Trail Of Light.

I hope everyone's Easter was amazing and everyone enjoyed some much deserved rest and reflective time to one's self. Today should have been my first day back at work after the holidays off, but instead I spent it in a long consultation about my afore-mentioned referral for the drug Lemtrada. To recap: this is an infusion based drug, taken for five days then repeated again a year later for three days. I'd say I've been feeling pretty daunted by the prospect of it and going into that appointment today and talking it over cleared some stuff up for me so, I'm kinda going to go over that right now and just vocalise where my head's at right now to help process it all. The appointment started off with a mini flip-chart explanation of what MS is and how normal neurotransmitters work and signals to the brain are disrupted due to the attacking of myelin sheaths in people who suffer with this condition. Looking at the charts and all the scientific jargon made me feel a b...

Happy  Spring ! ( ok , well kind of…). The weather isn’t sure what it’s doing at the moment and I can feel my body trying to fight of f  the dreaded lurgy just  as  we break off for half term. I mean, sod’s law will have it that on the stroke of midnight on Good Friday, I will feel less than good, but I’ll get on that and bust out all the weapons of my immune system and eat a kilo of honey and hope for the best.    So, for good news.  I spoke to my consultant who , with some pressing and reasoning, have been put forward for a  Lemtrada  pre-assessment. Now, I don’t want to get too pumped up about this because the results may actually show it’s not the right thing for me, but after speaking to a friend and reading some forums around this treatment, I really want to get on it.    Lemtrada  is an infusion taken in two doses; your first lot, over five days and the second lot over three days a year later. It kicks out ...

The sharp, blaring trill of the alarm reverberates against every surface of the room. You think “Is it that time already? Just five more minutes…”. Your bed is so snuggly and warm and the shock of merely poking your toe out from under the covers is more pain than anyone can bear on a chilly February morning. It’s early and it feels as if you haven’t slept at all (though you’ve had at least nine hours, ten on a good day). It’s mornings like that when I need more than a good breakfast and a heavy dose of caffeine to wake your bones and to say that your eyes feel like lead would be an understatement. (taken from http://cdn4.teen.com/wp-content/uploads/2014/11/Monsters-Inc-Bored-Sleepy.gif) Oh, the joys of fatigue and the added joy of hearing everyone say that they get that tired all the time too. For anyone that doesn’t actually have fatigue, but struggles more commonly against the common wave of tiredness that hits the vast majority of mankind, this is something difficult to ...

Happy new year everyone! Welcoming in 2016 has been a rather funny feeling, but I’m ready for a fresh year and it didn’t start half bad either. My birthday was on new year’s eve (and I reassure you, it is never the drunken, forgotten affair that a lot of people may expect from a new year’s birthday) and it was actually something which I would deem as a rare occurrence; it was a perfect day. A lot of people get excited about their birthdays and can’t wait and count down the days, but for me, especially more recently, it becomes a day of dread. I mean, it’s on the last day of the year when you’re reviewing what you’ve done with your life in the last 12 months anyways and on top of that, you’re a whole year older. This is my second birthday post diagnosis and it was an emotional day, but for really positive reasons. My sisters went all out to make the day happy, cheerful and they made me feel like it was a day to be celebrated. I love them so much and they really do keep me going. ...

I can't believe how soon the end of this year has approached us! So quickly and so much has happened personally as well as globally. Crazy talk! Well, I think it is safe to say that it has been a real year of mental progression and self-development. The year started as early months of heavy lows and true sadness for what I felt I had lost. At the time, it was hard to see past the new label that I felt trapped by and I was blinkered by MS as a disease. It felt like this new thing was out to destroy me, without permission and I had no choice but to surrender. Unless you've ever received news like this, that you have to cope with daily, knowing you can't change the fact it is permanent, you have no idea what it is to chew yourself up about it. I have been lucky enough to come into contact and befriend people in similar circumstances, that have to live with life-long conditions and they have inspired me, pushed me and motivated me endlessly and for that I am so grateful. To a...

12 months. A year. And how things can change in a heartbeat. We never think it is going to be us, but we just hear about others suffering and think “oh, that’s sad”, and just kind of carry on. I realise we can’t take everything on our shoulders and I’m not saying we should at all, but we don’t know what it is to be “normal” until things shift. It has taken me 12 months to re-establish what it means to be “normal” and the biggest realisation I had is that it is not this blanket term that we think encompasses the majority. Nor is it a template for us to all work around and mould ourselves into. The reality is, this kind of normality does not exist. But what does exist is what exists for us daily, in our personal experience. I’ve been working on finding my new kind of normal and a way of living that suits me. It’s not always easy and on a rough day, it can be hard not to be angry and draw comparisons to others, but we are all human and just because someone hasn’t got your problem, do...

I’ve been a bit slow off the mark with writing recently and for that I am apologetic. I’ve been out and about on many an adventure and when the opportunity occurs, I’m afraid I just drop everything else. That’s probably something I’ve been doing a lot more since the start off this year and I’m not so sure it is such a bad thing. Importantly, it is about jumping headfirst into life for the right reasons; doing it not out of fear, but out of a wish to savour the present. I will admit that initially, it may have been fear-driven – I had just been diagnosed and I had done enough sitting around in waiting rooms only focusing on pain and the churning feeling that things may never be the same again. Actually, thinking about it, I was right about one thing and that was that things would never be the same again. Is that such a bad thing? Well, I won’t pretend there were no cycles of loss and mourning for what I had lost (which was mostly certainty to be honest) and what I was preparing myself ...