Day two: Sleep is overrated anyway.

Now on day two yeah! Had the 30 mins of steroids plus some oral tablets, and then the delightful Lemtrada for 4 hours. The morning was fine. Just a mild headache and fatigue. The afternoon was also good. No rash as yet. Plain sailing!

How was last night I hear you ask... Had some more codine because of headache that wouldn't shift. Had a really dry mouth all night, despite drinking gallons of water. Didn't sleep well because of the steroids, random leg twitching and usual hospital noise. Today I'm going to beg for the sleeping tablet as the tiredness is really affecting my legs. Also sent Mr W on a mission to find me an eye mask. He did good! I will sleep god damn it!!

And no, my bowels haven't "opened" today yet 😂

All in all, feeling very positive 😊

Day one: Hello Lemtrada. I love you.

So it's 3.30pm on my first day of Lemtrada and the good stuff has just started to be pumped through my veins. I feel so elated. I can't express just how relieved/excited/grateful I feel right now :)

How was my day? So far so good. Arrived at 830am and went straight to my bed. Within no time I'd had a urine test and blood taken. I say within no time.... oh god the cannula. The only thing I'd been dreading. My veins are naff, really naff. I've had needles in the tops of my feet when I had a c section. That was bad. Luckily the doctor did it and it was painless. Cannula done in seconds. I've got it in my left arm, on the inside where the bend is. What do you call that area? Inner elbow?

Then there was a bit of a wait whilst bloods were tested. Took about an hour and then the package of joy was ordered. I had some tablets (piriton, antiviral and something else, I can't remember) and then some more waiting. Hurrah my steroids arrived (30 mins through cannula), then some more piriton through cannula(few mins) and then the amber nectar. Oh how I want to kiss you! Four hours of liquid bliss... tick tock... Then wham bam!!! Felt like I'd been hit with flu. Headache, limb ache, trembling and tight chest. All managed with medication and some oxygen. Nothing to worry about 👍 am back to my normal self 😊 very hungry,  but that is my normal self. Hoping for a good sleep. Going to ask about sleeping tablet I think 😴

Few tips:
- get those mints and fruity sweets ready. After ten minutes of steroids, I got "the taste"
- bring food and plenty of it. Thumbs down for hospital food.
- drink loads of water. Only doing this because other folk tell me to!
- don't be afraid to ask the nurse for painkillers, and use the word "severe" if you need to

I will update again tomorrow. Fingers crossed for an easy night.

Good luck Mr W who is in sole charge of the babas. Remember they are 4, you are 41 x x love and kisses for you and the babas x x x

Lemtrada Eve....

Twas the Night before Lemtrada

Twas the night before Lemtrada, when all through the house
Not a creature was stirring, not even a mouse.
The hospital bags were packed with care,
In hopes that the infusion soon would be there.

Very excited now. All weekend I've been dreading the phone ringing in case it's the hospital cancelling because of a bed shortage. Just hope I can sleep tonight!

I'm stocked up on fruit sweets and mints ready for the taste the steroids apparently leave. Evian to keep me hydrated. Eurax cream for the itchy rash. Diet coke because I can't live without it. Something chocolatey, because I like it. Some new £6 trackies from good old asda for my "comfortable day clothes". Pretty much sorted 👍

Now the downside... not seeing my little family each night 😔 

Fingers crossed for a positive start tomorrow!!

Three days to go... Lemtrada, I hear you!

I'm struggling today. Didn't sleep well last night and the consequences of that are a lot of leg/back pain, struggling to walk and feel like I could sleep for a year 😴 I am just so grateful that I am only three days away from the good stuff! It's days like this that make me so thankful there are drugs out there to slow down progression. I seem to be getting slightly worse each day that goes by.

On the positive, Mr W took me out for a pre-birthday lunch which was very nice. My two little cherubs came out of pre-school with lots of "presents" that they had made for me. I swear the teachers there mustn't need to put any cardboard out for recycling in their bins. I was presented with various perfume/egg/medicine/tissue boxes with goggly eyes stuck on them and some scribble. Beautiful. Thanks my little kiddywinkles 😘😘

I'm throwing loads of water down my neck to make my veins nice and juicy for Monday. Oh how I hate needles. Needles and dentists. Awful. I once went in to hospital for an operation on my leg. They did the usual blood test when I arrived. I passed out from the blood test and woke up thinking the operation was over. But no. And they hadn't even managed to take any blood. I never understand why they need to take so much blood. Surely a little pin prick would suffice?? Please?!

Four days to go...

I still haven't come down with the cold that everyone else has 👍 and I'm getting more excited about the treatment on Monday. Need to get my backside in gear and start to think about what I need to take... How windy has it been today?!

I've not really talked about my condition, so here we go.... the highlights...
- Oct 2015 extremely exhausted, couldn't think straight, started to forget words. Put it down to a stressful job and having 2 year old twins.
- Jan 2016 numbness in my left foot which spread up my leg and up my side. Had blood tests and back x ray. All clear so referred to neurologist. Decided to pay private as nhs waiting list was so long, who arranged for mri.
- April/May 2016 mri showed lesions. Now had numbness from left toes up to left eyebrow. Vision on left eye was very "patchy" and colours looked different. Legs felt very heavy when walking.
- Summer 2016 had lumbar puncture and some electric eye test thing (can't remember proper name). Saw registrar who confirmed I had optic neuritis in both eyes and the lumbar puncture results supported diagnosis of RRMS. By now, my right side from my toes had gone numb up to my arm pit. Walking was getting difficult.
This led on to blood tests in preparation for lemtrada.

So here I am now. Still got numbness in both sides, severe fatigue, can't walk very well without holding on to husbands arm, seem to be able to fall over thin air, poor concentration, poor memory, can't stand without discomfort, very tense and painful back, painful legs and sides at night, really stiff and in pain when I first get up in a morning... it's all fun and games 😊 and 36 in 3 days 😱

One the plus side, it's nearly wine o'clock 🍷

Five days to go...

I seem to be avoiding the cold that's been working it's way through the household. Mr W started with it first, then the boy and now the girl is just getting over it. This made me realise I haven't had a cold or flu for months. Is it to do with the high dose vitamin d I've been taking on my neuro's advice? There are rumblings out there that it can be more effective than the flu jab.... I just hope I keep avoiding it so I can get that juicy lemtrada. Fingers crossed!!

Spoke to my MS nurse today. Lovely bloke. Very helpful. I wanted to know if there's anything I should be doing before Monday. Not much really! Just avoid uncooked food, keep hydrated and don't go on a bender the night before.... it's my birthday on Sunday. I'll have to cancel painting the town red. If only! No painting anything with this fatigue and numbness and blah blah.

So I will celebrate my birthday on Saturday. No pressure Mr W, but I want to do something nice on Friday whilst the kids are in preschool and I want a birthday cake...

Six days to go...

What a great day for information! Got to love Facebook. I've joined and been welcomed in to a fantastic group for Lemtrada UK and Ireland. I urge anyone considering/having/had the treatment to join.

****disclaimer****
I am no medical expert so please do not follow my lead!

They have taught me that you can drink after treatment, you just get drunk a lot quicker..... yes! Fewer calories!

You can move around inbetween observations. Hello the onsite M&S food hall.

You sleep like a baby thanks to sleeping tablets. This I cannot wait for. Anyone with young children will appreciate my excitement. Babas, I love you and will miss you for the five days I'm in hospital, but hello full nights sleep with not having to keep and ear out.

What more do you need to know?

1 week to go...

So, here we go! All being well, this time next week I should have had my first glug of Lemtrada. I say "glug" because I'm fancying a glass of wine right now so I've just sent Mr W out to get some. Which reminds me, I need to find out if you can drink wine once the treatment is complete.....

Overall I am very excited to be getting lemtrada next week. I was diagnosed with highly active relapsing-remitting MS in August 2016 and it has certainly taken its toll on me. I look forward to knowing that I have had some treatment that will slow down the progression of this disease and reduce my relapses. Bring it on.

Mr W has just poured me a glass. Watch this space if you want to find out how it all goes! Fingers crossed the current dire state of the NHS doesn't mean there isn't any funding for my treatment, or the neurology department don't lose my bed!!