No new lesions - woohooo!

I have wanted to write a blog for a couple of weeks now and thought of a few different ideas but just didn’t write them. I don’t like to write a blog for the sake of it because it’s not very useful to people and that’s the whole purpose of my writing really.

I was going to write about stress and MS, am I clumsy or is it my MS and how to bring my MS into a conversation for awareness rather than sympathy. But then on Saturday I received a letter from the hospital about my recent MRI scan and found out over the last year I have had no new lesions – wooo!

For anyone not in the MS world, this means the treatment I am on has been working and it’s stopped my nerves getting damaged. A new lesion means a relapse so it means I haven’t had any sort of relapse in the last year (hidden or visible). I get a MRI scan every year to monitor it.

This has been a massive relief for me and I’m really happy how effective the treatment has been. Although I’ve had some side effects since going on the treatment (the main one developing an over active thyroid) it has been the best option for me and how my MS affects me.

The treatment I was previously on had stopped working and I had a couple of relapses so the consultant decided to change it. This was the best option for my age and it meant I didn’t have to take a tablet every day. It also meant that when I was ready to start a family I could without having to change my treatment plan. So, it was the best decision for me and others around me.

Looking back to nine years ago when I first got diagnosed, I was lost and frustrated, and I didn’t think there was much of a future for me. My life could have been totally different if I didn’t listen to the advice from my consultants. I feel healthier than ever and let’s hope I’m saying the same thing in 10 years time.

Having a thyroid problem is a real problem

 I thought MS was annoying enough until I got told I had an over active thyroid. The thyroid is always thrown around whenever someone is feeling tired and run down but I never realised how serious and horrible it is until I started suffering from it. 

At first I was losing loads of weight and thinking this is good, I needed to lose a couple of pounds (something most girls would say). But then I realised I was finding it hard to concentrate on the simplest task, getting extremely tired, struggling to exercise without getting horrible pains in my chest and feeling very down and anxious (so much so, I had a bit of a breakdown at work). To be completely honest it’s physically, mentally and emotionally drained me and I wouldn’t wish it on anyone.  

The reason I have a thyroid condition is due to my MS treatment. It’s one of the main side effects of it. I had my last treatment over a year ago but only just recently had the thyroid problem so at first I thought I’d avoided it. 

My nurse has made sure I’m on the right dose of medication and I’m hoping that it will soon settle down and I’m on the mend... starting to think I’m that problem child you had in your class at school haha! 

I think if you do have anything wrong with your thyroid it’s really important to get on the right dosage of medication asap so you can continue living your normal life. 

The lockdown continues...

What a crazy time! We’re all in limbo and not knowing what’s going on.

I’m furloughed (you know that word no one had ever heard until 2020) and I can’t say I’m hating it. I’m getting time to do loads of different things which I wouldn’t do on a normal holiday from work or a weekend.

So, us lot with MS are vulnerable to this as our immune systems are weak. We have to be super careful, I didn’t actually get a letter from the government say I was on the vulnerable list (which I was quite glad about) but I know I’m not as strong as some people so I am anyway. The only time I’m leaving the house is for exercise once a day, that’s either a walk or run.

Not working is strange… I’ve read books, attempted to learn Spanish, exercised a lot (my Apple watch doesn’t know what has hit it), tidied up a lot (my bathroom has never been so clean), done a lot of quizzes with family and friends, cooked, baked and done some online courses.

Here’s somethings that have helped me through the last few weeks:

·      I’ve set an alarm every morning (trying to make it easier for when I do return to work)

·      Put a bra on every day (girls that one is just for you)

·      Do what you want to do, we’re probably not going to get this time back so if you want to binge watch a TV programme do it – don’t feel guilty about it!

·      Make a to do list everyday – I don’t mean make one so you have to succeed at them all and some of my to do lists have had watch tv on, but it just gives you a bit of structure

·      Talk to people, let out your anger – some days are bloody stressful

Things I’ve learnt from lockdown:

·      No matter how many miles you run, if you eat chocolate every night you don’t lose weight

·      If you add garlic to any dish, it normally is nice

·      You don’t need to have takeaways; you can cook everything possible in the house

·      Some people are just idiots

·      I’ve never visited the Colliery Woods so much (it’s only across the road but before this I’d never been in)

·      Doing a quiz before bed makes me not sleep

·      Work is not life, it’s somewhere you go to make money

While this is all going, I also got a call to tell me my thyroid was overactive (I think I told you all in my last blog)… excellent!

It made sense though, when she explained some of the symptoms, I had some… except the one where you lose weight – god damnit!

The itching, bad skin were the main symptoms I was experiencing and although I didn’t feel fatigued, when I was running my body was but the doctor told me that it was because my body felt like it had already ran a marathon so me trying to run was as if I was running another one!

Although the NHS at this time are under a lot of stress, they got me on tablets straight away and I’m sure they were an illegal drug because now I feel great.

Stay safe guys!

Having MS in the current pandemic

Okay first I need to start by saying what the hell has happened to the world?! 

We’re all currently experiencing something we’ve never known before, so nobody really knows what to do and how to act but we’ve all got to stay positive

MS is one of the illnesses that is on the vulnerable list, so I’ve been advised to be extra careful and if possible, avoid people and stay at home. If people like myself with MS get it, it’ll more than likely affect us more than the average person.

I’m not the type of person that just stays at home a lot so when I was told I had to, I felt like I needed to make a list of how I could entertain myself. I’m working from home for the foreseeable future so that means I have made a home office on my dining room table (whether my dad likes it or not). 

Working from home is weird- I was told before I started that I should make myself a routine otherwise I wouldn’t be able to concentrate. So I did… 

I've started going for a morning run before I turn my laptop on to start working for the day then at lunch time I exercise then have my lunch before getting back to work for the afternoon. 

It’s a pretty simple routine but I felt like if I didn’t get out the house, then I would go crazy. 

Working from home is a pretty new experience for most of us. What I’ve learnt from working from home: 

Lighting is always bad on a video call
I must talk a lot during the day as I got so much work done
Niall Horan’s new album is really good
I don’t snack as much when I’m sitting in the house
Fresh air is amazing 

When you have MS, you have a weak immune system, so you catch everything hence why we are in the vulnerable list at the minute. I probably get a cold every two weeks, to be honest I’ve forgot what it’s like not to have a cold.

Every month I go to the hospital to get my bloods taken to make sure my treatment is working, and my blood cells are normal. 

Last Monday, it was my monthly appointment, if the results are normal, I don’t normally hear anything, I just get a letter through to my next appointment. On Wednesday my nurse rang me to tell me that the bloods that were taking earlier in the week have come back and I have a low thyroid. I wasn’t too panicked, but I did think okay this is when I do need to be extra careful with the coronavirus going around (sometimes I think I’m invincible). My nurse explained that the symptoms I could get was very similar to the coronavirus so don’t panic if I do get a cough. 

Typical of me to have something that has the same symptoms as the most talked about virus in the world!! 

Anyway, I have an appointment this Monday to sort it out so if you hear me cough, don’t worry I probably don’t have coronavirus just a dodgy thyroid!

It’s a difficult time for us all but all we can do is not panic and be positive. Staying in is the new going out for the next couple of months but it’s our chance to spend time with our loved ones, watch rubbish TV, play board games and create new memories. 

Stay safe and look after eachother guys xoxo

Working with MS

Sorry I’ve been a bit quiet recently, I’ve been enjoying my summer, everything’s good though and my treatment is still working better than ever. So here goes my next blog post... 

When I was younger, I had big dreams and always wanted to be a swimmer/a footballer or a presenter on Sky Sports News then I realised as I got older I enjoyed the sports but I wasn’t that good at it (got to be honest) and I definitely wasn’t committed enough to do anything like that. Plus I would’ve been an awful Sky Sports presenter since I can’t even string a sentence together when I’m talking to my friends...

I started setting my sights on more realistic careers like being a physiotherapist when I was doing my GCSEs. I thought it still had a connection with sport but it was something I could really see myself doing, so I went to sports college. Then while I was at college I got diagnosed with MS which made me stop and think actually if I’m getting symptoms like losing the feeling in my hands then I wouldn’t be a very good physiotherapist. 

This is when I was stuck and had no idea what I wanted to do... probably a feeling everyone has had at one point in their life. I had to think of how my MS could affect me, which is not the easiest as it’s an unpredictable illness. I decided to go and see a careers councillor and long story short I ended up at Sunderland uni doing PR. 

In my final year I applied for a internship at the Works. I didn’t know what to expect, id only worked in John Lewis at the weekend but I somehow managed to get the job as an Account Executive. 

I was scared to tell them about my MS. I didn’t want to make a fuss and think of me as disabled but it was important that they knew. I’ve had two relapses since I’ve worked there and they’ve been great in the situation. I’ve had the help and support I’ve needed when I’ve needed it, but anyone who knows me knows I don’t like to ask for it! 

Four years down the line I’m still at the Works and I’ve just been promoted to an Account Manager. 

Since I was 18 I’ve always had in the back of my mind that my MS will hold me back and if it did get bad, I might not even have an option of a career. But the thing is with MS you can’t think of it like that. It’s so unpredictable you can’t wait around for it to potentially affect your life, you’ve got to take the opportunities that are in front of you. 

I’ve worked hard over the last few years to get to where I am and although my MS can impact my life, it doesn’t stop me living it! 

Recovering from my treatment

Anyone that knows me knows I hate resting, I like to be doing something all the time but after my treatment I needed to rest to ensure I would recover properly. After my three days of treatment I had a day off which consisted of me lying in bed and watching Netflix.

Then it was the weekend and I felt a little better so I had a shower and got myself sorted as I normally would but then when we nipped out I did not feel good. Just a shower and getting ready had wiped me out, this is when I realised I was not ready to go back to work and get back to normal. Looking back at that week, I don’t remember it. I was so drugged up, it was such a blur.

I took another week off, which you would think why is she complaining but I was BORED. In that week I read a book, watched the full two series of Dynasty - great tv series by the way, but all I wanted to do was get back to normal. The only people I’d really seen was my mam, dad and Mark - they were probably sick of me complaining! Marnie and Amy then came to see me one night which meant I had new humans to talk to!


As the week went on my headaches got better and I felt a bit more human so I started to walk the dog to get some fresh air and a bit of exercise. This really helped me so by the time it got to the next weekend I started to feel like I was ready for the real world again.

I’m back to work now, exercising again and feel better than ever. Looking back I’m so glad that I listened to my body, and actually rested or as mark said ‘I mastered the art of doing nothing.’

If anyone has this treatment or any other similar treatments, I would definitely advise you to rest, take everyday as it comes and find a good series on Netflix, it cures the boredom for a bit.


Thank you to everyone who sent me a message to see how I was, or popped into see me. It really helped me get back onto my feet.

My experience of my second alemtuzumab infusion

As a lot of you know this week I’ve been getting my second round of treatment. Strange to say but it’s exciting when this time of year comes round knowing you’re getting the treatment you need to live your life to the fullest. But it’s also very scary knowing you’re sitting on a ward where people of all ages are getting chemo and life changing treatment - it really makes you appreciate what you have a lot more.

The treatment itself wasn’t actually too bad.

It starts with steroids for an hour which gives you a metallic mouth - my best advice for that is drinking coke, it takes the edge off it. Steroids also make you very hungry so all I’ve done is eat ... oh and they keep you awake too so I haven’t been having the best night's sleep!

Then it’s 4 hours of the treatment, which sounds long but when you have Netflix it doesn’t feel that long. There are loads of side effects with this drug, some serious and some not so serious. The main ones that I’ve had the last few days are:

- A rash which looks like chicken pox

- A headache which has some weird sensations (I feel like these are just the treatment doing their thing in my head)

- Exhaustion, this is a mixture of sitting in a hospital all day and the treatment itself

- Being hot and cold - (I’m not talking about Katy Perry here) One minute you’re shivering and the next you feel like you’ve sat in the sun for 4 hours

- Aches and pains - everything hurts, again that is just because my body is going through a lot

More serious problems are thyroid problems and cutting an artery in your neck, so really I can’t complain about being tired and having a headache haha!

After three days of sitting with a drip in my arm seeing Mark walk into the ward to pick me up on my last day was the best ... well until he nearly collapsed when they took the needle out hahaha!

Today is my first day out and I’ve been told to rest (if anyone knows me well, I hate resting) but it’s what I need to do to get myself back on track.

But I woke up this morning, very tired, with a splitting headache, a sore kidney and a very big rash so I think staying in bed is the best place for me. My body has been through a lot and I need to remember that.

I just want to also mention how grateful I am right now for all the well wishes and gifts I’ve had the last couple of days. I have so much support from my family, my boyfriend and his family and some of my closest friends.

I think the drugs (prescribed) are making me soppy so take it while it lasts.

Overall it was a successful week getting my treatment and hopefully I will start getting my strength back in the next couple of weeks but for now I’m off to sleep... goodnight.