, she is moving in the right direction and is not only seeking and getting help and like me, has a wonderfully supportive husband. Many are not so lucky and even more, instead of feeling it, showing it and growing through it, hide it, or worse still, dismiss it.

They used to say that the British had a stiff upper lip reaction to everything, if you believe the books of the past, to an extent that was true. It started with our so-called upper classes, who taught it in a slightly different form, through to the white collar environment, to the middle classes, and they passed it down again, to the rest of us. You would think that over time, it would have vanished by now, but there is one huge dinosaur, who has held onto it with iron fists, the business world. Those who have read for a while will know that I had a varied career over the years, but I still remember the feeling that hit me, the first time, I walked into work as a cog in the business world. That was back in the days when a business suit, was required to sit and sell on the phone. That suit meant you didn’t have feelings, and even more importantly, you didn’t have emotions. The occasional quiet laugh, but no emotions. The higher the ladder you climb, the harder that rule is applied. You can’t have emotions, as then, you might have friendships and then, how do you fire a friend. Business is filled with some of the apparently coldest people I have ever known.

When I was diagnosed with my PRMS, I remember going into my bosses office to tell her what the news was. She listened, she made all the right noises, said some of the right things, then told me to go home for a few days, “until your emotions won’t show to the staff”. That is the biggest problem with the business world, granted, you can’t have people crying all over the place, but you can have people, who are just that, people, not machines. Business can deal with broken bones, but it doesn’t have a clue, how to deal with broken people. I took her advice and I went home for a few days, then I totally shocked her by calling all my staff together to explain, exactly what was wrong with me. I felt, it was the best way to deal with it, the honest way, as unlike her, I could do my job and be a person. Mental welfare is more important than anything else, and until they learn that, they will always, be vulnerable to its side effects. Is it any wonder that working in that sort of environment, for those sort of people, means that people mentally breakdown all the time. What is even worse, is the same attitude, often goes home with everyone at the end of the day. Their boss may not be standing over them, but the pressures of the job never let’s go, and living as two totally different people, will break anyone eventually.

From childhood onwards, I had so many things happen to me, that left their scars. I had a major breakdown in my early 20’s, my brain just couldn’t take any more and it snapped. I was given a choice, voluntarily go into hospital, or be sectioned. I spent six weeks in a recently renamed mental health unit, previously know as an asylum. The name may have changed, but the buildings and the care, was still extremely outdated. Six weeks and another 2 years of learning through therapy, to not let the pressure build, or to put things in boxes, and hope they will stay there. I learned and practised that right up until the day I was sent home to compose myself, then I started stacking up those boxes all over again, because, I needed my job. For the next two years, I forgot how to grieve, I forgot to feel, to cry and to deal with everything as it happens. My health stepped in and gave me a reminder, all that stress brought on a major flare. One that landed me up in the hospital, unable to talk, breath, or eat. The mechanism that allows us to do all those things without thought, went. They were muddled up and confused, just as my mind was. Three weeks in hospital, resting and clinging to an oxygen mask, followed by intravenous steroids and another two weeks of rest at home, let me remember to feel. My boss didn’t like it much, but a new me returned to work, no longer the stuffy business person, respectfully dressed but me, with a different attitude and a defiance to be myself. They didn’t like it, but there was nothing, they could do, they tried, they made it hard for me to carry on working, but they failed.

I know that there are a few companies out there, who have realised that a happy, mentally healthy staff are more productive and have taken positive steps. But only a few. There isn’t a single reason on this planet why anyone needs to wear a suit, unless, they personally want to. Work shouldn’t be about control, it should be about cooperation, just as life should be. I know it’s all very well and good saying that your mental health is more important than any job, but when you really need that job, when without out it, life would flounder, it’s hard to accept. That is one of the beauties of being chronically ill and housebound, I can say these things, but I say them with gravitas as I have been there, and, I can also say them with sincerity, with love and a longing to be heard. Our, mental health, is worth more than anything else, as, without it, you truly have nothing and are locked in places where no one wants to go.

Every emotion we feel, is, there for a reason, so feel them. Even if they cause you unbelievable pain, that pain is short lived, if it is felt when it should be. Yes, you can hold onto it until your in an appropriate place to let it out, but let it out, sooner rather than later. No emotion is time capped either. Grief takes as long as it takes, I still grieve for my son who died over 30 years ago, but usually it’s no longer that raw pain, and it’s no longer there, for every second, of every day, it mellows. Why is it acceptable to act like an idiot, shouting, jumping up and down, smiling from ear to ear because something good has happened, but wrong to sit and quietly shed a tear when a painful memory appeared? It’s wrong and the only people who can change that, is us. Our minds matter, take care of them.

 

Please read my blog from 2 years ago today – 11/02/2014 – The freedom of desolation

I seem to be having some luck with the fluid reduction as my ankles are much improved, as I expected though I have three fingers on which my rings are still stuck fast. I guess they will take a large miracle……

 

 

 

 

So what if I’m nuts

If I didn’t know better, I would now be dialling 999 and praying that they arrived promptly. The right side of my face has just gone numb and feels as though it is hanging there, just as they show when describing a stroke. I know it’s not because it happens all the time. I used to run to the mirror and check, so convincing is the sensation that even if I was in bed, I would get up. Nerves can be very convincing when they decided to put on a show and trust me when I say, feeling as though half your face dead and falling off, is pretty horrific. It’s just one of an array of sensations that I have learned to live with, this one though is somehow the worst one. I suppose there is nothing in this world that is more our identity than our faces are, so this attack, as that is what it is, this attack, is a direct attack on me.

It can be very hard thing to accept that everything that is happening to you is actually being caused by you. Autoimmune conditions have to be the most difficult things to fully accept. Illness until you are diagnosed with an autoimmune condition is caused by some evil little bug or virus. Something that you can blame, give a face to and even a name. It’s not you, it’s this thing that is attacking you. Then suddenly this new word appears in your life, “Autoimmune”. Your body is attacking itself and it can’t be stopped. It doesn’t make any sense, how can your own body be putting itself through all this pain and be slowly destroying itself. You can’t give it a face, as it’s your face. You can’t give it a name, as it’s your name. Even logic says that you can’t hate it, as you are then hating yourself. “You have an autoimmune condition called Fibromyalgia”. That was the first time I heard either of those things applied to me. It’s one of those devastating second in life when the world stops and you sit there with everything echoing in your head. No matter how hard you try to listen to the doctor, all you really remember are those few words, the rest seems somewhat unimportant. The doctor could have diagnosed my MS at the same time, but she didn’t think that a CAT or MRI was needed. Fortunately, an ENT specialist that I saw a few months later thought it was important. It was another year later I found myself being told I had PRMS. It actually didn’t hit me as hard when the words were said, by that point I was ready for it, not the Progressive Relapsing bit, I was expecting the normal RR. It sounds stupid now, but it wasn’t until a few years later that I truly began to understand what my future held for me. It was also about that time that I fully accepted that my body could really be causing all of it.

I related all of that for a reason. Acceptance of your health isn’t a smooth straight forward thing. Being diagnosed is the easy bit, accepting and understanding can take years. I think we go into self-preservation mode. Somehow if we accept it, all of the horrid things that we have read will actually be real. It is something that isn’t just some horrid mistake and one that is going to be spotted during one of their annual catch up. Acceptance is slow, incredibly painful and totally essential. It happens in phases, the first phase is actually a false one, it’s not acceptance at all. I spent a few days at home feeling sorry for myself, just sitting there crying and crying until I couldn’t any more. I thought that I understood what was happening, that I was accepting, but I wasn’t, I was mourning. I was mourning a list of things, including the end of my fight to find out what was wrong. That phase of my life was over and gone, the fact that had gone from just one devastatingly crippling condition that was going to steal my body and my mind, to two and this one was going to take over my life. I thought the last tear was acceptance, but it wasn’t, it was coming to terms with it, realising I had to get on with life and putting the tears behind me. Over the next months, there were more tears, more grieving for what I had lost although none of us really know that, as we can’t know what life would have been, but we mourn it.

Acceptance is an incredibly slow process. It comes when your not looking for it. It grows through all the things that you discover haven’t been stolen from you overnight. It’s in all the new things you still learn and achieve despite this autoimmune monster. It isn’t a flash of lightning, it’s a gentle growing feeling and as it grows as you learn that life goes on, you adjust to your new title. I know the outside world thought I had accepted it long before I had, but that was because I was being me. Bravado was always part of my life. I always went into things full heartedly on the surface, but shaking and terrified inside. My appearance in this situation was no different. I was upfront, happy to tell anyone anything they wanted to know. I hid nothing from anyone and smiled as I spoke, even on days when I was dying inside. I can’t tell you the exact day that the two actually were the same thing. I don’t remember when I truthfully felt what I was saying, that the ‘I can do this with my eyes shut’, met head to head, with ‘I am happy, this is my life and I’m living it’. But they did.

I know many believe wrongly, that acceptance has to happen quickly and it’s the only way to get on with your life. There is no right or wrong time that acceptance will appear, but it does appear and it can’t be forced. Once you do accept, once you truly say this is what life has laid out for me and I am content to live with it, life changes. You can’t fight chronic illness. You can’t defeat it by being positive. Neither work as both are just showcases for the outside world, not healing on the inside. No one is given a diagnosis of something that is going to destroy them one day and next be smiling about it unless they have a screw loose. For me I know it was sometime around the point that I was given chemo to knock out my immune system so my body could heal, that I truly found my acceptance. That was about 4 years after my diagnosis. I found an odd positivity about what was happening to me, I might be dying slowly, but I wasn’t dying yet, I had too much still to do. If I had to do it full of radioactive chemicals and from a wheelchair, so what. It was like those chemicals were my wake up call. They don’t give you stuff like that unless you really need it and if they were going to give me a chance at living longer, I wasn’t going to let them down. My acceptance was complete.

I believe totally that we all find that point, somewhere along the path of illness is that wake-up marker and it doesn’t just happen once. They are there all the way through, there to remind us that life is still ours and we are still have living to do. It doesn’t matter how black and bleak your prognosis, once you have that acceptance, well nothing can hold you down for long. I am doing this to myself, not willingly, but because I was unlucky to have a screwed up autoimmune system. Not fair, but a fact. Even now when I know I am slipping once more, I can accept it. Right now, it’s not with an fully open heart, but with one open enough, because I have the knowledge that I will find it anew as I always have in the last few years. Once found, you never truly loose it, it just hides every now and then. Until it happens, you can’t see it, you can’t believe that it will ever happen to you. I felt the same, I thought people who were positive about their lives when they so clearly were a mess, well they were nuts. I am now and have been for several years, happy to be officially nuts.

Please read my blog from 2 years ago – 29/07/2013 – The start of a thought…..

Yesterday brought me on blessing that I had hoped would be worth the money I spent on it but like many things I had to wait and see when they were eventually arrived, confused? My new glasses arrived, the ones especially for sitting here typing! I had been a little….

Accepting a new future

I had a comment the other day that said that they thought I was missing me, to those who haven’t been through chronic illness that will sound like the maddest statement, but it’s a reality for far too many of us. When first diagnosed, one of the things that you go through is grief, you mourn for all that you have lost and will never have and it is as real as the grief that we feel when someone we love dies, as in so many ways, that is just what we have done. Back in 2013 I wrote a post about the steps of grief that comes with chronic illness and how I handled it in those early years and just how it doesn’t have a shut-off date, it lasts as long as you need it to. All too often though, we don’t recognise our grief or even the fact that we are in need of another spell just spent putting behind us what needs to be packed away, simply so that we can move on again. It is actually one of the pitfalls of blogging as I do, as I often reopen things that some might say that I would be better off leaving behind. That in itself is a huge mistake, if something has reopened a soar, be it at your own hand or simply something you saw on TV or read, it has to be dealt with, it won’t just quietly put itself back in its box and go back to sleep until you put in the work.

Being housebound has a habit of putting everything under a microscope, it doesn’t matter how small and unimportant something might seem to everyone else if you are trapped with nowhere to run, those small irritating things have amazing power to grow and grow and grow. Last week the catalyst was the pain, but what was getting me down was how useless I was feeling as it didn’t matter if it was just picking up a glass, it was pushing the pain levels. I couldn’t do anything about it, I couldn’t go out and do something to take my mind off it, all I could do was sit and make it worse and worse in my mind not just my body. I still can’t do anything, but what has changed, is I took a couple of days to not just feel sorry for myself, but once again I grieve over my loss of my physical ability to lead even a physically limited life. When I wrote that post back in 2013, I thought that the worst of it was over, that I had said goodbye to everything and that the only major hurdle ahead of me would be the transition into being bed bound, I was wrong. I guess I had forgotten all the steps that happened from diagnosis to housebound and I wasn’t allowing in any way that there was a strong possibility that there were just as many steps from housebound to bedbound. Once I had had time to think after I was told that I had PRMS it appeared to me that there were four major points in my future, points that would take a huge adjustment. The first was having to use a wheelchair, as I said before that is something not to be fought, I made that mistake and put myself through hell for no reason and I honestly wish I had given in a lot sooner. The next was housebound, that one scared the hell out of me, but in my post on grief I have explained why I found it easier than I ever thought and how I myself took steps to make it so. The third is bedbound and the fourth and final death, or I should say the stage when death is imminent, I didn’t realise that there were so many tiny hurdles along the way.

I don’t know why, but I never once allowed in my head to see that losing my mobility was actually not the worst thing that could happen and that the steps from housebound to bedbound would be quite so many or ever so painful. I thought that it would be a bit like the progress from walking to a wheelchair when for me it was increased fatigue that eventually takes my legs away from me. It made sense that it would be that growing fatigue that would force me into being bedbound and it still might well be, but nowhere on my scale was there anything about my internal nerves shutting down making both processing food and breathing beyond just difficult. I had never accounted for such things because I never knew they could possibly happen. I grieved when they told me I had COPD and that the mechanical side of breathing was shutting down and is probably the thing that will eventually kill me, of course I grieved, but grief doesn’t prepare you for what goes along with it. Maybe I just didn’t want to know and not thinking the whole process through was my mind protecting me from the reality. The slow downwards slope of the whole process of my bowels shutting down was another thing that I didn’t really think through to its final conclusions. I still had this mad idea that a doctor would fix it, which is something rather stupid for someone who has had nothing cured by a doctor for years.

Over the last four months my bowels have almost shut down completely, in the process they have been playing hell with my lungs. I never foresaw the pain, the distress or the simple tumour that living in this way would bring with it. I never once even dreamed that I would be still just housebound when my body got to this point, somewhere in the back of my mind, I saw this all as a long way into the future, but it’s not, it here right now. For four months, I have been kidding myself, playing games in my head that all I had to do was work with it and life would return to some form of normality once they brought out their wand and waved it over me. Every breath I take is telling me that that really is nothing more than a dream, I spend every day with bands locked around my ribcage and lead waistcoat that is being slowly tightened from my shoulders to my waist and when I lie down crushes me. At times, my breathing is so shallow that I fear I am not getting enough oxygen, but when taking a deep breath it sends pain not just through my upper, but also my lower abdomen, breathing becomes a difficult choice. That is physical, but the mental impact of feeling yourself dying a little with every day, is hard to accept and harder still to explain to others. Somehow, I have jumped forwards and combined two totally different time phases into one and the mental impact of that is almost as painful as anything my body can physically create.

I am missing me, but not the old me, I missing the “me” that I thought I would be and the way that I thought that “me” would live. I had created a dream to replace the on I had prediagnosis, a dream that suited me as it was gentle and it was forgiving and yes I needed to grieve the loss of that dream. Reality is a cruel and hard thing to face up to and if there is one thing that can make us face it, it is illness. My reality isn’t a gentle thing any longer, it is a violent and aggressive monster and like all monsters, it needed facing and bringing down to size before it took over everything around it. I am adjusting, I am slowly rebuilding and accepting what I have been blinkered to and it’s not an easy process, so I don’t promise I will be bright and breezy or that I won’t at times moan like hell, but I have to get this sorted as I am not ready to roll over and give up, not yet anyway.

Read my blog from 2 years ago today – 5/05/13 – The Personality Factor

I have managed in the last couple of days to make a complete mess of my systems for twitter post in the last two days, one day would be bad enough but two it unbelievably stupid of me! I can’t think how I didn’t notice or how it started happening, I have had this happen on a smaller scale in the past but this was a mega mess up which won’t clear the system until midnight tomorrow. I know everyone makes mistakes but……

Another door opens

A major question appeared yesterday, one I thought was in the past now and that both of us had come to terms with in our own ways, my death sentence imposed by my health. Those who weren’t reading back in June 2013, well click this and it will take you back to the day I was diagnosed with COPD and the following days were I worked through the impact and my conclusions at the time. Oddly although we both knew that my PRMS was equally a slow death, it was one where we had no time line, no point given where things might end or ever a time line of how my future would pan out. My diagnosis with COPD couldn’t have been more different and for that reason our reactions were very different.

A diagnosis with something slow moving, like PRMS, is always going to be difficult, but you don’t look at it as a death sentence, it is more a life sentence. You are going to die sooner than you might have without it, but it doesn’t feel like you are dying, it just feels like you are being given a very unfair and unbelievable future that none of us want to face. I don’t know if it is our age difference or if it is because we are very different people, but I accepted it with much more ease than Adam did. I suspected then as I do now, that it had a lot to do with him losing his father when he was just 10, I was going to be the second person he loved, who was going to leave him far sooner than he could imagine or handle. But as the months and eventually years past and I was still here, not fit and healthy but here, I thought he had accepted that there was nothing we could do about it and we had to just enjoy the years we had together as much as we could. I stopped thinking about it, yes occasionally something would appear on the news or in some TV program that would trigger a moment of thought, even discussion and occasionally tears from both of us, but you can’t spend your entire life just waiting to die. Life goes on and we seemed to be together on the same page and working our way through our life together. Then came the COPD, it was very different for both of us, as it was a totally different situation, this time I was given 10 years to live if my now diagnosed Emphysema was to kill me, or sooner if my PRMS managed as it has been trying to ever since, to squeeze my lungs so tightly I couldn’t breath at all. Suddenly the whole ball game changed and everything had a totally different feel. We spent days talking and Adam seemed to accept what the doctors had said and what I had decided, that life would go on unchanged, other than making a few arrangements for when my time was clearly up. In fact, I actually believed that Adam had accepted it far better than he did my PRMS, well he was older and had already handled the original diagnosis, so once I saw normality returning, I didn’t give it a seconds thought, I was so wrong.

Last night I realized that I had got it wrong, our short week of talking after the diagnosis wasn’t enough and we both still have a lot to work our way through together. I was wrong in the way I handled it, I did what I thought was right, to work it out in my head and then write it all down, discuss it and close the book there, separate from everything else. I have always like most people departmentalised my life, each part of it separate from the next and not allowed to affect any more than they had to, any other aspect of life. It is undoubtedly a coping mechanism, but unlike many others, I always made space in my mind to think about things even if no one else knew I was, nothing was boxed that tightly that I couldn’t see into it, work on it and close the door again until the next time. Hence a lot of my posts, glimpses into each room that I have revisited and felt a need to reassess or adjust what was going on in there. What I didn’t realise was that I was heading forwards with all the things my health was doing to me, while Adam was still holding everything back at the points we last spoke about it and that he hadn’t been giving me his fully feeling about any of it, because he didn’t know how to without causing me more issues along with showing how it really was hurting him. As so often is the way in life, we started to talk about it all far to late in the day, I was too tired and at the point where my body was shutting me down and I just couldn’t stay up long enough to really talk about anything with any logic or feeling. It isn’t just one of those things people say, men are not as good as women at dealing with emotions or about talking about them, I found outlets along my side of life, through friends at first then through writing and I hadn’t been talking to the person who I really should have been, Adam. I thought that I was protecting him, something we women are bad at, we always think we have to protect those we love, when in fact we aren’t protecting them, we are pushing them out.

Being given a ticking clock to live with isn’t a case of trying to not hear the tick, or listening to it every second of every day. It is like that heirloom grandfather clock in the hall that you don’t hear when the world is awake and noisy, yet the second the house is quite and you want to sleep, that tick is so loud that you want to take an axe and destroy it, but you can’t. When you do hear the tick it can drive you into places that you normally wouldn’t go and when you are there you want nothing more than to reach out, but you fight it over and over as you don’t want to hurt the person you are looking to for comfort, you believe they are handling it all so well. When both of you play that game, well the results are bound to get messy. This talking game we started last week, is showing up flaws in both our methods and showing me more and more that neither of us can be strong for the other, when neither of us have quite fully dealt with our own feelings, feelings we should have shared. I honestly thought that the time would arrive driven by my health when we would talk again, that that was the normal way people deal with these things, no one had ever shown me a way of doing it differently or a need for anything else, it appears that other things has brought the time around sooner than I thought.

It’s hard for anyone dealing with the unknown, even harder when it is something people never talk about openly or they don’t have people who have been through the same to turn to. I have never seen it, or like anyone else been taught how to die or how to help someone else who loves you to go through all that this process brings with it. It is on one level the worst thing anyone can face and on the other the greatest adventure anyone ever goes on, as its the only one that no one can show you what lies ahead or how to behave along the way.

 

Please read my blog from 2 years ago today – 27/01/13 – A loss of trust

Yesterday evening I discovered that I have been telling myself lies and doing so with great ease and accuracy. This is a little long I know but bare with me as the sequence of events is important. Every second Saturday…….

A new future….

I have always believed in the saying that “The first step of any journey is always the hardest”, it’s taken me years to realise just how wrong that statement is, the first step may be hard, but you can be sure there will be many as hard and some even harder along the way. It doesn’t matter how many times I tell myself and others, that I am at ease with what is happening to me, the facts remain the same, it isn’t that easy or that black and white.

I admit that yes those first few days after I had been told what was wrong with me and what I thought I was facing, were hell itself. I still remember sitting for hours just staring into nothingness and feeling more than just numb, but that is so long ago now that it’s happening now feels as far away from my reality as it did then from my dreams. What I didn’t know then and I am only really coming to terms with is that every time you notice a change it all starts over again. That doesn’t mean you spend your life in a start of grief, far from it, as although there is a constant downwards slope, those moments when you notice the slope and they are the moments when life stops for a few hours and you have to readjust. I know that losing my “voice” isn’t something new, all you have to do is read back through my old posts and it appears not once, but several times, but it’s mentioned because there has been a change that isn’t hidden, but is out there in the open, one that Adam knows about just as well as I do. It easy to hide, even from yourself the daily slips, the odd pain or the extra exhaustion, but it isn’t so easy to hide from your own brain making mistakes that a primary school child would never make. I remember writing a few months ago about noticing that I could no long do basic maths if I had more than two single digit numbers to work with, something I still have to do daily as I can’t help not doing stats on everything I do online. Yes, I do still have pages of spreadsheets, full of numbers and names all working together to not just keep me working through my daily routine, but so I don’t make too many horrid mistakes on twitter. I am reminded every day that I can’t do the things I once didn’t even think about, it may have been a long time since I could totally rely on my brain as much as a calculator, but two numbers, well that was to me a huge issue and sign of things to come. I suppose it was only a matter of time before I could no longer even work out time any longer, if I had been totally honest I was aware it too was going, for a long time now I hadn’t been able to trust myself when it came to counting how many hours were between going to bed and getting up, I counted it out on my fingers, but that was maths, the basic of you have two hours to watch TV, how many shows will fit, a nightly question, to go wrong seems bigger.

It is really hard when you come face to face, in a situation where you can’t cover it up as just a mistake, like, it’s now happened three time in a week with a witness, you have no choice but to deal with it. They are those moments when inside you go cold and your brain goes into a numb explosion, time stops and you are face to face with the monster you knew was there, but you had paid no attention to. On the surface, you recover in seconds, but inside time is still stationary and your dying, your spinning around trying to find the pieces that are missing so you can fix it all, but there is nothing there, just a huge void that has been crossed and there is no way back. Life goes on, you perform just as you have always done, yet still inside you are looking downwards into that void and it feels like it’s pulling your very life force down into it and there is no breaking system, but on you go, you get ready for bed, or make your dinner, whatever is right for that time in the day, but your not there doing it, at least not for now. It can take several days to accept, to reorder your expectations of yourself and your abilities, days that every silent moment is spent fixing, gluing and patching, but most of all grieving for yet another part of you that has gone.

It isn’t just that first step, it’s every single step that is anywhere that isn’t the norm. At times they are separated by months, at other just weeks or even days, you don’t notice them all happening at first, but bit by bit they make themselves known, they happen more, or in a bigger grander fashion, while others snap and their there, or there totally gone. We all have our own expectations of ourselves, we know what is us and what’s not, so when someone tries to tell you your being silly or that it doesn’t matter, it just makes you angry, it does matter, it’s you, it’s you that is breaking and vanishing not them. I don’t care for people who say stupid things like you sound fine to me, well do they even know me, where they there with me when I was at my brightest, my biggest and boldest, did they even know of my existence then, so how do they have the right to say how I seem or how I sound, when it comes to me, they know nothing.

I don’t know how others deal with a body and life that has diminished, what I know is I grieve and I move on. I would go as far as to say that it’s a must, you must grieve, you must get angry and do all the questioning and pain required for each of the caverns that lie behind you, then hold your head high again and start walking through this new life, as that is what it is, it a new life with changed boundaries, changed expectations and a changed reality. It doesn’t matter how small the void or how huge it is, whatever it is, it has an impact so changes have to be made, adjustments that compensate and remove the dangers, but you have to be ready to for them to not work and to have backup plans and alternatives lined up to go. I have learned in the last year that there are things that it doesn’t matter how hard I try, how many plans and back up there are, that there are things that have to be handed over to others to deal with. When it comes to my memory, there is nothing that I can do, to make me do things, taking my pills and showering are just the start of the list, I know that. I have tried everything possible to remind me to do things, but something stops it working, for reasons I can’t find the answer to just having a reminder set up that no one but me sees, just doesn’t work. I either totally ignore it, or I forget I ever saw it. I faced facts and handed Adam the job of forcing me to do what I need to, the future clearly holds a list of things that will also have to become his role to ensure they are done. The solution for functional actions are there, but no one can think for me, speak for me or even write for me, each function I am loosing from adding up numbers, to forgetting the next word and stuttering, I am sure would tell the Nuro’s a story of what is happening to my brain as the lesions do their destructive job and probably what will go next. Knowing make no difference, I knew my brain would stop functioning as it once did, I knew speak and memory were in danger but it doesn’t make any of it easier, every step hurts and every step is a new beginning, in a newly shaped world.

 

Please read my blog from 2 years ago today – 03/11/12 – I’m still here

Within second of my lying down in my bed last night tears started to flood down my cheeks, not trickle, truly flood and in my head I could hear myself screaming “I am still in here”, over and over again. Almost every muscle in my body tensed and it took me a few minutes to get control of myself again, and bring ……….