Super team for super drugs

Its was a post bank holiday Tysabri day!

I’m so impressed with the team today on Day Case Unit ward 43!

Because yesterday was a Bank Holiday here in the UK, everyone that is due Tysabri on that day gets changed to the next day. We have to fit in around everyone else that also has medication the day after we would normally have ours. And its done extremely well!

No one complains, its a full room, even with the Monday crew. But it just gets done! I think its lucky that the Monday people like to arrive really early, and generally as a rule, we tend to be finished not longer after Tuesday’s patients arrive!

MS nurses going that extra mile!

Today, was exceptional though! Not just the 2 wonderful nurses – Dianna & Faye – we normally see on the ward working today. No, today we had two wonderful MS nurses chipping in as well – Jeanette & Michelle! One of them being still reasonably new – Michelle (to me anyway, I think it may have been my 4th or 5th time seeing her)

It was Michelle that had phoned me last Friday, this was the nurse who was so insistent on me starting the steroids! The nurse who, miraculously managed to talk me into taking the steroids! Remember, this is the drug that I have written on all my medical notes ‘NEVER AGAIN!’ But in my heart of hearts, I know how important this drug is! Even if it makes me feel poorly, I wouldn’t be prescribed it if it wasn’t completely necessary! And lets be honest, there’s worse drugs out there!

How many tablets!?

Today was a great chance to talk with Michelle, with the nurse that actually managed to get me to see sense when it came to taking Steroids!

Luckily, Steph wasn’t to far away, to make sure I was asking the correct questions & to be my memory, for the answers I needed!

When we told Michelle about the amount of tablets the pharmacy wanted to dispense me, the look on her face! “Nooooooo!” “5 tablets for 5 days!” She said!

Oh thank goodness for that!

She thinks they may have gotten confused with the Omeprazole dosage (the medicine that protects the lining of the stomach while taking Steroids) this is to be taken for 7 days, 2 days after the Steroids have been finished!

Bless her, she printed out an information sheet as a reminder!

I don’t know how many times I’ve seen this, but it was great to see! The thought of high dose Steroids for another 2 days was not a good one!

A well needed drink after my 100th Tysabri!

I don’t think I’ve ever been out from my Tysabri treatment so quickly! Team work was definitely in play!

Day 4/7 Steroids for possible MS relapse

20 tablets down, 15 to collect today! Another 3 days left!

Oh please, let there be a miss calculation somewhere!

I’m sure its only normally 5 tablets all together in the morning for 5 days!

Chakra healing meditation

If anyone has ever thought about meditating but unsure where to begin….

A great way to start is with ‘guided meditation’ This is a brilliant way for me to meditate, it keeps me connected, especially when I’m feeling as tired as I am while on Steroids!

A brilliant app that I use is called ‘insight timer’ which is where I had this mornings meditation from.

Its a free app, in app purchases can be made for ‘classes’ which are fantastic, or you can just still to using it for free, which is what I tend to do.

So, I’m meditated, medicated & ready for Steph to pick me up!

Tysabri infusion number 100! Bring it on! And then an afternoon of sleep!

Failed by National Health Service

​Reminder to myself and every other person who like me suffers from mental illness! 

This week I had my monthly Tysabri infusion, not the nicest of things to have to go through but because we are warriors, everyone of us does our best to make it a light hearted day.

This month was the worst each of us in the group has ever experienced though! 

I will be sharing what happened at the hospital on my blog as soon as I have got my head around it. 

To say that we go to hospitals fir treatment and put all our faith in the staff there, the drs, nurses and others, to look after us. 

But what do you do if the system fails you!? What if someone’s bad day becomes your problem because they couldn’t handle it quietly to themselves. 

What if the man inserting the cannula into your veins doesn’t back off when you ask him to because on the 9th attempt he still hadn’t done it.

What if you can’t cope with all of this because of things that have happened in your past.

What if all of this exasperates your MS.
What do you do then?

Meme shared via Pinterest

Tysabri (natalizumab)

​Monday already and the alarm is set to wake me up in less than five hours! 

Its been four weeks since my last infusion so that can only mean one thing… Time for some more of the good stuff when daylight breaks! 
This is my super juice! My drug not so much of choice because, come on, really who chooses to pump chemicals like this through their veins without getting a ‘high’ afterwards! 

Actually, thinking about it, yes, I choose! I choose this over monthly relapses, over loosing my vision, over being wheelchair bound! 

And there is a high, eventually, after the initial feeling like crap! The high is in the knowing that I have been relapse free and steroid free for a whole year now! Knowing that the relapse I know i had last year was minimal in comparison to before I was put on to Tysabri! 
So heres to you NHS! I salute you for the service you provide for me & my MS family and anyone else that calls upon you! 

Eternally grateful, me!

Image shared via pintetest

Post Tysabri

My ‘after’ photo! ‘After’ my visit to the hospital for my monthly MS medication top up!

and ‘After’ sleeping the ‘after’noon away, because it really is extremely tiring for me during my medication infusion (basically sitting with a drip next to me with the medication being pumped straight into a vein!) 
Give me a couple of days & I’ll be back to me’ 😊😜

*Taken on my iPhone, no filter, no makeup! Just me!*

*Taken on my iPhone, no filter, no makeup! Just me!*

Tysabri number 45 #tysabri #dmd #diseasemodifyingdrug #ms #multiplesclerosis #spms #strongerthanMS #MegaSpecial #MSawareness #SmilesWithMyles

Tysabri number 45 done!

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I’m shattered & feel like a pin cushion, covered in bruises thanks to my cheeky veins!

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Got me some comfort food… crumpets, sitting down in my comfies ready to watch the next installment of the Rocky anthology with my boo!

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