Trail Of Light.

I think I am going to just take the time to write a little about appreciation this post. I’ve been wearing down a little thin more recently, with patience waning and my temper becoming shorter and shorter (almost shorter than these wintery days). I feel like a lot of things are getting to me and though I have come to terms with the fact the life is fundamentally unfair, I can’t say that there aren’t frequent irritations that occur, as they do for us all. Politics has been a bit of a drag recently and has caused a huge amount of suppressed bile to rise from the sewers (that was a great metaphor, well done me -> self-compassion during angry feelings, gold star). There has been a lot of hate around, a lot of fear, words spoken out of turn and actions that are much worse than that. So now, more than ever is a time for appreciation. It is a wonderful happening that we are all so different, that we view things in different ways and can have such a huge impact on the world aroun

Hi everyone! It's been a little while so I thought I'd check in and give you an update...from my sickbed. BUT not Lemtrada related, I promise. Actually, I think so far that's actually been going brilliantly. The most noticeable difference would be the change in frequency of experiencing fatigue. I'd say the intensity and how often it happens has really improved (fingers crossed), though as the days grow shorter, I do become sleepier sooner, but that's still pretty good for me so I'll take it. I've caught a bit of a cold as of late and a tummy bug, but I think that is just what's going round and as I work at a school, it wouldn't be unheard of. Loads of germs flying around will eventually equate to some suffering, but I genuinely wouldn't put that down to Lemtrada. What I will say is that with a rising temperature or a really rough episode during catching a bug, I have felt incredibly weak and like I have been on the brink of relapse. So fa

It's been two weeks since I came out of treatment after having five days of Lemtrada. So, how do I feel? What have I been up to? I'll tell you. I would say that the for the first week after the treatment, I was a bit touch and go and playing things by ear. Most nights I would wake up with a headache and felt like I had been to a party that I, unfortunately, had no recollection of. I would wake up with what most would describe as a hangover, but without the good time, in-jokes or banterous tales to tell. What the infusion nurses had warned me of (but consultant had thought unnecessary to mention...??!) was that I may experience an exacerbation of previous relapse symptoms I may have suffered previously. For me, this meant deep pains in my back and neck, but do you know what, I'll take that over a completely new relapse or further damage. Practicing mindful meditations for pain leading up to treatment meant that I could put what I had learnt to the test, finding a self-co

So, hi guys. It is me having risen from 12 hours of sleep (post 2 hours nap). I was intending to blog yesterday after I finished the last of Lem but I was too tired. I mean, in my bones, shaky eyeballs tired. I'm still tired today but feeling more human and I'll take the tiredness over the rash and nausea any day. I would say over all that I've coped better than I anticipated and I will take a moment to pat myself on the back here. I didn't even cry when I wanted to throw up my guts as the lovely nurse had to repuncture a bruise to get into my non-cooperative veins. My arms do officially look like battered peaches and weigh as much as lead but on the plus side, this treatment could change my life. Aaahh it almost seems crazy optimistic to say this out loud, but it really could!  I'd like to take a minute to gush about the company I was in for about an hour or so of my treatment yesterday. These heroes come in monthly for their Tysabri infusions and are just

Day 4: ooooh this is a rougher ride today but I'll take it because it's taken 4 days to show rather than on day 1. I woke up this morning with a raging, blistery rash. I've never seen anything like it, but apparently that means it's working. Once I got to Southampton, they gave me some anti-histamine which brought it down a little. The joys of three hours on the clock. Reading a good book definitely helped to pass the time. But today, it wasn't going to sidle off unnoticed and behave. It began to rage again a few hours later and I had to really wait without scratching myself into ribbons. To say I was on fire would be an understatement and it has required real self-control not to paw away at myself. No, I was not thrown into a nettle bush and no, this will not feature in high street fashion next season. It was a shorter session without the steroids, but I didn't realise quite how much they were doing for me. On completing treatme

Hello,  I know it's been a little while. Truthfully I've kind of been distracting myself from anything MS related because I've been so nervous about coming on Lemtrada. I'm on day 3 now and I'm really tired so I'll keep it short and sweet and give you a little update. My nerves were really getting the better of me this time last week. I was feeling sick with trepidation and just thinking "God, what if this is the worst thing you could be walking into". Well, how are any of us supposed to know, unless we just do it and who said it would it be?  I didn't think I would smile this week. But I've smiled and actually my spirits have been really high. I've had lovely people checking in on me, my mum and sister by my side throughout the infusion and, I would say (touch woodp) minimal discomfort, minus my dislike of cannulas. The days have been long. With an 830am start at the hospital after a 45 minute drive to the hospital, it's an ear

Finally, the sun has appeared and this seems to be having a real impact on my mood. I feel a lot more upbeat, though I’m still fighting the fatigue, but God it is so much easier to do this when it is so beautiful outside. I’m finding every opportunity to go outside, walk and surround myself in green and I hope that this sun will hold out during my treatment as I think it’ll really help keep me going. I am SO going to rope everyone into taking me on walks (albeit potentially short ones) and keep me entertained. My sisters are taking some time out to keep me busy during my Lemtrada treatment (I’ve heard it can take anything between 6-8 hours depending on your tolerance) and I believe my fiancé may be coming down to keep me company and grace me with his deadpan sarcasm and pedantic  banter (love you really. Joking. Not joking heehee). It’s really cool that my family are going to be hanging out with me and from a psychological angle, it’s going to make me feel so much better in myself, th

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 parts of your immune system and forces it to reboot, so hop

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 comp

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.