Multiple Sclerosis (MS) is a difficult disease! We don’t CHOOSE to have it, but sometimes (mood dependent) we can CHOOSE how we handle the many symptoms of MS
Mostly I try to choose laughter…
Me: Looking at a pile of gifts Deb had unwrapped… “Is that everything you had in your stocking?”
Deb: Looking very pleased with her gifts… “Yeah, why?”
Me: Getting brain ache thinking… “I’m sure there should be some other things” 🤔
Deb: Looking surprised… “Oh, okay”
Me: Walks in to the lounge feeling very pleased with myself… “Left or Right?”
THIS STORY is all thanks to my MeSsy brain letting me forget where I put the first xmas gifts I bought for the wife! 😂
This Christmas card is so perfect for this situation!
If I stay in the moment, being more ‘present’ I’m more likely to have a better memory recall & know where I put things! Also… If I buy her less presents, I more likely to remember /have better memory recall and know where I put the present (less of!) 😂
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!
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!
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!
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!
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!
Its been a long time since I was prescribed these little devils!
After a routine visit to my opticians on Thursday and several tests later, it became clear that the pain I was getting in my head wasn’t just characteristic of my fatigue coming on strong!
The lack of vision, which I hadn’t allowed myself to accept until it was real, these things combined could only mean one thing… inflammation in my optical nerve. Such fun!
Bring on the little blue pills! Oh god, not those ones! Nothing against a little help where its need, but that’s not this blog! Ha!
No these blue pills I’m on about come with a distinctive metallic taste, heartburn, mood swings, drowsiness (for me – most of the time!), increase in energy levels (for others – most of the time. Me, I have the occasional burst of energy!), facial flushing, increase in temperature, easily distracted (more than normal!), pain everywhere and the feeling of wanting to empty the whole contents of the fridge into my stomach!
Not everyone experiences the same symptoms! We are all individuals after all!
After the opticians
When the appointment was finished, it was like I could have told the optician what he was about to say! After all, I’ve had optic neuritis more times than I can remember! Plus, I worked in an opticians for many years, before being made redundant when the company sold to Vision Express!
I digress… I’m on steroids… What do u expect! Haha!
So, my optician, who was lovely. Told me what I knew… I was being referred to the hospital, where they could perform more tests to confirm optic neuritis (ON)
He did me a letter to take to my GP, one for myself & I also asked for one so I could take it to my MS team, where I went the following day for a follow up physiotherapy appointment! I discussed with my carer, and we agreed it would be a good idea to take the letter up to my MS team while I was at the same hospital! Mainly so that they knew what to look out for on my MRI scan I have next month!
That phone call!
The following day, Friday, after my carer had finished for the day and I was just about to settle down for my afternoon snooze. My phone rang! Like literally 10 minutes after Steph had left!
It was the new MS nurse ‘Michelle’
I had seen her earlier that day when I took the letter from the optician. She hadn’t seen me, as I stayed outside of the room on my mobility scooter.
She said she had seen my letter that I took in & wanted me on steroids! Gahhhh! She also said if she had seen me earlier that day, she would have prescribed me steroids there and then!
I told her I didn’t want them, but of course, she talked me into it! I always say after I have high dose steroids, never again! But the thought of what could happen if I don’t get the inflammation down in my brain, is scary!
I would have rather had the intravenous steroids as they are over and done with in 3 days! Unfortunately, it has to be the tablet version as they are full to capacity in the ‘Day Case Unit’ at far away hospital!
Above and beyond
I spoke to my GP about my MS nurse contacting them to arrange the prescription. I was told I would have to phone back at 5pm to see if it had been done. I explained that I hadn’t got anyone that could collect it for me and she agreed to get it sent to my chemist.
I phoned my chemist then to let them know and was waiting for a phone call when they had received my prescription.
Next, I had a call from my partner as she had called in at the chemist on her way home from work… No surprise, the tablets would need to be ordered and wouldn’t be in until Saturday. Now I was waiting for a phone call on Saturday when my tablets had been delivered.
During all this time, I was keeping my carer ‘Steph’ in the loop on the conversation as I was certain she would like to know.
The following day (yesterday) I had a message on WhatsApp from Steph (carer) asking if I knew what time my tablets were to be collected, as she would collect them for me and drop them in!
It was her day off, there was no way I was expecting that! I certainly wouldn’t have asked! What and amazing thing to do for me!
I phoned the chemist, tablets were there but they would need around and hour to dispense them.
I messaged Steph back to let her know.
Within the hour Steph was round with my tablets, or part of them anyway! (More to collect Tuesday!)
She didn’t only bring my medication, she also made sure I had some lunch so I could have my tablets with and made sure I took my tablets! (She knows me so well, already!)
Her husband stayed in the car, when I told her he could come in, she was so considerate to our newest addition to the family, our dog from Cyprus ‘Muse’ who is really frightened of men. She explained that he was ok in the car, to save upsetting Muse!
How amazing! I’m still blown away, that she thinks of me even when she’s not working! And to make sure I got the medicine in me as soon as possible! That is what you call going above and beyond!
Cheeky cherries rather than the steroid survival kit
I always find when I have steroids, the taste they leave is awful! It doesn’t always last all day, but for me the majority of it and for every day that I take them! This isn’t always the same for everyone.
The only thing that I want that helps with the taste is coffee (always decaf) and fruit pastilles!
Orange lucozade because, well, it’s ok to have a bit of what you like now & again! And this calls for it!
Chocolate, because, well… re-read the paragraph above! Haha!
BUT… All I really wanted to eat yesterday (during the day) was the cherries that were in our fridge! Super proud of that!
The chocolate however was shared between Deb and I in the evening and I still have nearly all the Lucozade left. The fruit pastilles haven’t been opened… YET!
Today, I’m hoping to finish the strawberries!
So, back to the title… ‘Santan’s smarties’, ‘Stair rods’ or ‘Steroids’
Because of my intense dislike, hate even, to steroids. I change the name of them! I know I do this because I don’t accept them. But maybe, the way to accept them is to call them what they actually are!
If I accept them, perhaps I can keep my mood lighter and make the whole time I’m on them a better experience?
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!