I am in one of those “I just can’t be bothered moods”, not normal for me I must say. In fact, I don’t remember when I last had one, I just want to do nothing, not here online or anywhere else, I just want to curl up and disappear for the rest of the day and worse still, I don’t know why. I hate this, I know some people would say, just go with it, take a day off and do whatever it is your want to, but only if you want to, but I can’t do that. If I tried it, I know exactly what I would do, I would lie in bed awake and trying to work out what on earth is wrong with me, going round and round in circles not getting anywhere and there is no point in that. My inbuilt person, the one created by my family, says that I can’t just stop, there is always things to do and there for they have to be done, the rebellious part of me says “so what”. I actually often wish that I could fight my none stop life, the one that now has learned to let me sleep, but hasn’t learned, to allow me to do nothing at any point in my entire life. It’s strange how there are so many different people out there, all with their own lives and their own worlds, most that we will never know anything about or understand even less, but still, we are split into two distinct sections, the driven and the drifters.

I get some of the ways of the drifter as I have never had goals when it came to my work life, not even a great desire to do any particular job, I drifted into all of them, they were there and I did them, but that was when the driven part of me took over, whatever I drifted into, I had to do my very best at and nothing less was acceptable. Trust me being driven is no breeze and it has pushed me to the edge of self-destruction many times, as I might be given my all to my work, but I still had to give my all to being a homemaker, a wife, a partner, a seamstress, a knitter, a DIY expert, a nurse, s designer, a parent, a cook, an IT expert, a historian, an artist, a baker, a gardener and anything else that appeared along the way. I had to be as close to perfect at all of them and anything less, was my fault, my failure and I had to try harder, I had to, otherwise all I had was failure and stress. There was one thing I never thought about being even good at, far less perfect at and that was doing nothing because I made sure it didn’t figure in my life. I know without a single doubt that is why I found being disabled so hard, as I had to accept that nearly everything that had been my life, had gone, been stolen from me and I couldn’t get them back, so I started new thing, I taught myself new skills that kept in work and kept me constantly busy as I always had more to learn, until the job ended and the doors closed firmly on my working life. I started again and my drive has brought me from not even knowing what social media was, to going beyond what most people even dream of achieving, over 70,000 followers isn’t bad for a woman in her 50’s, with nothing much to say, well I guess I proved myself wrong there at least.

I guess the truth is I am now scared to stop, to take time out just in case I can’t make myself start again. Why did I say I guess, as often happens I type something and as the words appear on my screen, tears appear in my eyes, because I have just told myself the truth, for the first time as I say it here, I am also saying it to myself. I am scared to stop, I am scared that if I allow myself to slow down to take time out and just do anything outside my routine, that either I will upset things, as I know how much MS loves routine and pounces whenever something changes it, or I will find myself at that point when my health will take over and I will never come back, never continue with what I have started, making it all pointless. Today is one of those days that I often stay silent about, a day when I could with ease just give in to it all, sit back an announce to the world “I am ill, I don’t have to do anything.” No matter how true that statement is, it is also wrong in so many other ways, put on top of that “the I can’t be bothered mood” and it turns everything today into a battle. I don’t need to read back, to double check what is happening to me, I know, I know without any doubt that my health is doing what it said on the box, progressing, and there is nothing I or anyone else can do about it.

The last couple of weeks I have been getting Adam to push me into doing things like having a shower, but I have also been pushing myself, trying to bring back some of the old me, the one who had long nail, smooth moisturised skin and well-brushed hair, trying to put back on the outside in the hope it covers what is in the inside. It hasn’t, it has simply given me a distraction, a few minutes causing myself pain in an attempt to rub in creams that soften the hard, layer skin on my feet. A few minutes trying to hold on to a nail file that would prefer to be on the floor, or that brush that gets knotted up in my hair because I can’t twist myself far enough, or hang my head forward without losing my balance. It doesn’t matter who does the pushing, as it is just camouflage for the fact inside is still failing and doing so faster. If I were to stop now, to take a few days out, or even a few hours, I would be opening a gate that I don’t want to look through, I have never wanted to look through as it always shows me what I don’t want to see, so I push again, I line up those daily goals and regardless of how I feel, I work until it is all done once more.

Please read my blog from 2 years ago today – 29/07/12 – The past is repeating 

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. Without……