You can’t scare me

It’s a force in my life, that in the last few years I have become wildly aware of, and one that I have seen in so many people, but where it comes from, I think is beyond just personal. There is one thing though that I am totally sure of, I might have been born with a kernel that grew, but I wasn’t born with the strength I have today. Without a doubt, it has carried me through the past 15 years, but started like all other forms of strength, because it was exercised and worked until it has reached the point where I am today. I’m almost sure, if you sat down all those people who you perceive to be strong and asked them if there had been a trauma in their earlier lives where their strength grew from, they would all answer yes.

I have made no secret that both as a child and a young adult that I was abused. Up to the age of 12, I had what I thought was a relatively normal childhood, including being bullied at school from the age of 6 to about 10. No, I didn’t turn on my tormenters or do anything that stopped them, other than I grew. In the space of a year, I shot up in height to 5 foot 6 inches, just three less than I am now. At that age, being tall translated to most as being physically strong, my tormentors backed off when they suddenly realised that I was taller than them. It did something else to me as well, I became not quite a loner, but one who gathered her friends from that select group who were also tall. We found that those who didn’t know us, treated us very differently, not quite, but almost as adults. It also sent me on a collision course with my father. I still don’t understand why, but I remember all too what happened. In some ways, I was lucky if you can call taking a beating that lands you in A&E, as luck. It was from there, though, that I escaped him. I had done something I had never done before, I had said no. I wasn’t until many years later that I told anyone what I had said no to, but I was free of him and I spent the next few years in safety, but it was all part of a trail of abuse that lasted nearly 14 years. They say that we all without even knowing choose men like our fathers. Well, when I married at 16, I proved that theory to be true.

So there is my trauma, a building one that combined mental, physical and sexual abuse. What all of them taught me, from the very first of being bullied, was to not fighting back physically, or verbally, as usually it meant it all ended the sooner. All I had to do was hide inside myself and let them do whatever, it was they wanted, and it would end. Fighting the mental abuse was far harder. I did whatever I could to avoid it, again, though, I protected myself by hiding inside and on the surface appeared compliant. Unlike the physical side, that one wasn’t quite so effective, as it took me many years to eventually break free and believe what I was telling myself. Just like my luck as a child, I again was lucky, this time, though, it was depression that was my savior. Just over half the way through our marriage I broke. I spent six weeks in a hospital, then I had two years of weekly one to one sessions with a psychologist. What she did for me, was to put everything in my past, where it belong to be and to make sense of so much that I just didn’t understand until then. I covered what had been happening with my husband, it’s amazing what you learn to cover up, after all of those years. She may well have worked it out, but if she did, she never said so, but to me, that was when I started to become truly strong. Up until then, the strength that I had was in small pieces scattered around all over the placed and I wasn’t able to draw on it, outside of the events that had developed them. Until then, bravado had been my only protection from the world, and as we all know that isn’t strength, it’s an act. I learned that I was worthy of life and that I was more than capable of surviving, but I wasn’t ready to put that into action. I stayed with my husband for another three years, half of which he was away at sea, but I was growing all the time, gradually working up to the day I would leave.

All the way through my early life my strength was tested. It frequently failed me, which made things harder, but when I did leave, I felt ten feet tall. I was 28 years old and I was reborn, that was exactly how it felt, that this was at last my life, not others, just mine. Over the next few years I proved to myself that I was a capable human and I wasn’t going to be treated like that by anyone, ever again. I made a couple of notable mistakes, but the difference was, I didn’t let it last, as soon as I recognised what was happening, I ended it and both, just made me even stronger. Clearly, this a pocket version, there is so much more that I could write, the death of my son, being raped and other events that played their part, other events that changed me, formed me and made me who I am. All of this, without a doubt, is where my strength grew from, but there are times when it alone isn’t enough, that’s when I draw on the one other source that I now have, love. The love I have for and receive from both Adam and my daughter, Teressa, that is the final cherry on the top if you like. My health has to work really hard to break through it all, and yes, there are times when it all fails, but I now have knowledge that I am and will always be strong enough to face whatever tries to destroy me. No matter what, my life is in my hands, nobody else’s.

When it comes to my health, well, the strength that life has given me, means that I won’t let it get me down, but it does win in other ways. No matter how strong you are, the things that chronic illness does to you, at time will always win. Life has taught me, that neither physical or mental pain, has any real power when you are confident about yourself and those around you. It gives me the determination to not let it win, and to not let it get me down. I am armed against it in so many ways, but I’m not stupid either, another thing life has taught me, is to choose your battles, that way, you normally win.


Please read my blog from 2 years ago today – 08/05/2014 – Inner calmness

It time to stop looking on the dark side, yes I know that many of you will have thought that, but the reality is it was more my own way of reassessing where I am and how things have changed. The conclusion, well they have changed, just as I knew they had and I am still as always adapting to them. I have to admit that reading the posts from two years ago have really shown me just how much I have slipped down the progression scale, but that is the truth of my illness there is only one direction. I know myself if I had been shown this through a time machine just 5 years ago, I wouldn’t have believed how quickly I would deteriorate. I guess we all go around with blinkers on, telling ourselves we are fine and that nothing that dramatic could possibly ever happen in our lifetime, far less just a handful of years. I suppose that is no different to any of the other facts in our lives we have no control over, like getting older. None of us, despite…..

Three groups to look at

Change, probably the hardest word in the world. Just the word is enough to send some people into a flap and believing that there is no way they can do it. As an Operations Manger managing change was part of my job, I saw many who struggled with the smallest change in there otherwise maintained position, people who would be almost in tears as they were informed that something simple in their daily routine had to change for the efficient running of the company. If you have ever been faced by an entire call center and watching their faces while the center manager is explaining why the shift system has to change. Some people say OK without waiting to hear what it really means, some say OK and add a but, other without detail of any type react as if the end of the world has happened at that second. The group that I found really did deal with change the best were the middle group, they were logical about it and listens in a level headed way, ready to here the reasons and open to even suggesting alternatives. I think this group would also be the ones you find stepping into a world of chronic illness with a greater ease.

I am one of those people, I remember crying when I was told I had MS, crying a lot, I am not superwoman or made of iron, I was scared and all the other natural reactions. Once the tears stopped I then started the questions and the offering answers. When I became housebound, I didn’t really remember crying, this wasn’t to me an emotional point it was a point to manage my change and to find the good and bad points logically, as I have continued to all the way though. Loosing my job last year was again an emotional point, but again I moved into the question and solution phase. On the surface some would argue with me over me being in the middle group and the reason they would argue with me is simple, the damage I have due to the lesions mean that I cry when it means nothing and I shouldn’t and it is so hard to explain that when you have tears rolling down your face. So ignoring that, I am in the middle and I believe that if you are, you too will find adapting to almost anything easier. To manage your own illness and your own life with it, is not really different to managing your career and what changes in that. Illness controls your life just as your boss does or did, so you plan around it. Setting your goal, arranging your progress and adapting daily to what is possible. For someone like me that is the logical approach and one that for me has actually worked. People in that middle group don’t giving in when there is another option, but comply when there isn’t.

The final group, well they make things difficult for themselves as they jump to conclusions, convincing them that what they think is wrong, getting them to listen and actually engage with the situation is really hard. They instantly made a decision and they don’t believe what they are told because of their decisions. Should they decide that life once chronically ill will be unbearable, then it will be, they make it unbearable for themselves. I have found myself spending more time with them than others. Finding the reason they think what they think is always the key, find that and they find it easier. When their barriers are high then the problem can be almost impossible to over come. I have met others with MS in this group and they are the ones who don’t even want to consider that there is a way though, they are normally the people who say they will try something and normally don’t, as they had their fingers crossed behind their back when they said it, and actually don’t even try as they don’t believe it will work. Belief is the key and that is individual to each of them, once they do believe thought they progress quickly it is the initial belief that they have to find.

Back to front I know but I have left the first group to last, as they have always worried me, no one cares that little, no one just shrugs their shoulders and accept everything that happens to them without any question or reaction. I didn’t worry about them as employes, they made my life easy, but I worried about them as people, I worried that they were just shoving everything into a corner and locking it there. I worried that one day they wouldn’t be able to lock them in there anymore and all of it would tumble out all over the place. We all know these people, they are actually normally fragile, their packing into the corner eventually explodes and they find they didn’t cope as well, as they tried to tell everyone they do and what does it matter anyway. Even as a friend I have never known how to advise on anything and they leave me at a lose. I always find myself caring for this group and I turn into a mother hen without meaning to.

Three groups which if we are honest, we can see ourselves in one or occasionally in two, there are always boarder liners. Three groups I found through my working life and I believe are the same groups when it comes to dealing with illness and being housebound. If you know your group, well I think you can then use that knowledge to understand yourself and how to manage your situation so you still have as good a life as possible, because when it comes down to it, it is our own personality, our own strengths, our own weaknesses that dictate how we live and find happiness.

The past is repeating – fact

In the last few months I have been keeping notes about my left side of my body, I am not sure why, other than an intelligent guess that I have more lesions on the side of my brain that controlled that side, I have always had more problems with it. It was the complete loss of the use of my left hand that first forced me into staying at home and working from here until I was made redundant last year. With out any use of my hand for several months I couldn’t use my wheelchair and I still can’t as I have little strength in it to this day. It took the best part of six months to get enough use of it to not require the brace I wore throughout that time. I tried hard not to wear the brace more than I had to but my hand was safer when in it than it was just dangling around from my elbow, below that point I had no sensation or reflexes, it was a constant danger to itself, I leaned quickly that the braced and held by my other hand avoided unnecessary bruises and bumps. There had been little change in it for a long time, but I notices at the same time as the pain increased in my left leg, more and more of my left arm was loosing sensation.

The palm now is almost gone completely it is a strange sensation to watch my touching it and not feel the touch. When I make a fist the palm feels as though it has died and stiffened, muscles and nerves seem to cause strange feelings around dead areas. It would be like you holding a disc of hard plastic about 2 inches round in your hand and them making a fist round it. When making a fist my finger tips no longer actually touch my palm in the normal position, I can’t get them there, if you place your finger in my hand I wouldn’t be able to tighten my fingers round it, you would feel almost no pressure, the grip has gone for all practical purpose. Add in the constant strange slow pins and needles feeling also tells the story that the nerves are trying to spark with little success, this also happened the first time round. On the good side, although my finger movements are slower they are still there, but getting the right key on the key board without checking where my hand is I totally hit and miss. From the best point that it recovered to a few years ago it is now quite rapidly regressing, bit by bit it is dieing again, I was cutting an onion the other day and my thumb collapsed, I couldn’t grip with it, I also lost all strength in the muscles in my left upper arm. There is no doubt now in my mind that it is once again dieing.

That on it’s own would be bad enough but I have also started to get some of the milder symptoms in my right hand as well. What I can and cannot do is changing again. I have mentioned little bits of this in my posts from time to time but I feel that it is no longer something to keep an eye on but to document as a fact, my left arm is vanishing and my right has quite a few sympathetic symptoms. As long as I have enough strength in my wrists then I don’t have a problem that needs to be braced, it is when the wrist goes there is no option but to brace, as a hand that hands limp on your wrist is completely useless, I am wondering though if I should by a right hand brace in case as happened with my left, I wake one morning to a dead hand.

As I learned from the first time round there is nothing at all the medics can do, I remember the look on my Dr’s face when he found not reflexes, he sort of raised an eyebrow and said ‘well, yes, it’s dead’. He looked totally lost when I asked if there was anything that could be done and all he could say was we just have to wait and see what happens. That was it, I went home knowing exactly what I knew when I went in there, this also tells me that there is no point in even telling them this time. One more step written up and a start point in many ways for a written tracking of what the future might hold. Position now, just as before, wait and see what happens.