Trail Of Light.

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 vitamin and, keeping levels in check is particularly import

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 well for time . With  a lot of  bookings made, hours spent on phone call