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……

 

 

 

 

It’s messy

I knew that I would pay for it, but not quite as quickly or dramatical as I did. By 1 pm, I was in pain, real pain, my guts were telling me that it didn’t want all that stuff, I had given it. It might have been tasty, but by then, that, was forgotten, and my emergency visit to the loo, made my memory of it, even less lovely. It’s always the same if I eat too much all at one time, or within a very few hours. My insides for over a year now has worked on the principle that it has only so much space, so, what goes in, has to be balanced by the same amount out. No problem there you might think. Wrong. My insides now work about ten times slower than anyone else’s I have ever known. From mouth to gone, takes 14 days, relieved once every two days, the final one, is normally 12 hours of a dull ache, with the odd spell of intense reminders that it doesn’t work in a straight line. But I had overloaded the system on the entry side, pain, pain, pain, then run, or, however, you translate that on wheels. Just to prove that I really don’t learn, later, I did it all over again. Cramming in four slices of streaky bacon and two fried eggs, at the time of day, that I would normally, slowly, eat a small bowl of nuts. It, didn’t like that much either. No run to the loo, just discomfort right through the remainder of the day. Oh! I love life!

I guess, that, today, has to be back to normal, routine, has to reign. I go through this kickbacks every now and then. It’s not so much a “Why me?”, as that’s a truly stupid reason, it’s more “Give me a break”. Health is relentless, days fold into each other, and time never seems to be on our side. In some ways, it is the next step on, from the picture grid on the “sticky post” on the first page of my blog. The final picture in the grid is someone lying asleep in bed, beside a table, that is full of drugs, the step on from that would be where I am now. To put it into a picture, I think would be impossible. You would be looking at a thousand different faces, each showing a different expression. It isn’t just boredom or frustration with life; it’s not depression or giving up; nor is it anger or grief; even confusion and annoyance doesn’ t cover it; as it a touch of all of them all; with a huge measure, of just wanting to scream “Let me out of here!” Most of the time, life is fine, more than fine, but then this pop’s up, gnawing away at you until you just explode inside. Despite the fact that humans are creatures of habit, we are also worn down by it. I think I can give you a glimpse of it, from your own memories. If you think back to when you were a child, and you were off school, as it was the summer holidays. It has been raining for a couple of days and all you want, is to go out, with your friends, but your mum, wouldn’t let you. Remember how that felt. Mum was the enemy, the weather, an even bigger one, and life just wasn’t fair on every level. Then to just make things worse, you asked for fish-finger for lunch, what you got was a burger. It is all those pent up childhood emotions, on steroids and multiplied by a thousand, but not aimed at the petty, it’s aimed at the essential. I’m right now screaming for freedom, not just from my home, but from everything about my life.

If I had made it all the way through the past 8 years without feeling this at all, then, I would be a truly exceptional person. The fact, that I have been here before, means that I know that it passes. For a few days, I am going to be unsettled, fidgety and desperate to do something, anything, that I haven’t done in the past 8 years. Logically, that is impossible. Right now, logic isn’t my friend, if it was, I wouldn’t have eaten what I did yesterday, I knew what would happen, but I still had to do it, just as I had to get out of my chair and walk the other day. The driving emotion was different, but the actual base feeling was identical. No one wants to feel that their life is actually a prison, far worse than it would have been if they had been physically locked up, as you can’t argue with iron bars. My bars are different, maybe not made of iron, and yes, every single one of them, is invisible, but in so many ways, far worse and I did nothing wrong. When feelings like this appear, it makes every part of life difficult, in some ways, because they are just feeling, even harder. They aren’t things that talking about, will make better. Talking is about finding solutions, but there are no solutions to feelings, their just there, annoying you constantly. Experience tells me, that all I have to do is be patient and they will calm down, become fussy and eventually forgotten.

I don’t know if it is because of my health, or if it just the way that human brains work, but, I’ve noticed that I forget quickly. If, it wasn’t for this blog, there are so many feelings and sensations that I have gone through, that I wouldn’t remember. Often when I read a back post, I find myself somewhat alienated from it, as though I am reading someone else’s words. Clearly there is recognition of whatever it was, but the words, the finer points and the small details, I will have forgotten. Just as I recognise how I’m feeling, if you had asked me to describe it a month ago, it would have been vague, somewhat beige and lifeless. Have I forgotten, or is it just my mind protecting me from the worst of everything, just holding a mark, rather than a scar?

Today, well today, is going to be about bringing back the lighter brighter me. It’s going to be about adding the colour, the depth and the vigour, I’ve wallowed too long. We all have to wallow at times, but as long as we can call a halt, turn it around and push it back in its box, there is nothing to worry about. My fatigue and pain levels are high, so it’s going to have to be a gentle kick up the backside, but it has to be a kick hard enough, to push me in the right direction. I believe totally, that every part of our health can be and is, to some extent, under our control. In some ways, the last few days prove that I have stopped doing what I should and I’m paying for it. Mental or physical, we play a role in just how bad or good things are. I know all about relaxation, posture and mood, each plays a role. I dropped them all a few days ago and it time to pick them up again, it’s time to work on putting things right. That’s the problem with wallowing, as much as we need to do it, it’s hard work fixing the mess that the mud makes. It won’t be instant, but the wet-wipes are now out.

 

Please read my blog from 2 years ago today – 20/11/2013 – More on the list

Yesterday’s surprise of getting an earlier appointment wasn’t the only one, not long after I completed my post the phone rang and it was a call I had been waiting 4 or 5 weeks for. I have called the practise…..

Week five: It’s not over

If there is one truth that can’t be escaped, it is the fact that there are as many right ways to live, as there are people on this planet. We all like to think that we have got it right, that we are the ones who can show other the way to be happy, but the truth is, none of us can. When it comes down to it, we are the only people who have both the right, and the understanding required, to know what is right for us. So why is it, that every day millions scour magazines, websites and TV channels, for that ultimate piece of wisdom, that one must have item, or that perfect person, who will make our lives better, if not forever, at least for today? If we were content in our lives, we wouldn’t keep searching in the hope that there is something out there, that we just have to find, and our lives will be perfect. It’s a fact that one group of people have made a living out of for the last century, the marketing men, they know our self-doubt and they play on it constantly. The more that they exploit that discontent, the more they make it grow, creating the perfect circle that keeps them in work. They, though, are the last people that we should listen to because if we are discontent with our lives, it is only us that can fix it and that takes a huge amount of trust.

When I was first diagnosed with PRMS, I went through all that normal things that I believe is all part of accepting what is happening to us. It is without a doubt, one of the hardest thing to go through. Our entire lives have just had the rug pulled out from under us, and rather than landing on the floor, we are like “Alice in Wonderland”, falling and falling and falling, with no idea when or where the bottom of that hole is. We grab at all those roots sticking out of the sides, at all the objects that we pass, the occasional one, appears to slow us for a while. All too often, they fail and we go on free falling and searching. Eventually, as time passes, we learn enough to slow our speed down to more of a float than a fall, but floating in space, isn’t an answer to the millions of questions no one has the answers to. I believe it is at that point that our future is really written, we either accept totally blindly, that there are no answers, that this is our life and we had better get on with it and live, or we fall apart. Blind trust isn’t something we as humans are trained to do, in fact, we are brought up to do the total opposite. We’re taught that everything has to have an answer, that all illness has a cure and that doctors are gods. That if we just demand enough, complain loudly enough, research and demand again, we will get better. They lied to us. But if you can accept that, and then take that leap of faith, to put your trust in nothing, and no one greater than yourself, well, you’re still not going to get better, but you can have a good life and you can stop both floating around and better still, falling.

It goes back to my opening lines, ” there are as many right ways to live, as there are people on this planet” and that isn’t changed by health. Actually, I think our chronic health, makes it even more true. Like it or not, society sees us as a subsection, not quite like them, but regardless of that, we should still fit into the plug hole created for us. You can hit yourself over the head with a mallet forever, once you have a chronic illness, you will never fit, ever, again. Society, quite wrongly, puts health quite far down on the list of important things required to be seen as a successful human. We judge ourselves by our looks, our brains, our personalities, our earning abilities, our social acceptance, social standing and our likeability, not all in that order, but all more important than health. Wrong, because without health, all of those fall apart. As we were falling all those things bit by bit were being blown away be the updraft, we may not have seen it at first, but eventually, we can’t help but have to. Keep falling and you fall into another endless pit, the one of depression, make that leap of faith and decide to trust yourself, to build your own life, your own standards, and your own understanding of self, and you stand a chance of living well, despite it all.

For me, one of the things I had to get through to my pig-headed self was that there was nothing, I can control nothing and there were no battles that I can win. I didn’t possess the power to change anything, it was all going to happen just the way it wanted, regardless of what I did. Friends left, work left, money left, health left, mobility left, looks faded, weight went on and the outside door, closed forever. I couldn’t change a single thing, or control even a single hair on my own head. The only thing I could do was live and that had to be my starting point. Not much to build from you might think, but it was the only thing I had, that hadn’t left, that I had true control over. We all have that ultimate power, to decide if we live or die, it’s the only thing, that once you have had what feels like everything stripped away from you, that is left and is ultimately the only thing we ever have true control over. It took me three years of being housebound, to realise that I had to stop looking outwards for the answers and I had to start looking inwards. If we are going to be happy, if we are going to have a life that means something to us first and other secondly, then inside is where we all have to look. It’s not always pleasant and it’s often almost impossible when your fighting with a body that does what it wants whenever it feels like it, but inside us, is where we find the true us, our true desires, needs, wants and goals.

Recently, I had forgotten all of that, I had let myself be beguiled by all those baubles of life that none of us really need, the things other think we want. I had let myself question what was happening to me and where the answers were to making it all go away. It couldn’t be made to go away 14 years ago when it was diagnosed, it isn’t going to be made to go away now. I can’t get back those who are gone, or the things that I lost. After 5 years of stability, I was falling again and life was out of control. I can see clearly now what through everything out of kilter, why I wanted so badly to make things change and it was all my own fault. I stupidly thought that accepting the loss of being able to walk was as simple as sitting down on my wheelchair. I didn’t think that I had to do anything else other than that, after all, I had done it before. Because I didn’t take the time to go through all those steps of loss, and just leapfrog over them all, what I did was open a huge gash and blood was flowing out in all directions. My attempts to patch it were feeble and ineffectual, I was in denial of the fact I was grieving. When you grieve, you don’t just grieve for what you have just lost, you also open all the grief you have ever felt, in the past.

Every step that our health takes, even when like this one, we know it is written there in our future just waiting for us, still hurts. I thought I had learnt that lesson, that I was passed all that stupid stiff upper lip rubbish. It has its place in front of other, but to ourselves, never. I need to look inside, to myself and to live my life, not the lives of others. I have to accept again and to rebuild around what has happened. Just being able to make my way around the house without bumping into things, is learnt skill, it’s not acceptance. Enjoying being able to do things for me again is a bauble, not acceptance. Finding pleasure in just sitting quietly enjoying a meal I made and a break from sitting here at my PC, is emotion, not acceptance. There is no comparison, nothing that can even bring them into the same sentence. My legs are never going to carry me more than a few steps ever again, fact. Easy to say, even easier to type, hard, really hard to accept. But I have to and I have to do it fully, without brushing any of it under the carpet and hope that it will somehow stay there.

Please read my blog from 2 years ago today – 14/10/2013 – The truth of what life requires

Another week of who knows what? I know that logic says that if you are housebound and ill that everyday should really be like all the rest, but it never really is. I thought when I was no longer working that I would find it impossible to…..

To the Newly Diagnosed

Thanks to something I read on line early this morning I have been left thinking back to when I got my diagnosis and what I could say to someone who has completed the first stage of any invisible illness, being believed and going through the battery of tests. At that point, it feels as though you have a million friends as everyone who knows you, even if it is just because you pass them in the corridor at work, all seem to care, all offered a friendly hand and tone of concern, or at the very least a sympathetic smile. Those first months are like nothing I had experienced since the death of my son, the way I felt and the way people were around me, was just the same. Some avoided me as they didn’t know what to say, others through their arms around me, though I hardly knew them at all and inside I was a mess. I can’t tell you how long that all lasted and just like grief, as that is what you are doing, grieving for the life you think you have lost. It slowly changes and slowly you come back to being yourself, just as slowly you also start to realise you haven’t lost your future, it has just changed.

It is natural that as soon as you have the name the definition of what is wrong that you will dive into finding out the worst and the best of what is happening. At this point I would recommend not to make changes that are not needed right away. Let yourself settle and be clear what is wrong and what may happen, remember those words “may happen”, worst case scenarios will always be in your mind but they are that, the worst case scenario not what is guaranteed to happen, nothing is 100%. You don’t need to make life changing decisions on day one, there is time and you need it to be sure of what is really happening in your body. I don’t like or believe in fighting it, my life has shown me that what you fight often has a habit of fighting back, I recommend the pacifist role with this one. Get to know your illness, not the one on the computer screen or in a book, but your illness, the one that is personally living with you. Get to know what upsets it, what makes things easier and what allows you to live well. This is the closest and most personal relationship you will ever have and as such it demands respect, treat it badly and it will treat you badly.

How each of us handle these things will be different, but for me I decided to be upfront with everyone, my illness was visible by that point as I walked as though I was drunk at times and my speech often backed that up so sending an email out round the company telling them all I had MS and that at times I may appear drunk but I’m not and if I fell over a helping hand to find my feet would be appreciated. New staff I had to manage were told at induction and other than that life appeared normal, to those I worked with and still had at that point as friends. Openness is my way of living so to me it wasn’t a difficult thing to do, some I know want to keep these thing private, but I see it from this point of view. People judge you all the time, a slurred word or wobble is enough to start whispers, so if your illness is visible in any way, I would recommend that you tell everyone you are in constant contact with, you have enough to handle without gossip and it’s twisted results.

Those three paragraphs will I guess took for me about 6 months of real time to work through and to be settled with, from that point on, well it depends on your illness. The answers to some questions you might have are probably through out my blog, but I hadn’t before compacted my advise to the newly diagnosed. All of us react differently to the same situations and I would stress more than anything else, your life isn’t over yet, it’s only over the day they put you in your coffin and you still have a life to live, so live it to the full, more than anything, be happy and find as many ways to be happy as you can. Everything in life is easier to handle when you remember to smile.

Finding the hope

I seem to be spending a lot of time crying just now, not something I want to do but something that I have to do. I am not normally the type of person who wallows in self pity, but to be honest it is more grief than pity. I have for to long been convincing myself that I carried off an award worthy act of everything is OK, this is my reaction to learning that my act was fooling few and some not at all. As creatures we really do think to highly of our abilities to fool the world, when in fact the only person we are truly fooling is ourselves, well that broke down, so what the world moves on and this is a new day. See I can say it, do I believe it, well yes and no. I believe it in that it is a fact, but I don’t believe it, when the tears start again.

I have had some wonderful comments and messages both here and on Twitter and I thank all of you for what you have said and if any of you doubted that I would rip the pain from inside me and slam it down in words, well I hope you have lost those doubt, there is nothing that I won’t pass on to those who will read, otherwise what would be the point of doing any of this. This is day three of trying to put myself back together and I am getting there, yes there are still tears but there is also a relief that I have at last been forced to look at myself as I am now and put to bed the idea that I can some how claw my way back to who I was just 2 or 3 years ago, if not who I was 10 yrs ago. It is the old me that I am grieving for because I now see she has truly gone and can never return. This stage of my illness is a hard one and I doubt if it will be the last time that I put myself through this, yes I do realise it is me that is the root of this, not anyone else, everyone else saw the truth and politely worked with it.

It is mad how much we can upset ourselves, and how much of our lives is spent trying to hide from what all other know. The simplest example of one we all do it the kidding ourselves daily when we look in the mirror to the fact we are growing older or that we have put on some weight, I was kidding myself about everything. I know I had written before about loss of concentration and so on before but I had sugar coated it, the stark reality was to hard for me to take, so I built a world that let me ignore it and hid. I am now standing outside that world and facing the one that everyone can see and has listened to for years.

I accepted years ago that I can’t escape this house, that this is the space I have to live in and there is nothing else available to me. Now I am having to accept that I can’t escape this body or mind either, there is nothing else available. I have cried less this morning and I feel stronger in myself, more able to see a way through if you like. Today has started with a more positive feel to it, a feeling of being myself who ever that is, but I suppose it might not be as bad as I feared, after all I don’t actually have much of a choice do I.