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!