Your disability is your superpower

 Now that Love Island is back on our screens, I thought it was an appropriate time to do a blog.. if you’re thinking of stopping here because you don’t watch it, fear not it’s not my view on the first episode…

This year they decided to announce there was a deaf contestant joining the villa. Many people like myself probably thought this is great news to bring in a more diverse cast. I wondered how they would tell other contestants, would they just know or would there be an announcement? Well last night, Tasha pulled all of them by the fire pit to tell them about it and described it as her ‘superpower’.

I loved how she did this, there was no shame towards it and you could tell she just wanted to get it out the way so that people didn’t ask questions or she felt uncomfortable. I loved her attitude towards it and I feel like it’s not something to be ashamed of, she seems to have such a positive attitude towards it. 

I’m always quite open with telling people about my MS when its appropriate. My life is slightly different than getting in a villa with a bunch of people but I think it’s important to tell people about disabilities so they can fully understand how it impacts your life. However I don’t pull people for chats around fire pits, more likely on a team call…

I assume they’ll be some conversations within the villa about her experience and people will want to learn more about it. I always like when people ask me about my MS, I don’t expect people to know, why would they? I’d rather get asked than them being scared to say the wrong thing.

All disabilities are different and I think if you’re quite positive about them you deal with it better generally. I sometimes forget I have MS unless my body reminds me about it. Your disability doesn’t define you and I’m excited to see how ITV adapt the show for Tasha. 

 

Starting a new job

Starting a new job can be daunting at the best of times especially when your new job is mainly working from home. It’s weird not being in an office all the time meeting people and having those random conversations you do with your new colleagues but it’s now the world we live in and a lot of people have done it over the last year too so I’m not alone. 

Starting a new job for me is exciting, I like a new challenge and to be out of my comfort zone, but I do always have in the back of my head, I’ll have to tell them I have MS and how do I do that. There’s enough stress starting thinking I hope my team like me/ I hope I’m doing a good job/ I hope I don’t make any mistakes without having to tell them you have MS. 

This time though it was weird because this blog was part of my application. As I work in PR and marketing it made sense to include my blog as evidence of my writing so in one way I didn’t actually have to have that difficult conversation with my manager. 

It was a good way to then start the conversation and I feel like it took the pressure off. Since starting the job I’ve spoke about it when I’ve needed to but not all my team know yet - not because I’m scared I just haven’t been in a situation to tell them. I don’t want to just blurt it out for no reason. 

However I feel really comfortable around them as they’ve made me so welcome and it’s a place of work where there’s no judgement. There’s a group called visABLE which is there for anyone that has a disability in the work place. I thought it would be good group to join as I thought it might help people sharing my story. 

Im looking forward to getting involved in the group and 10 years ago when I was first diagnosed I would have never put myself out there like that but as I’ve got older I’ve realised the more I put myself out there, the more I can help others too.

My second GNR

Last weekend I took part in my second Great North Run. I decided when I signed up not to run for charity as I thought the pressure to give this year would be more than normal after Covid and I wanted to do it for myself; I had done a lot of running in lockdown so wanted to beat my time from four years ago as I was a lot fitter and was getting better at running.

However last years race was postponed so this year I was not prepared, me and my boyfriend have just refurbished our new house, I’ve had a busy summer plus the fact I haven’t been too well the last six months, so I wasn’t in a position to run a fast time like I thought the year before. 

As you all know from reading this blog, my MS treatment had an effect on my thyroid and I have an overactive one which has really has an effect recently.

 I’ve lost 1 and a half stone, been constantly tired and had some visible effects from it. It is a side effect I have to live with which is better than waking up with MS symptoms, but it really took it out of me. Some days I couldn’t be bothered to even interact with people, and I would fall asleep as soon as I was lying down, which normally isn’t the case since I’m quite a hyper, sociable person.  

It was also making me not want to run as I was scared, I wasn’t going to run far, my motivation was from 100 to zero.

So I was starting to get anxious about the run as I’m quite a competitive person and I knew I wasn’t going to do as well as I thought I would so on Thursday (four days before the event) I decided to set up a Just Giving page to raise money for the MS Trust and I am so glad I did! 

I’ve doubled my target already and I really felt like I had a purpose running. Just want to say thank you to everyone has supported me.

I also knocked 2 minutes off my last time, so I did better than I thought. But I am determined to knock more time off so it won’t be my last GNR.

Thank you to everyone who donated and if you want to just go on my Just Giving page x

 

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.

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.

My MS nurse...

I thought on this post I would talk about my MS nurse, well my previous nurse who has recently retired.

From the age of 18, she has always been my first point of contact and until last month I seen her at least every three months. There’s no other way to describe Barbara (my nurse if you didn’t guess that) than a straight to point, assertive and a ‘hard as nails’ nurse. I would go in for a check-up and before I know it, my next appointment was booked, my MRI was checked, and I was getting my bloods taken. She was always on the ball sometimes before I even sat down.

She was not your typical nurse though. She was ex-army and you can definitely tell… She was determined to make sure MS was not a hindrance on anyone’s life and she made me believe I could fight it from day one - her patients were her main priority.

I think I was one of her youngest patients, so I always felt she wanted me on the best treatment to make sure I could live like a normal person my age. The first day I met her she said I promise you this will not affect your life, we will continuously find the best treatment for you.

So far, she’s been right, as I’ve explained in previous blogs, I’m really lucky to only have had four main relapses and that is thanks to the continued support of Barbara and the rest of the team at Sunderland Royal.

I’ve always found it useful to have a point of contact like that as when you go to the Doctors, they aren’t specialists, so they don’t really know what you’re going through but you can mention one problem to your MS nurse and they’ll explain why that is happening.

Before Barbara retired, I went to see her for my last appointment and to say my thanks and farewells. I bought her a present to say thank you for everything she has done, and anyone who knows or has heard me talk about Barbara would know she’s not the softest, but I seen the real caring side of her when she actually got tearful and said she can retire happy knowing that she has helped me live a better life over the last six years.

Anyone who knows me knows that I was obviously an emotional mess at this point…  

After all the years, Barbara worked for the NHS I hope she’s enjoying her retirement because she deserves it so much. I meet my new nurse next month and I’m sure she’ll be as good – wish me luck!

If anyone else has had a similar relationship with their nurse or doctor, please let me know. You always read the negative stories about the NHS but really without these people we wouldn’t have a free amazing health service so it’s nice to thank them for their hard work and appreciate them whenever we can.

Dealing with Multiple Sclerosis and relapses...

There’s many types of MS - primary-progressive, secondary-progressive and relapsing remitting. I have relapsing remitting which means I suffer from relapses.

 A relapse is defined by healthcare professionals as - Old symptoms of MS worsening or new symptoms appearing.

Instead of depressing you on how tough a relapse is, I’ll tell you some of the funny stories from some incidents that have happened when I’ve had a relapse. 

I’ve had four main relapses so far – two before I was diagnosed and two after. When I was 16, I lost the feeling in both of my legs, I couldn’t walk properly, and I would get a pins and needles sensation. At this point I didn’t know what was going on so didn’t really know what to do. One day I was at church and I had to go up to the alter because I was making my confirmation that year. I got all the way down to the bottom and looked at my feet and realised I only had one shoe on… Tip number 1 never wear little ballet pumps when you can’t feel your feet, they won’t stay on!

Then a couple of weeks later, I still couldn’t feel my legs when we went to Light Water Valley. First ride we went on was the Ultimate and as it started it broke down! We got passes to go on later in the day when it was fixed so me and one of the girls decided to go on before we left the park. The bus was leaving in 15 minutes, but we thought we’d have enough time… we did not have enough time and ended up running back to the bus - well she ran I had to walk extremely fast and it looked like my legs were about to fall off! Tip number 2 don’t run across a theme park when you can’t even walk!

Then when I was 18, I lost the feelings in my arms and my hands were crippled, I couldn’t hold things, write or type. We went to the Ice Bar while we were in London, we decided to get a cocktail each which wasn’t the cheapest drink I’ve ever bought but guess who dropped it all over – yes me! Tip number 3 never buy expensive drinks when you can’t hold them!

Then earlier this year my old relapses came back when I was changing treatments. I lost the feeling in my right hand and my left leg went. At the time me and my boyfriend were on holiday in Texas so this stopped us walking up the Enchanted Rock – I think he was secretly quite happy about that though! The relapse got worse as the holiday went on and I would get a spasm every so often when I was sleeping and would either kick him or throw the quilt off him. I don’t really have a tip for this one except tell your boyfriend to stay in a different bed when you lose the feeling in your leg.

Although relapses are hard to deal with, I always think it’s best to make the best of a bad situation and laughing at yourself always helps!  

It’s okay not to be okay…

Today is #WorldMentalHealthDay something until recently has never been a big thing. I think in the past, people have never realised how important it is - I'll admit I was one of those people...

But when I relapsed earlier this year I realised ‘wow shit’ this mental health malarkey can really affect people, and this is when I realised it’s just as important as your physical health.

I was angry and upset, I didn’t realise at the time, but I was a mess. I didn’t want to get dressed up, I wasn’t bothered about talking to people, I was getting angry over stupid things and I was generally down, but I was trying to be strong so I would never admit that I was struggling.

Then one day I woke up and felt a lot more positive than I had been, so as pathetic as it sounds, I washed my hair put some tan and make up on and went out for a walk with two of my best friends - the littlest thing made me feel 1000 times better. 

You’re not always going to be smiling, even if you’re the richest person in the world but I think it’s important to realise how you feel/act when you’re not okay. I get angry, I go quiet (which is very unusual if you know me) I get upset to the point where someone could say something to me and I would burst into tears. This is when I know I need to take myself away from a situation and do something  I enjoy – the gym is probably my go to place when I feel down.

I’ve always been quite a positive/optimistic person, even when I was diagnosed with MS, I didn’t really think too much into it but at the time I was young and had other things to think of. 2018 has really been an eye opening to me and I’ve now realised just because someone has a smile on their face, doesn’t always mean they are in a good place!

Whether it's a relative, a friend, a GP or a charity like M.I.N.D, there's always someone to talk to even when you think there's not. 

Remember mental health is just as important as your physical health and it’s okay not to be okay - be kind to people because you don't know what's going on behind that smile! 

The hangover with MS

I thought this would be a good day to write a blog about hangovers since most of us might be feeling a bit rough today. 

We all get a hangover after a heavy night, whether we’re sick or our head is banging or we have a funny tummy - our bodies naturally don’t cope well with a lot of alcohol. 

Since I started drinking, I’ve always had bad hangovers but over the last year they have got a lot worse since I’ve been on a new treatment. I usually get a really sore head, tingling sensations through my body  and get extremely tired. However I can’t completely blame this on my MS as it’s just one of those things when you have a lot to drink and are dehydrated. 

Recently I have started to get water infections the day after as my body is still dehydrated from the night before. Those who have had water infections will know how annoying and uncomfortable they are. The niggling pain starts to burn and then it’s the constant running to the toilet although you don’t need it. 

ANNOYING

Still working on why this happens every time I have a drink, whether it’s related to my treatment or I am just prone to water infections but hopefully i can get something that can help with the pain. Either that or I’ll just have to stop drinking... 

I mean if anyone knows me well they know I won’t stop drinking haha!  

My top tips are eat something so there’s something on your stomach. Drink plenty of water and have a nice hot bath and put some never pjs on and get someone to give you sympathy- that always helps! 

I think the best thing to do when you’re hungover is know that you’re allowed to rest and have a lazy day.

I’d love to hear from anyone else with MS and how they cope with hangovers and drinking 😊

Telling people you have MS

I hate telling people I have MS. Not because I’m embarrassed, or I want to hide it, it’s just hard to explain to somebody who doesn’t know much about it. People have perceptions of MS and the reaction you normally get from someone when you tell them is:

• But you’re not in a wheelchair…
• I would have never have guessed, you look fine (looks you up and down)
• I thought only old people got MS

If anything, it’s more of an awkward conversation and no matter how much you explain it, only other people with MS will really know how you’re truly feeling - just like any illness, I can be as sympathetic as possible towards someone who has broken their leg but I’ve never experienced myself so I don’t really know what they’re going through.

When I was first diagnosed my nurse told me ‘you don’t have to tell anyone you have it if you don’t want to’ so stuck to that for a while in exception to my close friends and family. But last year I started seeing a boy who I was starting to really like. It was at the same time as I was running the GNR for The MS Society so I felt it was a good time to tell him. It was at a good stage in our relationship where I would understand if he wanted to walk away at that point, but at the same time I would have been gutted if he had.

Of course, he didn’t and we’re celebrating our first-year anniversary this weekend and I couldn’t have asked for a more supportive boyfriend – cheesy!

I’m lucky enough to have a group of supportive friends and family who are always there if I need to talk. However, I tend to not bring my MS up with them that often as I don’t want sympathy from anyone -but I do think it’s important to tell people how you feel.  

I suffered a relapse earlier this year which meant I couldn’t drive, type or answer the phone properly at work. Someone then told me about a scheme called access to work who assess your working environment. This meant that I was able to get the support I needed. A few years back I wouldn’t have admitted I needed help but as I’ve grew older I’ve realised people are there to help you, like you’re there to help them if they need it.

My point is, as it becomes more and more common with younger people, we must take advantage of the people around us as those are the people who will help you stay sane!