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.

The four stages of MS

In the last seven years, I’ve went through a few different stages of how I’ve felt about the illness. Since it’s an unpredictable illness, one day you could be fine and the other day you could be poorly so you kind of change your mind on it all the time. Here’s the main four I’ve felt over the last seven years:

Denial

I would say that this is probably a stage that everyone with MS goes through. When the doctor tells you the bad news, you think, no that can’t be true, they’ve probably just made a mistake, I’m too young for this. I thought that for the first year. I didn’t tell people, I only told people I was close too and that was it, it was a bit embarrassing if I’m going to be totally honest. I think it eventually sunk in when I was about 19 and I had eventually realised I had it and there was nothing I could do so my attitude changed.

Acceptance

That brings me onto acceptance. This is probably the most important one because it helps you move forward with your life. I remember when I really accepted I had it and started looking at groups I could join and other people’s experiences on the MS society website.

I then started telling people. Not just out the blue of course, but if it came up in conversation, I would tell them. I got a few weird looks and comments like I’ve discussed in a previous blog post, but it was better than hiding behind it, but if anyone knows me I’m like an open book so it doesn’t take me long to tell everyone I know something!

Hope/optimism

This is probably the best one, you eventually get your purpose back and decide there’s more to life that just moping around.

When I became optimistic about it was when I started to do charity events. I had never really had something I felt passionate enough to raise money for until I got diagnosed so I thought, I can do this, and I can help make a difference.

I’m going to be corny here but the new Sigrid song, don’t feel like crying is a good listen if you’re feeling down – you can guess what it’s about by the title!

Determination

Determination is such a good feeling. You feel like you have purpose when you’re determined to do something. I created this blog as I was determined to help people with MS. I ran the GNR because I was determined to raise money for the charity. I go to work everyday and get on with things because I’m determined to make a difference in my job and not let the illness get me down.

The feeling of determination makes you feel like you have the illness rather than the illness having you!

Is it my MS or am I just being paranoid?

Hi there, sorry I’ve been a bit quiet recently. I’m going to be completely honest and say I’ve had nothing really to write about. Life has been good. I’ve been on the go celebrating Christmas and then turning 25- ahh I’m getting old! I’ve also been pretty fit and healthy so far this year, well until the common cold hit me last week...

I hate the cold, it defeats me. I’m an active person but when I’ve got a cold, I’m constantly tired, I feel sorry for myself and complain a lot (which I hate doing), and all I want to do is have a bath and sleep. That is how I felt all last week. I didn’t even step foot in the gym and I made use of my comfiest jumpers looking like a top tramp at work. The only thing that got me through the longest five days of the year so far was Lemsip and the thought of birthday cake at the end of the week.

Not sure if anyone else who has MS feels the same way but when I get a cold I don’t just think it’s a cold. I feel like I’m always more deflated than ‘a normal person’ and then I panic ‘will I get a chest infection, kidney infection or anything relating to my shit immune system?!’ I always feel like I’m on edge because it could be a relapse. 

Mrs precautious AKA my mam always makes me go to the doctors to get checked just in case but last week they said I was fine and would get over my cold quite quickly for ‘a healthy girl’ - I don’t think he read my notes properly haha!

But back to my point, I always feel like whenever I get ill, whether it’s the cold, or muscular pain, is it MS related? Even being tired - probably the most confusing of them all because so many people who have MS suffer from fatigue and it’s one of the most common symptoms of MS. Sometimes I think am I just tired and do I just need an early night? Or is it the dreaded fatigue... I feel like I’m just being dramatic if I say I’m fatigued.

MS is so complex and different in every person; some people might get one symptom and another will never get it in their life. That’s the unpredictability we’ve got to live with.

I’m starting to learn that if it bothers me in my day to day life then it’s worth mentioning to my nurse but if it’s just a random pain which goes away I will just forget about it.

Hopefully I’ll avoid being ill in the next couple of months before I go into hospital for my next treatment in May!

New year, new post from a guest blogger...

Happy New Year everyone! Hope you all had a good Christmas, can't believe it's over for another year!!

I thought I would start the year off with a guest blog from a friend of mine. I read this late last year and it really moved me. We forget that illnesses like MS take their toll not just on the person suffering but their loved ones too. Allison's mam suffers from MS and writing a rhyme helps her put her feelings down on a piece of paper. I asked Allison if i could post this as i really think it perfectly describes the illness.

So Allison, take it away... 

Every now and again I write a rhyme to put my feelings into words. I ramble on quite a bit in this one so well done to whoever makes it to the end. Here it is. I've named it as follows:

"The giving up kind"

I want to put into words how I'm feeling right now,
Sad, emotionally drained and sometimes feeling down.
I look around at others most or some around my age,
Who seem to have it all worked out on their Facebook page.
Laughing and happy with not a worry on their face,
But in real life we all know this is rarely the case.
Those smiles often hide the sadness of what's going on inside,
The emptiness and numbness of the pain we have to hide.

Why have I put my thoughts down why not keep them to myself?
Because people say "sharing may improve your mental health"
But if I speak out who will be there on the other side to listen
And respond with "I agree wholeheartedly with everything you've written"

Life can be shit and at times extremely cruel,
Daily torments that innocent people must live through and endure.
Sadly sickness and death surround us each and every day,
Along with poverty and the homeless struggling to survive another day.

My personal fight on a daily basis surrounds the illness of MS,
Or multiple sclerosis as it may be known to others best.
It's not myself who suffers with this sick illness from the devil,
But my mam my best friend who it continues to never let settle.
I've watched my mam continue to fight for her life every single day,
But the pain doesn't subside no matter how much I pray.
For those of you who don't know much about MS' evil face,
I'll tell you how it's goal is to take away your dignity and grace.
It's not a clear calendar that has a sequence of events,
And it does not show favouritism between ladies and gents.
Each person's journey is different and rarely do their symptoms appear the same,
But this is how I've viewed it from the sidelines of my mams torturous game.

First it was her eyes, a few blinding spots where she struggled to see
Pins and needles she started to feel throughout her whole body.
Next fatigue and spasms in her legs and also in her knee.
She visited the doctors to ask 'What is happening to me?'
At first no diagnosis came and she thought these symptoms must be in her mind,
Continuing to work and run a family saying "I'm not the giving up kind"

For years she carried on still not knowing what was causing all the pain,
She needed some answers and reluctantly visited the doctor again.
A diagnosis of MS was finally given but what exactly did that mean ?
It was very rarely spoken about and only occasionally it was seen.
So what is the treatment? surely with modern medicine there's bound to be a cure,
Unfortunately not for my mam so for years these symptoms she'll continue to endure.
As I mentioned earlier all people living with MS do not all present the same,
Don't take my words for gospel knowing all about this illness is not something I'd ever claim.

My mam is the greatest, so kind and would do anything for anyone
God, Why are you doing this, can you not see what she's become?
There are good days and there are bad but we've still managed to laugh til I have cried,
Reminiscing about the good old days and she even got to see me as a bride.
Its gruelling to watch my mam being overcome by this constant cruelty,
And witnessing it's impact on all the lovely members of my family.
I always have to tell myself that shes in the right place for her care,
And I do everything possible to make sure when she needs me I'm there.
I try not to let the sadness in her eyes upset me as I turn to walk away,
I always hug her and say I love you in case I don't get another day.
The guilt and sadness can sometimes overwhelm me and can make me feel distraught,
But I remind myself how strong my mam is and how hard she has always fought.
So everyday I go forward with this thought held firmly in my mind
I say to myself: You are your mother's daughter and you neither are "the giving up kind"

Thank you Allison for letting me share this with everyone.