Tag: lemtrada

Lemtrada: Round 2 Day 2

So yesterday was Round 2, Day 2 (aka R2D2)

Woke up after a good night’s sleep and made myself feel a bit more human with a quick shower after breakfast. Feeling a lot better this morning, with the headache finally subsiding and feeling a lot cooler.

Got off to a good start, being hooked up nice and early by 10 o clock.

Infusion mostly all went without a hitch – just had a little doze when I was having the saline flush at the end but woke up back in sweat mode and the rash was starting to make a bit of an appearance. A dose of piriton later and that seems to have subsided but I still feel damn itchy!

So for the most part, it was an uneventful day. Kat (my person that keeps it real does my nails and gives me all the offensive jokes) came to visit me with supplies. Because quite frankly this hospital food ain’t cutting it, as a you can see below…

But Kat the hero arrived with pringles and lindor which made it all better!

So really not much to report apart from I’ve managed to watch an entire season of Friends and finish a book that I’ve been taking ages to get through.

In summary, day 2 went as well as it could do and we’ll keep on powering on for my last day on Wednesday!

Lemtrada: Round 2 Day 1

Well yesterday, I was admitted to Salford Royal for day one of the second round of Lemtrada.

Once I’d managed to get on the ward which is a different one to last year and like Fort Knox, I was showed to my bed. Unlike last year, I’m on a general neurology ward, with a lot of long term patients. Dave was asked to leave until visiting hours at 2pm as it’s an all female ward and at that time of morning people are just getting up and being cleaned etc. So I was taken aback slightly as I thought I knew what to expect but that wasn’t meant to be!

If you’ve followed my whole Lemtrada journey so far, you may remember that last year I had no end of problems with my blood tests and cannula. My veins were pretty deep, the first attempt blew and I had a massive blood bruise on my arm, the first one that actually made it in wasn’t flushing properly. When my blood’s were taken the haemolised (clot) before they got to the lab for analysis so I needed more taken and I never actually ended up getting hooked up until about 5 ish.

Yesterday was far more successful. Alex was the man and got my cannula in first attempt and it’s in a really good, non-intrusive place too. It didn’t particularly hurt either so hopefully that fear is over!

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Waiting for lunch I had a catch-up on Sunday night’s Love Island and did my old favourite habit of binge watching Friends, despite the fact I have loads of other stuff I need to watch!

After lunch I finally got hooked up at 2 ish. Dave re-visited and appeared with salt and vinegar pringles and chocolate, because this, is what lunch was:

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Yes, you are looking at mash, carrots and a plain omlette. The veggie options here don’t leave much to be desired to say the VERY least. It went down, but only because I was so damn hungry!

The first part of the infusion was the steroids. I immediately reacted to this with a hint of a rash appearing along with a tight chest. That awful bitter taste like cheap bad tonic (the 39p stuff in plastic bottles!) re-appeared as if on cue within 10 minutes. Kat is a rockstar though and had bought me A LOT of mint tic tacs to take the edge off. Combined with the pringles it wasn’t so bad.

Like last year, I’m downing water like it’s going out of fashion, but my bladder fully behaved itself and my toilet trip count was down from last year’s 157 on day one to about 10 this year!

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Once you get put onto the Lemtrada infusion they observe you like crazy to start off. For the first two hours they check your temperature, heart rate and blood pressure every 30 minutes. Then you have one an hour later, one two hours later and final one four hours later. Because of the time that my infusions started, my last observation was a late one at 22.45, which I was pretty incoherent for as I was so damn tired!

During my infusion I felt awful. Achey hips, blinding head ache, so so hot (unberably so) and just wanted to sleep. At best you can only doze as you’re constantly being checked on and you’d be surprised just how much is going on around you.

Dinner time came before my final infusion had finished…Dave was highly amused by “orange juice” starter. Can’t understand why. It was a massive treat after drinking so much water! And now ladies and gentleman, I present to you my main course…

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Here, you are looking at saute potatoes, green peas and a cheesy pasty. Which doesn’t sound too bad, albeit a bit yellow. But the pasty wasn’t Carr’s or Galloway’s and quite frankly did not cut the mustard for this plastic Northerner!

Infusion finally finished about 8.30 and the relief to be detached from Bleepy McBleeperson was huge. A couple of hours after, I finally cooled down, my headache alleviated and I managed to have a snooze. I obviously woke up in time for Love Island and my favourite meal of the hospital day – TEA AND TOAST!!!

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Final observations for the day all turned out good (apart from my blood sugar, but I’m pretty sure that was the fault of the orange juice and tic tacs!)

My lovely Reiki friends sent me some healing throughout the day which I’m so so grateful for, and I finished off my day by “reiki-ing”myself to sleep.

I had a pretty good night and have woken up feeling pretty good this morning.

On we go!

Relapse or not?

The days you wake up, do a quick body scan and realise that you’re ‘you on your best day,” are truly joyous. The trouble is, it’s a precarious balance. Any minute it could come crashing down.

On your “best day” it’s not abnormal to get giddy about how much you can do and then push your luck just that bit too far. Like I did today. I usually do use my day off in the week to rest and recover but today ended up being busier than I like it to be. I had a couple of places I needed to visit as well as getting my bloods done. The urgency is in part down to being pretty busy this upcoming weekend, and partly knowing I’ll be in hospital 12 days from now. But now I’m paying for it. It’s 6.30 on a Wednesday night and I’m shattered!

I’ve been thinking a lot lately about the fact that I don’t think I’ve had any relapses since I’ve been diagnosed with MS. At least not a debilitating one. Yet I feel like I’ve been feeling progressively worse, physically. As my white blood cells still aren’t quite up to the bottom end of normal, I’ve been assured by a nurse that I can’t possible be having a relapse. So why do I feel so damn terrible?

This picture literally means nothing. It was just pretty and I needed one. And it’s a nerve.

It’s the aching more than anything. It just doesn’t seem to take a lot to make me feel like I’ve done a couple of rounds with Mike Tyson. And when I say “not a lot” in healthy person terms, it really is nothing. And I don’t know why. Sometimes I wonder if the brain really is so amazing that I DID feel this terrible prior to diagnosis, but in the absence of an explanation, or indeed in fear of it, I just suppressed anything I couldn’t explain.

It seems plausible that perhaps every way that I’m feeling terrible at the moment is something that I’ve experienced before, back when I was blissfully unaware that I was living with MS. But I found a different excuse that was temporary after it vanished. The reason everything is flaring up is that everyday my body is not only existing but it’s fighting off the symptoms and it’s fighting to build my immune system back up. That’s gotta be exhausting. Right?

I just feel like since Lemtrada, I haven’t been quite right. It’s not bad enough to put me off going for my second round. I keep trying to trust the process. That it’s a two year treatment that I’m only halfway through. It goes some way to appease me but then there’s this little niggling thought that there’s something more sinister going on.

I feel so confused that I’ve started to track my symptoms through an app called SymTrac. This doesn’t feel like something I want to use long term though. It’s making me think constantly about what pain I am and am not in. I’m all too aware of how I feel right now, and that’s not good for me.

Any other Lemmies out there with words for advice, reassurance or comfort? Or anyone in the know for that matter.

We go again…

Many followers to this blog may know that on 11th June it will be a year since I had the first round of Lemtrada. That time has flown. I honestly can’t believe it!

That means I must be due to head in for round two. And I can confirm that on Friday I got the call to tell me I’m due for my second round on 17th June. Nothing like a good bit of notice eh 😉

So two weeks from today, I’ll be packing my bag for this year’s treatment.

A quick reminder of last year’s treatment – I went through five days of infusion based medication. Three days with steroid and two days without. The drug wiped out the part of my immune system that attacks my nerves and causes the demyelination we know as MS.

Gonna be making friends with Bleepy McBleeperson again in the not too distant future…

This year, it differs slightly. I’m only in for three days for the same treatment. I’m not 100% sure if I get less of the drug or if I get more per infusion but I’m sure I’ll find out!

So a short, but sweet update!

It’s a weight off the shoulders. If you’ve read this blog from whilst I was being diagnosed you’ll know I’m a planner and totally hate the unknown or a lack of plan! It’s made me completely irritable and irrational. But hopefully I can start to see past this treatment now, and onto a life where MS is at the bottom of the list of things I think about. And not at the top.

A week in the life of an MSer – Wednesday

8am – Wake Up
A natural wake up this morning as no work. Just as well really as legs feel terrible. Not dragging myself out of bed in a hurry.

9am – Get Up!
Time to get up – I’ve got a Reiki appointment at the MS Therapy Centre at 11, but like to get in just before for a natter with some of the other attendees. I stick on a load of washing and grab some breakfast.

10.30am – MS Therapy Centre
As always, it’s a mad-house, even though it’s not too busy. After seeing a woman in her 80s with MS on the news last week who does it every week, the centre are planning a trip to the indoor sky diving near the Trafford Centre in Manchester. I get my name on the list – seems like fun and boldly tell Pete (the chairman) I’d be up for doing a charity sky dive for the centre. My Reiki Master, Nicola is the therapist at the centre and she gave me my certificate for passing my 2nd degree attunement course. I’m now qualified as a Reiki practitioner! Then I head in for my therapy with her.

Midday – Reiki done!
Although I can give myself Reiki, it’s never quite the same as it is as receiving the therapy off someone else, so I like to go and receive one every couple of weeks. It keeps me well balanced when I’m giving a lot of energy healing to others. The weirdest thing happened today. I always know when Nicola has picked up on something as there’s something in the way she asks me how I am. I told her I have no idea what happened but it was so weird right at the end. We think I might have attempted to leave my body – she literally sensed it and I felt a whoosh down out the bottom of my feet. It’s not really the kind of thing you can put into words. She said overall things felt very peaceful though which is a good way to describe how I feel at the moment. My therapy leaves me feeling relaxed but energised.

12.30 – Back out
This Wednesday I’m definitely a lot busier than I usually am – I try to relax a lot more but as I’m not feeling bad from a fatigue point of view, I’m taking advantage of it! My work BFF who left last week has picked me up for us to go out for a meal. It was so nice to catch up even though she’s only be gone a week!

4pm – Home
I spend about half an hour chilling out before heading over to Dave’s. I feel ok, but my legs are still feeling a bit “off”.

5pm – Dave’s
I get to Dave’s and am welcomed in the warmest way from Pops! I get straight in my pyjamas and into bed!

6pm – Poppy cuddles and TV catch up
On the couch with Pops and catching up on the soaps (yes, yes. I know! I love Corrie though!) We don’t really move. Dave has a nap and I read a bit of my book between episodes. The whole evening is just quite chilled, and also very lazy!

10pm – Bed
Head to bed so I can get half an hour of reading in before I go to sleep. I’ll be up a little earlier tomorrow as I’m going to work from Dave’s and he lives a bit further away.

11pm – Sweats
I’m getting on top of the covers this evening. It’s one of those nights where my body temperature just doesn’t want to drop. I’ll get in at some point on the night when I finally cool down!

A week in the life of an MSer – Tuesday

6.50 – Wake up
Really don’t want to get up today! I knew I’d pay for last night’s outing but I’m off work tomorrow so that’ll get me through the day! I do my usual body scan to see what’s hurting and what’s not. There’s a little twinge in my ankle but I think after I’ve walked about a bit it should be ok!

7.45 – Arrive at work
I’m on my own for most of today, so hopefully I’ll be reasonably busy to keep me occupied and symptoms at bay!

10.30 – Ankle
This flipping ankle of mine has flared up again. Oddly, it’s actually better in shoes with a small wedge, but I’m in flat shoes today.

1.00pm – Dinner
I have a flick through Facebook on dinner. When I first got diagnosed with MS I joined loads of groups then proceeded to leave them all. I’ve rejoined one called MS-UK though and it’s really good. It’s a great place to check in about random symptoms and knowing if that’s MS or not. Today I’ve learned that my having a constant need to itch it totally related to MS!

6.00pm – Out of Office
That’s me done until Thursday now, so out of office is on and I switch off the alarms on my phone at the same time, otherwise I’ll be getting woken up dead early.

6.30pm – Home
I’m knackered and I strongly debate getting a take away. I really cannot be bothered to cook. I end up making a one pan rice thing though. There’s enough for three days too so I won’t have to worry about cooking for a couple of days.

7pm – Mail
I’ve come home to not one letter from the hospital today but five! The first one is to cancel my next nurse appointment, the second is to give me my blood forms for my next blood test, another two are more appointments and the last is from my consultant summarising my annual check up last week. All was well and no major concerns. My 25 metre walk took six seconds longer but I don’t think that’s a concern. Last year I tried really hard feeling like I had something to prove so I probably almost sprinted! He’s also recommended I increase my Vitamin D to 5000iu a day. To put that in a bit of perspective, the High Dosage off the shelf Vitamin D tablets are about 1000iu.

8.30pm – Bath
The weather has been cold and horrible today. When I get that cold, I struggle to warm up and that’s when the twinges and cramps in my legs start. The reality is, I’m pretty lucky – I can move about like normal (with the occasional hobble) and apart from my ankle, the worst it is is discomfort – not real debilitating pain.

10pm – After Life
In bed and finishing After Life – the new Ricky Gervais series on Netflix. Definitely watch it! It’s brilliant. Whilst watching, I give my legs some Reiki in the hope it’ll ease some of the cramping and restlessness.

11pm – Lights out
Time to go to sleep. Today’s not been a bad day in terms of fatigue – just slight dull aches and discomfort in my body.

A week in the life of an MSer – Monday

As March is MS awareness month, I thought I’d write a series on a week in the life of an MSer. I’ll write everyday but I might not get them posted everyday but I’ll do my best!

Enjoy!

6.40am Wake Up
Although I feel groggy, there’s no aches this morning which is a relief as my ankle has been giving me quite a bit of hassle over the last few weeks.

8.02am – Arrive at work
Get into work and log on. Catch up with a couple of colleagues about how my weekend was. We just slept a lot this weekend which was much needed!

9.30am – Toilet Trip
Luckily I’m like clockwork in the toilet department. Because of certain nerves that are damaged, I don’t usually realise I need to go for a number two until it’s VERY short notice 🙈

11am – I need something to do
I’ve run out of stuff to do. And this is when my fatigue really sets in. Even though I’ve slept all weekend I’m feeling tired. Fatigue always gets worse when I haven’t got stuff to distract me from it.

Midday – Found stuff to do
I’ve managed to find something to keep me occupied and I’m feeling better for it. It’s a bit early for dinner though. I work longer days so although colleagues are going for lunch, I’ll probably leave it another hour or so

1pm – Lunch
I take my lunch on my own – the time on my own helps me recharge my batteries. I tend to switch off with a book for half an hour. I never used to take my dinner and I was really struggling with fatigue. So I’m now trying to behave myself and actually take my dinner break!

4.30pm – Final Stretch
I always used to have finished work by now, but I’ve changed my shift pattern this year. I now work four longer days with a Wednesday off. It’s really working for me, having that rest in the middle

6pm – Finished!
Today has been a good day but it’s not done yet. This evening I’m heading over to an Essential Oil and Chakra course. I’ll grab food on the go.

9.30pm – Finally home
It’s been a really long day so I’m straight in my pyjamas with my feet up catching up on MasterChef! I’m starting to feel the tingling a bit more prominent in my feet and have a bit of restless legs. This is totally normal when I’ve been really busy all day. No pain though. I’ll also take 4000iu of Vitamin D.

10.40pm – Sleep meditation
My “sunrise/sunset” alarm clock goes off at 10.45pm so it’s time for a quick 5 minute meditation which I can guarantee will send me to sleep!