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 But looking at the expiry date, I hope they will be out of date when/if I have another relapse!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?
Having a very sensitive stomach means that I react badly to steroids.
I already take Omeprazole as a regular medication, this is a drug that is prescribed to protect the stomach. The amount that I take is double what is given to most Multiple sclerosis patients on steroids so I don’t get to have more when it’s my turn for the nasty S word!
I took my last steroids on Tuesday which was 4 days ago and yet it isn’t until now that I am really starting to feel the effects they have had on my stomach!
I have felt ‘unwell’ from these steroids since the 2nd day that I took them (6 days ago)
I remember every time I have steroids on around day 7 (now) the reason I say never again! But why do I always give in and still take them! Because it’s in the medical profession that we rely on, we put our trust in them that they are doing the correct thing for US!
Knowing right now that I took these latest steroids for no reason makes me angry!
When I was seen by the Neurologist on Wednesday he confirmed that in fact I am not having a relapse which is great news, but I was prescribed steroids by my GP and for no reason!
I am left quite literally with a bitter taste in my mouth because of this! Had the MS nurse returned my call sooner than the 3 weeks it took them maybe just maybe I wouldn’t have been prescribed the Steroids!
This now leaves me wondering, what is happening to our MS nurses?
This is a great graphic to show how I am feeling today!
A shorter blog today as I’m not very focused on what I’m wanting to do. Concentrating is so hard when you have Methylprednisolone or Steroids pumping through your body! I feel like I’ve been in the wash on a fast spin and thrown in the tumble dryer to dry out!
Perhaps I would make an ideal member of the cast for ‘Walking dead’ becasue thats exactly how I feel! One because that is how my MS makes me feel and two because that is how Steroids make me feel! Double whammy
Tomorrow is my reschedualed appointmnet to see the nurse Neurologist. I was supposed to see my MS nurse today but becasue of my new MS symptoms she cancelled the appointment and booked me in to see one of the Neurologists tomorrow, I’m happy that she will be there as well as I have had issues with the Neurologist in the past!
For anyone to say they are looking forward to an appointment with the Neurologist would be speaking far from the truth! When ever I see this particular Neurologist I always worry ‘what if I can’t communicate how I am feeling properly’ that then leads me to thinking ‘what if I make no sense, will he think I’m a hypochondriac?’
I really dislike this man that I’m seeing tomorrow.
Now I’m starting to get palpitations which could easily be down to the steroids, it could also be because of the anxiety I’m feeling about this appointment tomorrow.
I really hope he doesn’t want me to have an extra day on the steroids which would take me up to the full treatment course. Well tomorrow will soon be here and I hope to have some answers!
The things I have learnt today (but may have already known before and had just forgotten)
1: Steroids are Soul destroying
2: Steroids make everything taste like the worst thing imaginable.
3: Every time my MS plays up like this I feel as though it takes a little bit of me away.
‘Steroid day number 3’ out of my 4 day course given to me by my GP. My energy levels are not great, but that will be because I’ve not been sleeping great! Insomnia comes with steroids unfortunately! The first night in didn’t sleep until gone 4am, last night it was 2am! I wonder what time it’ll be tonight!
Another thing that steroids do a great job of is messing with our moods! My moods are all over the place, now when I say ‘moods’ I mean one minute I’ll be laughing then the next moment my eyes are leaking! I have been very fortunate tonight as one of my friends made me laugh so much the tears stopped!
Another friend also did a great job reminding me how this illness can make us feel so terribly alone when in fact we aren’t!
On the positive side I have heard from my MS nurse today, finally! Just to recap, its been nearly 3 weeks since I first contacted them after seeing my GP on the 21st September. This is when I noticed I still hadn’t got much feeling in my legs. The reduced sensation was starting to creep higher up into my thighs. My legs didn’t feel like my own and my walking was getting worse too. My GP seemed to think it could be a possible relapse but, due to my medication that I am prescribed by my Neurologist ‘Tysabri’, I usually have to be seen at the hospital before I get prescribed steroids to help reduce inflammation in my central nervous system. My GP asked me to contact my MS nurse for their opinion before she would prescribe any steroids for me, believe me, I wasn’t in any rush for these!
On Friday I found myself back at the doctors because I felt as though I was getting worse and fast! I wasn’t panicking like I have in the past, I guess maybe because I’ve come to realise that in panicking I only make myself worse!
It wasn’t the same GP that I saw the first time I way there with this current exasperation or relapse. He checked my sensation in my legs and my lower abdomen which is when I realised I had lost sensation all the way up to my bra line!
My walking was getting worse so the GP wrote me a prescription for steroids, he gave me enough to last me up until I see my MS nurse on the Tuesday! When I collected these steroids I thought the GP had only given me a low dose to ‘tide me over’ until seeing the MS nurse Tuesday 13th October.
Okay, all caught up?
Back to the phone call from my MS nurse who, by the way I am totally grateful for as I know so many people who have MS are without MS nurses.
I feel awful that I had to get PALS involved but needs must, especially as they weren’t returning my calls and I wasn’t getting any better!
She has cancelled my appointment to see her tomorrow and instead has booked me in to see one of the Neurologist’s on Wednesday. This Neurologist is the one that once told me I was a ‘fatty’ and because I was in too much shock when this happened, I didn’t do anything about it!
I have asked for someone to be present at the appointment so the MS nurse said she will be there for me.
She told me that she is concerned that this may in fact not be a relapse as I should have noticed some improvement by now from the steroids. I know in the past though that steroids have either not helped my relapses or have taken longer than 3 days to work!
My question though is this, if it isn’t a relapse then what is it? I know I don’t feel right, my walking is terrible and I can’t feel my legs along with other issues!
I also spoke to the nurse about the steroids I had been given which she thinks are the same as what they prescribe so maybe they aren’t a lower dose and in fact only a day short of the normal course so that the Neurologist can decide if he wants me on them one more day!
The nurse did however notice a change in my speech which seemed to concern her! I was told by a speech therapist that I may in fact be experiencing changes in my speech due to MS fatigue. I have to speak with the Neurologist about this on Wednesday!
Back to the steroids, one thing that can we can count on when taking this rather horrible medication is a change of appetite. This can be any thing from an increase where you literally want to eat everything you see or a decrease, yes you guessed it, the exact opposite!
Here’s my top four silly things I’ve done today!
I’ve opened a treat bag size of Cadbury’s chocolate! Whoops! The worst thing to have around me when I’m taking steroids is Chocolate!
I’ve not had any lunch today, so the appetite was there for the chocolate but not for anything else.
I don’t know where today has gone. No seriously, where does it go! I remember now from my last course of steroids, they make me over think!
No naughty treats for me tonight! Just fruit & yoghurt as I haven’t had that today either, gah, I’m rubbish today at being good!
BASICALLY I’M A NUMPTY & THE STEROIDS MADE ME DO IT!
It’s been a funny old day today! Saying that it’s still been a good day with a couple of very positive emails. Future plans are afoot and very exciting ones at that! I’m such a tease because other than that I can’t say anything else!
Sorry if this blog has been a little on the ‘rambling’ side but it’s what steroids do to me! I’ll be back to normal soon, I hope! Oh and it’s a day late to be published as well! Oops!