Tag Archives: symptoms

17th Instalment: The Steroids

Thankyou text


The steroids

My first experience of steroids wasn’t one I wanted to experience again!

I was so frightened to take the tablets. I kept delaying, using work as the reason I couldn’t take them at that time. I had to cover at a different branch so I had planned to start them the weekend after I had finished covering at Knowle.
This was an excuse, not a reason!

It wasn’t until I experienced the loss of feeling in my feet and my MS nurse making it very clear to me how important it was to take the steroids that I started the course of tablets!

The neurologist prescribed 10mg Omeprazole that I had to take before I took the steroids. These were to protect the lining of my stomach as Steroids can cause digestive problems. Anyone with previous gastric problems should take medication to protect their stomach. I have had problems in the past with my stomach and so would definitely need these tablets.
I have since found out that this medication is always prescribed at my hospital for anyone who is about to undergo treatment of methylprednisolone (Steroids) for a MS relapse.

When I saw that one of the side effects to the steroids was indigestion I was so worried about taking them. I had a bad feeling because of my earlier history of stomach problems. This was a ‘reason’ for delaying taking them not an excuse!


It was the day after speaking to the nurse that I decided it was time to ‘put my big girl pants on


I took my ‘pre’ steroid tablet (Omeprazole) easy!

Next I opened the bottle containing the ‘high dose oral methylprednisolone’- steroids. I put out the palm of my hand and gently shook the medicine bottle until the tablets gathered in my hand.

5 tiny blue tablets taken all at once everyday for 5 days! To be taken with water or juice. That is all it said, no other specifications.


Oh my the taste! As soon as I put the tablets in my mouth they started to dissolve when they touched my tongue!
The taste of metal was awful


I had to find something, anything that I could eat or drink just to take the taste away!
The next day I made sure I took the tablets with fruit juice not water!

I have since been given a tip when taking the tablets, put them inside a bit of bread, small enough to swallow. That way you don’t get the vile taste in your mouth!


After taking my first dose of ‘oral steroids’ I continued to get ready for work and headed over to Knowle, the branch where I was covering for the next few days. My partner took me as I have always gotten anxious driving to new areas especially when on a time restriction.
The day went really well, in fact whilst I was taking the medication I felt good but only when I was distracted with work. I felt really positive and I think I performed better!
The truth is, the steroids made me quite hyperactive during the day so when I got home the extreme tiredness hit me!

I was in pain with my joints and my muscles were really tender. I remember feeling as though I had been hit by a steam train!

The positive with the steroids was that I didn’t have any troubles sleeping at night! When my MS nurse asked me how my sleeping was she very shocked to hear that i had no problems!

Although when she found out I was still working whilst taking them she didn’t seem impressed with that! I hadn’t realised it would be a problem!


Looking now at what the possible side effects are I think I did quite well!

Lets have a look at my check list of side effects. I have written in red any side effects I had:

  • fever or chills
  • flushed, dry skin
  • fractures
  • fruit-like breath odour
  • full or round face, neck, or trunk
  • heartburn and/or indigestion (severe and continuous) YES
  • increased hunger YES
  • increased thirst YES
  • increased urination
  • loss of appetite
  • loss of sexual desire or ability
  • lower back or side pain
  • menstrual irregularities
  • muscle pain or tenderness YES
  • muscle wasting or weakness YES
  • nausea
  • pain in back, ribs, arms, or legs
  • painful or difficult urination
  • skin rash
  • sleeplessness
  • sweating
  • trouble healing
  • trouble sleeping
  • unexplained weight loss
  • unusual tiredness or weakness YES
  • vision changes
  • vomiting
  • vomiting of material that looks like coffee grounds

More common

  • Increased appetite YES
  • Abnormal fat deposits on the face, neck, and trunk
  • acne
  • dry scalp
  • lightening of normal skin colour
  • red face YES
  • reddish-purple lines on the arms, face, legs, trunk, or groin
  • swelling of the stomach area
  • thinning of the scalp hair

So as you can see out of all the side effects, I suffered from the mild ones!


The last day of my steroids was a Sunday. This is the day that I was originally going to start them!

I woke in the night in absolute agony with my stomach! My partner had to phone the emergency doctors so I could be prescribed something to ease the pain.

I knew why I was in so much pain, I had problems many years ago with my stomach that was investigated. The only explanation I was given after my tests was that I have a very sensitive stomach. This is why I reacted so badly to the steroids.

When I was prescribed my steroids I was also prescribed Omeprazole 10mg, this wasn’t a high enough dosage for me & every time since then that I have needed steroids I have to be given twice the amount.


We didn’t get any sleep that night and I was in no fit state to work on the Monday. I was due at my normal branch but would be working on my own as were so short-staffed. This meant that I needed to call the area manager to get someone to open the shop and cover me. I also needed to organise a way to get keys & the alarm code to who ever would be covering! I could hardly stand up because I was so worn out from the pain let alone organise all of that!


I had to leave it up to my partner to do every thing. She also had to collect my medication that I had been prescribed and let her own boss know what was happening!

All I really remember of that morning was sitting slumped in the passenger seat of my car. Waiting for my partner to get my tablets and leave my key in the café next to the shop for the woman who was covering for me.

I was driven home where I slept for the day, I woke to have some soup for my dinner and then slept through the evening


I have never slept for that long before! I was concerned incase I wouldn’t sleep through the night but I did!

I wasn’t able to go back to work for the rest of the week. I felt not only as though I had been hit by a steam train but as though I had been through ten rounds with Mike Tyson!


Another good image to show how I felt for the rest of the week is this one:

I not only felt exhausted from how the steroids were making me feel but because I didn’t listen to my body & rest!

Lesson learnt!

Never take steroids and continue to work!

Take time out and do not ignore what your body is telling you!


14th Instalment: That’s that then! P1


Thankyou text




11th August 2010….

Please note that i don’t remember all of this day exactly, its hard to remember everything when you are being bombarded with so much information!

Some of what I write may not be exact but I will try my best to get it right! It is too hard for my partner to have to remember all of these events and I don’t like to ask other people so I’ll plod along as best I can!

I sat waiting with my partner and my Dad, waiting for someone to call my name, waiting to be given an answer to the biggest question I had hanging over my head!

None of us spoke, we just sat, watching, watching all the other people who sat waiting, they were also waiting for answers. Everyone’s answer would be different. We weren’t all there for the same reason.

I was in my own world again when my Partner very gently put her hand on my knee and said ‘its time’ My heart sank

I looked up and a nurse called my name for the second time.

I stood up & walked towards her, she had a very gentle voice and a kind forgiving face. I had a nice feeling about this lady.

I noticed how I felt calmer, I felt at ease.

Why did I feel like this now when only moments before I felt like my heart was going to pop out of my chest it was beating that hard!


I followed the nurse into a consulting room where another woman sat in a chair behind what looked like a giant desk! When I was in the room and sat in a chair next to the desk I realised that it wasn’t the desk that was huge, it was the woman that was tiny!

She introduced herself as one of the Drs on the neurology team (I don’t remember her name!)


She went through some of my medical notes with me and explained that she would be doing some neurological tests and asked me to make my way to the bed and sit on the side.

The lady Dr stood up and started to walk towards me, my goodness she was tiny in stature but huge in width! She was pregnant and looked as though she hadn’t got long left until due date!


I sat there in my own world again! I do this often! I often take myself into dream world when I should actually be concentrating on what I am being asked or told to do.

I just sat there on the side of the examining bed with my feet dangling just thinking do I take these trainers off? I couldn’t remember if I was asked to!

How odd is it that I can remember useless facts like this but not all of the tests that were done!


When the Dr got to me she started the tests by checking my vision, I was still blind in my periphery vision, I think I had started to get used to it if that was at all possible!

The Dr asked me to follow her finger with my eyes but to keep my head still, as I did this and she moved her finger to my right periphery, I lost site of her finger. She asked me to continue to look there and not move my eyes. Well, this seemed to be impossible! Every time I strained to keep my eye still it pulled back to the left! This was an extremely strange sensation! It felt so odd, as though I had no control whatsoever. I started to get upset so the Dr went onto a different test.

It seems such a blur all the tests she did and unfortunately i just can’t remember them all!


We moved to a different room when that Dr had finished doing her tests, again the friendly nurse followed us all into the room and sat at the end of the bed.

There was a happy looking Dr sitting at a desk, he stood and introduced himself ‘Dr Shehu’ I shook his hand and sat down next to the desk.

He sat and looked through my notes and asked me to explain to him my symptoms, I told him exactly what was written in my notes, I lost vision in my right eye!

He asked me to take off my shoes and socks and to lay on the bed. At this point all I could think of was ‘that’ appointment with the neurosurgeon! This time I didn’t have to strip down to my underwear, he draw the curtain around us and that lovely friendly nurse was right at the end of the bed!

He continued with even more tests, some which the pregnant Dr had already done and some new ones.

The sensory test is one that I remember, it involved the testing of the main parts of my body – face, trunk, arms, and legs – for differences in sensation. Sensitivity to touch was tested by the Dr simply by touching my skin and sensitivity to pain was tested with a pinprick. I was surprised with how little I could feel! It wasn’t something that I was aware of! After all I was here because I had lost sight in my right eye, right?


Once all the tests were complete Dr Shehu then handed me over to the friendly nurse that had been following us around….


To be continued…..



7th Instalment: The Holiday

Thank you every one for patiently waiting for this, my 7th instalment.

My aim is to inspire & be inspired, to continue to be strong & continue to be confident!
I may be slow at blogging but that is only due to my MS. As with everything, I’ll get there eventually! 


After the massive trauma of loosing our boy ‘Jake’ we had to decide what we were going to do about the caravan holiday we had booked.

Were we to stay at home where the memories would be painful or were we to take a slow drive to collect the caravan and make our way to Somerset?

It really was a horrible decision but after hearing our youngest dog ‘Ollie’ pinning for Jake we thought it would be good for all of us to have a change of scenery.
We felt a little concerned about what people might think of us but it was our decision to make and it turned out to be a holiday full of memories!

As we were newbie hikers with all the correct walking gear we said that we would take it with us so we could do a lot of walking and it would be for Jake!
We took some of his fur with us and left a bit of him in all of his favourite places, this even included the stream that he loved to swim in just outside of the campsite.

We literally walked miles! Even though Porlock was a regular place that we  visited for our holidays we had never actually explored it much on foot before!
It felt like a real adventure for us, we bought some ordnance survey maps of the local area & chose the routes along scenic paths. The shortest walk was around 9 miles!

We certainly made the most of our time away! We even talked about looking at properties there, after all we knew we were definitely selling our house!
We didn’t make any appointments to look at properties but the seed had been sown!

We were about four days into the break and our friend came to join us for the weekend.
Unfortunately he didn’t bring any proper walking gear, so we carried on visiting our favourite areas by car. This was fine by me as a lot of the places we love were a bit too far to walk and by this time I was starting to get a slight limp because of the pain that started in my hip just before our holiday started.

We spent our evenings walking the lanes close to camp, not too far because of my pain and we didn’t need to go far for what we wanted to do!
For one of my birthdays I was given a ‘bat detector’ and an evening course learning all about the different species of Bats and how to use Bat detectors, we even went for a walk to hear the bats if we were lucky to find any!

I am very passionate about nature with Bats being one of my favourite creatures! I find them so fascinating! I can only describe the feeling as a great ‘buzz’ when I see a Bat and hearing them as well is incredible!
My partner was given an extremely powerful touch for her birthday so she could see Bats even from a great distance! We used to laugh about it as it could so easily be used as the bat light for ‘Batman’!
I remember we met a couple on the camp site who came with us on one of our ‘bat walks’ it was so nice to share the experience . The night they came with us was fortunately one of the best nights. They loved the experience with the bats and to learn so much about them!

At the end of the weekend it was time for our friend to go home.
Once he had gone we felt so lost, we didn’t know what to do with ourselves!
The next day we continued with our walks, again using the maps we had brought.
I’m not sure what day it was, all I remember is being half way up a wooded hill when the phone rang!
It was the vets to let us know that Jake’s ashes were ready to collect! Gulp! We weren’t expecting that! We should have!

We turned around and walked straight back to the caravan, packed everything away and left the next day!
We just wanted our boy back!


And so it begins!

So this is how it all began, my story of my MS. What my symptoms were, through to diagnosis, and up to now!


2010 turned out to be a very tough year!

In the March of 2010 myself & my partner where in discussions of selling our house & moving, we had seen a house that we had fallen in love with & put ours on the market with the intention of buying the one we had seen.

It was in this same month that I started to have problems with my vision.
It started in my right eye. In my outer peripheral vision I was seeing flashing lights, the best way I can describe it was like the flashing from a sparkler on bonfire night!
I thought I was getting a migraine, I have had these before so I knew what to expect… A violent headache followed by sickness. This never followed though! Instead the flashing continued and I started to get pain in my eye.

Luckily at the time I worked as an optical assistant and so the next day I asked the optician at work to check my eye. She said she could see ‘something’ but didn’t have the equipment to see properly so referred me to the eye hospital. Due to it not being an emergency I didn’t go straight away, instead I waited until the next day (Sunday) and went to Birmingham eye hospital. This hospital is further away for us than the eye casualty in Coventry but they were closed on a Sunday!

Sunday morning, we were up at the crack of dawn and made our way over to Birmingham. We wanted to be there as early as possible so I could be seen quickly.
I had my eyes dilated, that’s painful enough even when ur eye doesn’t already hurt! Again the ophthalmologist could see something but didn’t tell me what. He said he wanted me to have an MRI before he would know for sure. I was referred for this and sent home.

I made my way to work the next day, pain still the same except I noticed everything seemed so much brighter & blurred!

When I got into work the pain and light sensitivity was getting much worse and I ended up having to call a paramedic because it was so bad! 

When the paramedic arrived he decided it would be best if I got seen at A&E straight away and took me to hospital.
I phoned my partner to let her know and she met me at the local hospital.
Because they don’t have an eye specialist at local hospital, a dr had a brief look at my eyes. It became apparent when he was looking at my eyes that I had lost vision I my right outer peripheral, the same area I was getting the flashing lights!
I was told I needed to go to the eye casualty in Coventry.

When I arrived there I had all the same tests again that I’d had at Birmingham and was told the same as I was there but this time I was to be booked in for a field test to check my peripheral vision.
It was about 3 weeks later by the time I had done 2 field tests and was back in for the results. They showed a definite loss of vision so it was then decided I should have an MRI scan.

Here’s how it is….

11th August 2010, I was diagnosed with Relapsing Remitting Multiple Sclerosis. This was the start of my incredible journey! At the time I didn’t realise it was going to be as amazing as it is!

By using this blog I hope to be able to inspire people & to continue inspiring myself as I write about how it all started up to where I am now.

Please continue to follow my blogs as I let u into pieces of my MegaSpecial life!

I will do my best to blog regularly but due to my MS there may be short periods when I can’t, please bare with!