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!


Liberated

​So unbelievably proud of myself even though my daddy will tell me off, my error forgetting my prescription for my fatigue meds on Monday, therefore I have to fix it, right!?
Drove myself to the hospital to cash in my prescription for some drugs! 
Oh yeah and I’m makeup-less as I’m  having an MRI later (different hospital) and I just couldn’t be bothered! 

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!*

Well that was an epic error!

I’ve just taken all my morning medication instead of my night ones! Ok, so my excuse… It’s morning! 

Not the most clever of things to do when my morning meds contain a very strong tablet that I take for MS fatigue! This tablet is also taken by people that have narcolepsy, a sleeping illness where sufferers literally cannot stay awake! 

Yeah! I took one of those when I should be sleeping! Oh joy! 

Only I could do it! I want to sleep! It doesn’t hurt when I’m asleep 

😳😜

Another year older & still smiling!

Well what a wonderful day my Birthday has been!
I’ve been completely spoilt as always by DebbieRahRah!
Had over 100 lovely Birthday messages on facebook alone! – thank you! 
Been given so many beautiful cards & gifts – thank you again!
I got to spend the morning with my Mummy, DebbieRahRah & the kids!
Then it was lunch with my Daddy, Mummy Ju, MegaSpecial Sistaaah Sare from Yorkshire land, her hubby AndyRoo & their Son Lewis and of course not forgetting DebbieRahRah (can’t function without her!)
Back to ours for giggles with DebbieRahRah, Sare, AndyRoo, Lewis, Mummy & my brother.
WhatsApp call with my SistaBlista SkEmily in Texas because Skype wouldn’t work! Good job she has a brain & knows how to use it and press call on WhatsApp because I was starting to go into melt down mode when Skype wouldn’t work!
Then a quick change, apply more makeup & off out again for meal number 2! (I know 😱)

Like i say, an amazing day!
I only wish I could say that my MS didn’t get in the way but to speak the truth my pain has been so much worse than any other day! Because it’s been so full on & busy I didn’t have time to think about my medication other than thinking ‘all I can have is paracetamol because of allergies & normal MS meds’
It wasn’t until I went to get my night time meds that I realised I hadn’t taken ANY of my medication in the morning!

*WARNING – I may be slower than the norm tomorrow*

image
Photo of a gift card purchased by me


megaspecial.co.uk

Rock, roll & wide awake!

Well, my wifey fell asleep on the sofa at 8:15pm! I had to sort the kids (🐕🐕) believe me, that’s a mission!  Make sure said wife took her meds after I found her catching flies slumped on one of the tub chairs in the kithen! Help her out of her onesie, never an easy mission!
Go round the bungalow making sure it’s all locked up, go around once more… u never know!
Sort myself out, meds, pjs etc. Check the doors where locked, I’d forgotten I’d already done it twice!
In bed before 9pm… BOOM! Rock, roll & wide awake!

Now who’s the one with MS! 😜


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