Month: Jun 2018

Alarm clocks are overrated anyway!

Day 2 started for me at 4.53 am. Or at least that’s when I chose to wake up!

Which I can’t really grumble about since I dropped off at about 11 ish. In a strange bed, sweating like mad with Christ knows what pumping through my system, 6 hours is a good enough achievement for me!

I woke up at around 2 am with my cannulated arm in some serious pain, but just think it was the position of it. I hadn’t kept my arm particularly straight so bending it, right at the point of cannulation wasn’t doing me any favours. A change of its resting place seemed to sort it right out though.

I saw the early rise an opportunity to take advantage of the time difference and spent some time texting my sister who’s in New Zealand. Before I knew it, it was 6.15 and I was ready to drop off again. Unfortunately the night nurse had other ideas and appeared at my bed to give me the greatest wake up call of all time. A blood sugar test which basically feels like you’ve stapled your finger to the table! Never mind. Alarm clocks are for losers anyway.

I text Dave at roughly 9 am after I’d showered, got dressed and eaten breakfast. I didn’t get a response but he did walk through the door at 10am which was a nice surprise.

He’ll claim he’s sick of selfies but really he was upset after being told that he’s an infection risk, and to get off my bed.!

The rest of the day has passed in a bit of a boring blur to be honest. My second lot of tablets made my blood pressure drop so I went really faint. I eventually started infusion at 2pm. The delay happened as I needed to wait 22 hours before I could go again.

Half way point!

I had a face time with mum and dad a little earlier on which was nice. (Mum was showing off her desperado, whilst I was still ploughing through my mammoth effort of water. I’ve got through almost 4 litres today plus a couple of glasses of orange juice and a coffee. On the plus side, toilet trips are at about 87 now so that’s a definite improvement!)

I’m feeling mostly good though except tiredness has hit but can’t drop off yet as I still have another couple of hours of observations to go. My temperature has just started to spike in the last half hour too so they’re keeping a close eye on me.

All in all, a boring day. But as my mum always says, “boring’s good!”

1 year on.

10th June 2017. Somewhere between 9am and 10am on a dreary Saturday morning at Poppy’s play date, I thought I’d got some rain water stuck behind my contact lens.

I gave it a little wiggle. Nothing changed. Maybe I’d smeared some foundation on the lens in my haste to get ready. It wouldn’t be the first time.

That didn’t fix it either though.

A week later, 17th June, I was in hysterics, fearing the worst and desperately trying to get an appointment at Specsavers to see an optician. I still managed to squeeze in a selfie in between the tears of me modelling the “four eyes” look, as featured below!

That was what got me to here. On a Sunday evening exactly one year later, waiting to go into hospital in the morning.

This evening, I’m feeling nervous. I’m not scared but I’m well aware that I have chosen to have my immune system wiped out. I’m starting to feel the anticipation bubbling away inside of me.

Having reflected on the last year, what can I tell you?

I’m no longer scared of needles and blood tests, of which I know they’ll be many from tomorrow. I take CBD oil, which having grown up as VERY anti-drug was something I never thought I’d do. I blog. I put myself first. I don’t obsessively diet. I’m no where near as focussed on career progression. I try and live in the “now” more. I’ve got lots of new friends. I have MS.

Doesn’t a lot change in a year?

5 more sleeps.

Less than a week to go!

It’s gone so quickly. Hopefully this time next week Day 3 will be complete.

I think I’ve got everything on my “hospital packing” list now, so I’m ready! I had to make sure I had some respectable pyjamas – you honestly don’t realise how much of a slob you are until you need clothes to go into hospital 😂

I’ve been warned about this vile rash that you get as a reaction to the infusion on Day 3 or 4 so I’m loaded up on Eurax cream and Aloe Vera gel. 1 in 10 manage to avoid it, but I’m not counting on me being one of the lucky ones! I’ve had warnings of offensive tastes from the steroids too so I’ve stocked up on mint imperials. I also succumbed to ordering a Love Island water bottle too- hopefully it’ll arrive before I go in. If I’ve got to drink about 10 gallons of water a day, I might as well make it sassy!

This week when asked about how I feel, I’ve answered that I’m just looking forward to a really long break from work and a lot of sleeping. Dave’s fuming – he thinks it’s a huge waste that I’ve been signed off work for the duration of the World Cup as I’m really not a football lover. I can’t even find it in me to be slightly patriotic towards my country. Not a fan.

Yesterday I thought I was going in to see Danny, so I was armed with a tonne of questions. Turns out I was just getting some pre-Lemtrada blood tests. I dunno what they were for exactly but as usual, they took loads.

Having caught up with Danny today I’m feeling really reassured now. He said he’ll pop in to see me next week, so I know I’ll be getting at least one visitor.

As it turns out, they’re really flexible on visitors which is good. I’ve told Kat and Steph to come on Thursday so that they can laugh when the sexy rash appears!

I’ve got more of an idea of what Day One holds now. On Monday, I need to be at Salford Royal for 8 am. They’ll start off with some blood tests and a urine sample followed by sending me off to the cafe for an hour as they wait for the results to come back. Then providing they’re all ok, they’ll request the lab to mix the Lemtrada and then I’ll be hooked up to an hour of intravenous steroids before they move onto the Lemtrada. I’m bracing myself for a LONG day.

In the meantime, I’ve got a nice a weekend planned with a Poppy play date on Sunday and Dave and I are going to an Evening with Eddie Hall Saturday night.

The next time I blog, Day One will probably be done! Eeeekkk!

Me and my Girls! We went out for Pre Hospital cake on Sunday 😊
Said cake.