Trail Of Light.

When I got the letter through the door, it struck me how once this very small intrusion would have made my heart stop. I would probably feel sick, be filled with trepidation and probably just let my mum open it. Then that would cushion the blow. Nearly 7 years post-diagnosis, I'm a little calmer about those formal envelopes that follow me into my home a few times a year, taking the approach that there's nothing to deal with until the letter is completely read. On the letter; after another annual MRI, 3 years after my infusion treatment (Lemtrada), there's been no worsening in my lesions and no new ones. And I just thank God. The optimist in me wants to jump up and down, and bounce off the ceiling cheering. The realist in me tells me this was really lucky and it's a miracle and this will change one day, that this is temporary. I'm working to sit somewhere between these two voices; being grateful and working to keep myself well. Stress levels are the main reason I was...

Hello! It has been quite some time and I supposed a got a little kick in the backside from my mum who was asking the other day what had happened to my blog and if I had deleted it. After that call, I’ve been having a real think about why started this blog in the first place, and ultimately what I was trying to do was document a journey that fellow MS warriors could follow to see what another person’s medical and personal journey looked like. I’ve been writing for the MS Society which has been a great chance to connect with the community, but I have found myself slipping away from my own blog. When I started writing, I wanted to make sure that those who were newly diagnosed could hear frankly what a real experience looked like, but also walk through my mental processes as I worked through it myself. It isn’t all doom and gloom as it was told to me 5 years ago (and still can be I may add) but it is about learning the patterns of your body, utilising some handy tips and trick alon...

A 4am post that won't be posted until a lot later but good morning! And what an interesting day the last day of Lemtrada was. In my experience of what having the infusion was like last year, I'd say this time round (so far) it has not been as draining as the five day round I sat through previously.  The extra two days really took it out of me last summer, and whilst I'm not exactly bouncing off the walls, I'd say there's a bit more about me and I'm still strong enough to give sass to anyone who prevents me from satisfying a steroid-induced starvation pang. That's killer by the way, I could haven even eaten my own arm before lunch arrived yesterday and my lord has hospital food never tasted so heavenly.  We got there. I mean, I look a bit like a have hives for periods of the day and slightly vacant, but this has been worth it and inshallah the long term will be the proof of that if I maintain a healthy life style that optimises the best this treatmen...

This is really short one as I feel really shattered after a 45 minute cannula ordeal that was literally so unnecessary and distressing. It has left me feeling really exhausted and it shook up a massive nervous reaction. I am otherwise really fine, the Lemtrada response itself was Alhamdulilah, as good as it could have been and I've seen signs of the rash and hoping to see more tomorrow so I know I my body is responding positively to it. I am ever grateful, and fortunate, but for today these are all the words I have. Keep me in your prayers and thoughts and find light in every space you can. Here's a poem I wrote that sums things up and I hope tomorrow my words will be full of more zest and greater strength inshallah: بردو قلبي And tell me something that washes over me Like ice water and a sea breeze Enough to take edge off the now And bring the light back to my eyes Cool the burning in my veins And loosen the knots in my lashes. Heal these ...

Finally, the sun has decided to make an appearance and, how beautiful it looks as it lights up everything around us. Everything is full of just a little bit more colour, things seem brighter and the warmth is exactly what most of us have been waiting for. Summer is absolutely my favourite season, but I’ve learnt over the last couple of years, what precautions I need to take to make sure that I am functioning as best as I can through the heat and direct sunlight. After having my  parathyroidectomy  last month,  I’ve  thankfully made a full recovery which means I can now focus on raising the vitamin  D  levels in my system. Most of us in the UK suffer with a vitamin D deficiency, thank s  to our Great British weather (not so great most of the time).  But now  we  have hope of a few days of  sun, it’s the time to get out there, slap on the SPF and soak those rays in. Sunlight is one of the easiest ways to obtain this crucial vitam...

Here's a little update on how things are going and overall I'd say they are going a lot better than I anticipated. I woke up after the operation on Friday feeling pretty positive; the consultant had found what needed removing pretty quickly and didn't need to open up the left side of my throat to go hunting any further for another parathyroid gland. I was out, operated on and awake again within 90 minutes. The anesthetic was a total Godsend and I didn't realise quite how much pain it was keeping at bay until last night. I'd say that was a bit of a shock to the system and along with incredibly persistent nausea and drowsiness, yesterday and last night were very rough for me. I'm trying to keep optimistic and busy (when I'm not falling asleep into my cups of tea). So far, the relapse symptoms have left me alone! There was a little tingling in my hands after taking some Oramorph (that wasn't as much fun as I had anticipated) but other than that, nothing ...

Hello! How  I’ve  missed writing and how crazy this last month has been. So much has been happening globally, as well as personally.  I’m  not going to go there with the politics but all I’ll say is love and peace to all. On a personal level,  I’d  say it’s been a lot of juggling and coasting but hopefully things will calm down soon (well, because they are going to have to). Where to start…firstly,  I’ve  spent time with my friends prepping for our other friend’s wedding. She may be on her honeymoon/just got back home as she reads this, and if  that’s the case, a big HELLO to you and I hope you had the best time ever. This was a lot of fun and loads of time and effort went into making the day  absolutely spectacular . I think I speak for us all when I say, well done team and it was all worth it. From there, it has pushed me into my own wedding planning  and that has been  hectic, though I think  I’ m  doing wel...

New Year, new you? Happy new year and I hope the holidays were somewhat restful and fun. If they weren’t, I hope the start of this year is better and you find strength to keep going. So, I’m going to cut straight to the chase with all this new year’s resolution malarkey; I don’t believe in it. What I do believe in is making change whenever you want because, well, you can if you really want to. I guess starting at the beginning of a year is symbolic and that can be the driving factor for a lot of us to review where we are and decide where to progress. But, it’s when everyone’s gym regimes and sugar-free months flake half way through the greyness of January that we start a cycle of negative self-talk and reinforce this notion that we are completely and utterly useless. Is that the case because we failed to keep a promise to ourselves in January? Well, no. Does it mean we cannot develop ourselves and are complete failures and good-for-nothing? It would be a real disse...

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...

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 ...