This week in one post… A week of uncertainty

January 6th – 12th 2020

💛 Monday 6th January –

Made the most of our last free day before my wife went back to work the next day, after our alternate weekend
Made the most of our last free day before my wife went back to work the next day, after our alternate weekend

💚 Tuesday 7th January –

I welcomed back my wonderful carer Steph, after her time off over her short weekend with a lovely trip to the far far away hospital, aka UHCW, for a catch up with the dietitian! What a treat!
I welcomed back my wonderful carer Steph, after her time off over her short weekend with a lovely trip to the far far away hospital, aka UHCW, for a catch up with the dietitian! What a treat!

🧡 Wednesday 8th January –

Another day out to the far far away hospital for my monthly MS meds! #Tysabri
Another day out to the far far away hospital for my monthly MS meds! #Tysabri

💜 Thursday 9th January –

Guess where I went today… The not to far hospital, aka GEH, for a chat with my Neuro Physio. Baby steps but I seem to be going in the right direction to turning my leg muscles on again. And a treat for lunch, we went to The Harvester where I had my favorite Vegan Burger ‘The Purest’
Guess where I went today… The not to far hospital, aka GEH, for a chat with my Neuro Physio. Baby steps but I seem to be going in the right direction to turning my leg muscles on again. And a treat for lunch, we went to The Harvester where I had my favorite Vegan Burger ‘The Purest’

💙 Friday 10th January –

Today, a rest day was called for! With dizzy spells and Vertigo, Chair Pilates wouldn’t have been a good idea! So Steph my Pocket Angel, aka PA/Personal Assistant/Carer collect my carrier bag full of medication from the chemist & work her magic around the bungalow, before sitting down to watch the first episode of the British Comedy-Series ‘Sex Education’ on Netflix (its a brilliant series, if you haven’t seen it!) The 2nd season starts soon & I wanted to rewatch the 1st to remind myself. it was a brilliant ‘be kind to yourself’ day!
Today, a rest day was called for! With dizzy spells and Vertigo, Chair Pilates wouldn’t have been a good idea! So Steph my Pocket Angel, aka PA/Personal Assistant/Carer collect my carrier bag full of medication from the chemist & work her magic around the bungalow, before sitting down to watch the first episode of the British Comedy-Series ‘Sex Education’ on Netflix (its a brilliant series, if you haven’t seen it!) The 2nd season starts soon & I wanted to rewatch the 1st to remind myself. it was a brilliant ‘be kind to yourself’ day!

❤ Saturday 11th January –

Katie one of my Saturday girls came to help me today. Hadn’t seen her since the middle of December, so was nice to have a catch up. Other than that, was just a normal lazy Saturday!
Katie one of my Saturday girls came to help me today. Hadn’t seen her since the middle of December, so was nice to have a catch up. Other than that, was just a normal lazy Saturday!

💙 Sunday 12th January –

The day I have been so worried about, has turned into a really lovely day! When I last saw my Neurologist for my MS, he wanted to run tests to try and find out why my mobility has decreased so much in the last 6 months when my MRI isn’t showing anything. These tests are to be done with me as an ‘inpatient’ I had a letter before Christmas to advise me that a provisionary date had been set for 12the January. The letter explains that while they do their best to book people beds, it isn’t always possible for a bed to be available for that day. I had to phone the ward this morning to check if there was a bed for me, but nothing. So, I have to keep calling every morning until one becomes available. They will also call me during the day if a bed becomes available.

Well, no bed today! Hip hip hooray! So we went out for lunch instead! And I have to phone again in the morning!


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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It’s no walk in the park

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However, its not just any Monday!
No, it’s drug day! *courtesy of the NHS*

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So, every 28 days I go into hospital and sit hooked up to a machine! I’m there from the hours of 8am until anywhere between 11am & 1pm!

That’s right, tomorrow is day 28!

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Thank goodness for the wonderful monoclonal antibody that affects the actions of the body’s immune system.
*Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage*

Thank goodness for this wonderful drug that keeps my relapses at bay and is helping me live as much of a normal life as is possible with Relapsing Remitting Secondary Progressive Multiple Sclerosis
*Secondary-progressive MS: People who get this type usually start with relapsing-remitting MS. Over time, symptoms stop coming and going and begin getting steadily worse. The change may happen shortly after MS symptoms appear, or it may take years or decades*
But I still have relapses, or at least I did until I started…

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2.3 Natalizumab (Tysabri) is administered by intravenous infusion; the recommended dose is 300 mg every 28 days. Natalizumab costs £1130 per 300 mg vial (according to the manufacturer’s submission), so over a year the cost of the drug is approximately £14,730 per patient.
Multiple sclerosis – NICE

www.nice.org.uk

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It’s not walk in the park but I’ m ready!
Bring on the drugs!


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Bring on the drugs!

Good film night, excellent day, gym this morning was fab!

Like I said, working out with friends is so much better… Sista Rosemary, Adam Temple, Toni Evans & was great to see you there too Sharon! Brilliant to meet ur hubbie Ian Jackson, our photographer for the #ColorRunBrum #BAM4MSUK I’m sure we’ll convince him!
I’ll drop some sponsor forms round possibly Tuesday now as I’m at University hospital tomorrow!

Now if it’s ok with everyone i bid u all a good night! The 5:30 alarm awaits for Tysabri o’clock!

BRING ON MY DRUGS! I’VE NOT BEEN THIS READY FOR THEM BEFORE! I MAY CRAWL INTO THE HOSPITAL TOMORROW! FORGET THE DRIP, I’LL SWIG IT STRAIGHT FROM THE BOTTLE 😜💉

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