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!

Laughter not tears

Didn’t want to go out, but I had to! 

Was comfy in my pyjamas, but had to go to the chemist.
I made the effort, I had a wash, got dressed, brushed my teeth, brushed my hair, attempted to put socks & shoes on, just about managed! 
Drove past the chemist, open, good! 

Parked the car, stumbled out of car, walked around the corner…….
THE SHUTTER HAD JUST LOWERED, THEY WERE CLOSED FOR LUNCH! AN HOUR!
Oh how I laughed! 

And returned an hour later! 

😂😂😂

Sinusitis again! 

I don’t know about other MSrs, but I always know when I have an infection! 
Balance is terrible & my vision started to blur! 

I’m so sensitive to any changes to my ‘normal every day MS symptoms’ 
Thank you sinusitis I get to have some Antibiotics, which apparently I had before in 2009! Just hope I don’t react to them! 

Picture is my own, as are the words

Todays flare comes from my MS, in the form of TREMORS! 

Shake it baby! 

My body has an internal tremor today and my head is going for it too! 

Not the nicest but a good reason to be a sofa surfer! 

Something I always found hard to do, but not anymore! 

The trick is, listening to your body, a way that my body tells me it needs rest, is a flare of my symptoms. 

Today’s flare is from my MS and I have Tremors! 

Yesterday it was quite possibly my Fibromyalgia with extreme pain (hard for me to tell fibro pain from MS pain)
I understand everyone leads busy lives in different ways, and it is extremely hard for people to find the time to just stop, to rest, to breathe. 

BUT, we have one body for our lifetime!
Preach over! 🙊👌💯 

Staying true to myself!

This past 18 months, I have been working really hard, on becoming my true authentic self. 
I am so much happier in my life now, except when it comes to handling my chronic pain levels!
I don’t like to be truthful about this part of me because I don’t want people to ever think I am after a pity party, I’m not! 

I don’t want people to be sad for me! 


But how can I be authentic if this is a part of me that I don’t share completely! 

So here goes… I have quite honestly never felt pain like this coming from my sacroiliac joint, hips, spine, legs, piriformis muscle and my feet! 

Tonight I broke! I couldn’t stop the tears! 

I am quiet certain this isn’t MS, maybe it is part of my fibromyalgia, maybe its just an old injury that’s never been looked into properly? 

Just like in my health coaching programme I did, maybe this is somewhere that has never been approached completely?
In yoga, they say we hold alot of our emotion in different areas of our bodies. Ok, some of you must have heard of stress being held in your shoulders? Well, that’s exactly what I’m talking about! 

What if the manifestation of chronic pain is  being caused by an unresolved emotional issue?

It has been said that there is a distinct connection between emotions and injuries.

A fall from being pushed in a malicious way will manifest in the body differently than a fall from an accidental trip on a very peaceful, carefree day.
Doesn’t that make you think! 

What ever it is, I’d like it fixed & my life back now… Pain free!

Winning at life!

Thursday treat after aquafit! 
Proud that I come and do this on my own! 
Seems silly that I stopped coming because the Leisure Centre moved! I had convinced myself that, because I don’t know Hinckley, I wouldn’t be able to find its new location & I’d get lost! Even though it’s not far at all from its previous location! 
I had the offer to come with my ‘other mummy’ Crispie aka ChristineRobinson! 

Again though, I let my anxiety win! This time, because the Centre was new, I wouldn’t know where things were & would get more tired! 
These are the stories I would tell myself! That is of course, until I took control of my anxiety! 
Since then, I’ve done so many things by myself that I was just to anxious to do before.
They may not seen much to some, but some of the things include something like, just sitting in a cafe on your own! – Always to anxious! Now, for the third time, I think I’ve got the hang of it!
Another major hurdle was 2 weeks ago, when I accepted how much easier it would be to use the disabled, (some may prefer ‘less-abled’) changing room, after the aquafit class. 
Taking control of my anxiety,

Embracing the changes

And generally winning at life! 

😚🙏👏