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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megaspecial.co.uk

Invisible veins?

This technology would be great for when I have my medication every month for my MS!

Click here for video

#ms #multiplesclerosis #spms #strongerthanMS #MegaSpecial #medication #tysabri #veins


megaspecial.co.uk

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!


megaspecial.co.uk

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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megaspecial.me
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Sun kissed

Like mother like daughter on this subject!

I am the first one to tell someone how silly they are for not looking after themselves in the sun!

It doesn’t matter what country you are in to apply sun cream, the sun still burns in the UK!

You don’t even have to be sun-bathing to apply sun cream, the sun still burns when you are doing some gardening!

Remembering to apply water proof sun cream is just as important too, the sun still burns when you are in the sea!

The thing to remember is the sun will burn you no matter what country you are in!

The sun doesn’t even care if you are on holiday or not, if it sees you out even just taking your lunch break outside because ‘the sun has got his hat on’ He won’t take off his hat to greet you, no, he’ll get straight to work with his powerful UV rays and he’ll fry you to a crisp!

I recently read an article about people using the sun to burn pictures onto their body

Actor Vin Diesel from the Fast & Furious films hails this craze as ‘glorious’ on his Twitter account he says “Sunburnt art is a Real Thing, and it’s Glorious”

I for one cannot see how letting the sun do this to your body is glorious when skin cancer is one of the most common cancers in the world!

There are more than 100,000 new cases of non-melanoma skin cancer every year in the UK!

Annually 13,000 people are diagnosed and there are more than 2,000 deaths, and the death rate is rising!

I know this seems very different from my normal blogs about MS, exercise & positivity but it still links with a treatment for relapsing-remitting multiple sclerosis (RRMS) called ‘Natalizumab’ also known as Tysabri.

Natalizumab is also linked with Melanoma although the association is unclear, in my opinion it is better to stay safe & protect yourself against the sun and its UV rays!

The truth about exposing yourself to the sun without protection is that you are actually exposing yourself to radiation! Now you have to admit, the word radiation is scary! So why do people do it? Why do people purposely lie in the sun without the required protection against first or second-degree burns?

That’s what sunburn actually is, did you know that? How do you feel about it now?

Time to start using sun cream?

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All that said, I am now naming and shaming myself!

Yes, you read that correctly! The picture above is the sunburn I got over the weekend whilst I was in the garden sewing some late seeds & pottering around doing my best to tidy.

I didn’t even give it a second thought to put sun cream on which is so unlike me!

I know by sharing this picture I will very likely be getting told off by friends and family and I accept it! I deserve the telling off because it was very stupid of me not to put sun cream on! Especially as I take ‘Natalizumab’ or Tysabri, I have a fair complexion & I have a suspicious mole that you can see in the picture.

Unprotected exposure to extreme sunlight and ultraviolet radiation is dangerous, it hurts & it looks ugly when the dead skin starts to ‘peal’

Don’t do it!

Wear the correct factor sun cream, a hat, drink as much water as you u leak out & don’t stay in it for too long at any one time!

Enjoy the time you have, spend it wisely & don’t regret the time you spent in the sun unprotected!

Thank you NHS!

NHS

We all have something to thank the NHS for!

Mine is the drugs that I’m on for my MS!

Its been a year since my last little relapse!

That’s some going for saying I used to have around one a month before being put on ‘Tysabri’ my Wonder drug!

Continue reading “Thank you NHS!”