Trail Of Light.

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...

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...