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!


Final day for those Steroids!

So, with the confirmation from the lovely MS nurses yesterday, this morning was officially my final day for the high dose Steroid tablets for my MS relapse.

I do however have another 2 days worth of them, which will shall keep in case/when I need to have them again! But looking at the expiry date, I hope they will be out of date when/if I have another relapse!

I am so happy that I don’t have to have them for another 2 days! 5 is enough, let alone 7!

But I have had them, I’ve put my trust in the medication again! I feel like I’ve been hit by a steam roller and flattened several times, but hopefully, with enough rest and recuperation I shall get over this and bounce back as I have done many times before!

I have increased my meditation to 3 times a day and mentally and I feel better for it!

I cannot in anyway do any exercise, even my stretches for my shoulders is too much! My body feels as though its 10x heavier than it is! My muscles ache, it hursts to wear clothes. But needs must, in this modern world, ha!

I’m very grateful to Stephy today, for helping me to shower this morning, it got me somewhere to feeling a little more normal!

Onwards and upwards!

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!

Day 3 of 7 Steroids for MS relapse!

Breakfast of champions!

Well, that’s supposed to be porridge to eat before I wash my steroids down with a nice cup of decaf coffee, in my favourite mug!

Melt down…

Last night the low mood hit me hard! I had such a vile attitude towards my DebbieRahRah! I know what you think, she’s amazing, why would I be like that!?

I don’t think even I can answer that! Its like not being the same person in your own head! My thoughts don’t even sound like mine! Snappy! Ok, maybe this was the old me, but not for long time!

I know the answer! Meditation! It helps me, so I need to concentrate more on that!

I miss my Yoga! Since the last class of the foundation course, its like I have lost the confidence! During the last part of 2018 & the first part of this year, I attended a foundation course in yoga ‘Diving deeper’ it was everything I wanted! All the philosophy, meditation, we discussed different types of yoga. All in a wonderful environment & we started to put our own practice together, surrounded by like minded people & no mobile devices! So no photos of anyone doing ‘the best yoga for their instagram account’

It was truly wonderful! I had a few melt downs when it came to doing the homework. Describing how to get into different postures! If I couldn’t physically get into the posture myself how could I describe it!?

That was until my teacher told me, it was only for myself, so write down how I would get into the pose! If I had to use props to get into a pose, then that’s what I had to write! If there was modification I could do that was different to what I already do, then that’s what I put in the box for modification.

I will always remember my teacher saying to me ‘Its only yoga! Don’t get so stressed about it!’

But to me it was more than that, it was a reminder of how different my style of yoga was to so many of the wonderful people in that class!

The final posture class was all the postures that I just couldn’t do! Even the modifications were near impossible because of the pain I have in my shoulders!

That day, I had an epic meltdown! One that I will never forget!

Truthfully, I felt as though I shouldn’t have been there! As though I didn’t belong there!

And ever since, thing’s just haven’t been the same! No personal, private yoga. My meditation has even taken a back seat! That brings me back round to where I started this post!

Last nights meltdown has made me remember a conversation I had with my Carer, Steph last week. While I was trying to get on top of my fatigue management, I came to the conclusion that I needed to continue with only one exercise class a week, but to change from week to week which class I do.

That way, I still get to do all my classes, which I haven’t been doing. Just spread out over time.

Steph asked me about my meditation and was I managing to do it every day? Did I have enough time in the morning to meditate before she arrived to start her day?

The answer, truthfully, was no! Yes, I have the time, but I just haven’t been sticking to it. I have found other things to do, that hasn’t been as important as my mind health, my meditation!

So that’s it… That’s why I’m not handling thing’s well!