A Hair, Fashion & Lifestyle Blog - By Charleigh Victory

Friday, 9 February 2018

Multiple Scleroris | 3 Month Update



I thought I would update you on my diagnosis and what’s been going on with me since October 12th. I’ll try my best to make sense but I apologise in advance if it all comes out a bit mish-mash because that’s exactly how I’m feeling at the moment.
After I hit publish on my last post, telling you about my MRI results, I felt a sense of relief and I also felt very positive about the whole situation. I had so many beautiful messages from people who don’t know me personally but who took the time out to send such lovely and inspiring messages. That positive mind set lasted for a good month or so before my mental health deteriorated drastically and all these other emotions, such as anger, frustration and sadness came and hit me all at once. I think it’s because as soon as I was diagnosed, of course I cried for a few days or so but after that, I put on this brave face, like it hadn’t really bothered me.. which is far from the truth.

The treatment that I decided to go for is a Disease Modifying Drug called Tecfidera. You take it twice a day, with high fat content foods to reduce the number and severity of relapses. The most common side effects are flushing, (redness to the skin) stomach cramps, sickness and diarrhoea, which is why you take it with high fat content foods to combat sickness etc. If you follow my Instagram, I have documented my journey with MS on there and you will have seen that when I transitioned into week 3, I had a funny turn. Still to this day, we don’t know whether I had a bad reaction to the drug or I caught the Norovirus whilst being on the medication but basically, I had the most severe stomach cramps and sickness. The pain would wake me up in the middle of the night and it felt like I had been winded and a tennis ball was lodged underneath my rib cage. This lasted 5 days, over the Christmas period and I actually ended up in hospital on Christmas Eve. The doctor advised me to come off of Tecfidera until the pain and sickness had passed. As of right now, I’m not on any treatment for MS and I will start it again, on a low dosage at the end of January. Then I will know whether the severe stomach cramps were from the drug or from catching Norovirus. If it is Tec that’s causing me to be so sick, I don’t think it’s the treatment for me and I will unfortunately, have to change.

I was given very strong painkillers and made sure that I kept drinking water. I was so dehydrated in hospital, the doctor said if I didn’t start taking fluids by mouth, they would eventually have to put me on a drip. My stomach ache and sickness eventually stopped about 4 days after Christmas, so I was so bloody happy that I wasn’t going to be in any pain for New Years Eve. 

Urgh. 29th of December.. 

I woke up and had pains in my arms, an achey feeling which I knew was the MS and I tried to ignore it but it had put me in a really bad mood. It lasted practically all day but then I woke up on Saturday and the pain had gone. NYE came around and I deteriorated as the night progressed. The pain in my arms was so severe that it actually kept me up all night, I was laying in a hotel room in London thinking that I was going to have to call an ambulance. My arms went hot in places, they felt heavy, they burned, they ached.. it was awful. This pain lasted until the 2nd of January where I emailed my MS Nurse and explained that I think I could possibly be having a relapse or a flare. She rang me straight away and I burst into tears on the phone. I am just so sick of being in pain, the whole holiday season has been one thing after another and it’s discouraged me and completely thrown me. She told me that she needed to get in touch with the Neurologist and that she would then call me back. 

An hour had passed and she emailed me to tell me that the Neurologist wants to send me for an MRI on my neck. I’m guessing to see if there are any lesions on there? I’m not sure. Then on Wednesday 3rd of Jan, the X-Ray team rang me and said that my MRI was on Friday the 5th. I don’t know why but this time round, I felt very anxious and nervous. I’ve had an MRI before, I knew the procedure but I was petrified that they may find a lot more lesions or even worse.. something else. Friday came around and I had my MRI scan early morning, everything went fine but now I wait for the results..

The thing is with me, I’m a worrier and I suffer with anxiety. I cannot tell you what it’s like to go to bed at night with the anxiety and fear that I might not be able to move when I wake up in the morning or that my next relapse is going to end up putting me in hospital. I wish that I could of come back and told you that my treatment was going really well and that I’m feeling really positive and great but that isn’t what’s happening. As of right now, I feel sad and scared and I just can’t pretend that I’m okay anymore because I’m not. The only person that really see’s what I have to go through every day is my Mum and I’m so grateful she’s here with me, every step of the way. I am a huge believer in manifesting and ‘thoughts turn into things’ so as of right now, I’m going to keep telling myself that I WILL get through this, I feel NO pain and I am getting stronger every single day. 

So that’s it, that’s what’s been going on with me lately. I am sure that my 6 month update will be a lot more positive than this one and I will be able to tell you that I’m feeling right as rain. But as always, I wanted to keep it completely raw and real with you, no sugar coatings. 

Thanks so much for reading,

Love, Charleigh xo
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3 comments

  1. Thanks for sharing, you’re so brave. Hope you’re able to control this soon so that you’re no longer in pain xxx

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  2. It’s so brave of you to share your story like this! MS is an awful disease but every day will make you stronger and coping easier and you don’t definitely seem like one to let it control your life.
    My dad has MS also and i’d really like to recommend you look into dietary ways of treating it. There is a variety of evidence showing that diet can make big positive changes to the disease - and the sooner you implement it the sooner it helps. Look into the Swank diet and OMS diet. Also, perhaps see if there’s an MS support group near you!
    Wishing you so much luck on dealing with your diagnosis! x

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