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On the 8th of April, I had my second round of Lemtrada for my Multiple Sclerosis . This involved me going into hospital for 3 days to h... -
Rice water is a hair treatment that has been going on for decades, yet I've only just recently found out about it.. lol, love th... -
(This post includes Affiliate Links, when you click the name of the product) My makeup routine has slightly changed recently. After sp... -
The best thing about running my blog is being able to talk about my own experiences and the things I deal with on a day to day basis. ... -
this post contains affiliate links I decided, well, actually my MS nurse decided that it would be best for me to talk to someone abo...
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A question that I get asked religiously over on my Instagram is "What does MS feel like?" or "What kind of pain is it?&qu... -
I have always been quite a sick child for as long as I can remember. I would catch every cold, every flu and every tummy bug going....
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Well, technically it's been 1 year and 2 months because it's taken me so bloody long to write this post but here we are. Hello,... -
Seven months since my last attack. It has been seven months since I had further damage to my brain and spinal chord. Seven months ... -
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 a...
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I decided,
well, actually my MS nurse decided that it would be best for me to talk to someone about how Multiple Sclerosis is currently affecting me mentally, not just physically. I jumped at the chance because I'm not afraid to admit that my mental health and anxiety have suffered greatly since being diagnosed (I touched on that a little here). So that's where we're at now.
First of all, the lady I go to see is called Emma and she specialises in Multiple Sclerosis therapy and my god.. she's an angel.
So there I was, waiting outside of the room, watching other patients walk past me. (Oh btw, my counselling is inside of the hospital that I go to for my monthly checks) and then Emma came out of her room to get me. I was a little bit nervous but I felt relieved that someone was going to finally listen to all of my thoughts, instead of me listening to other people's. I sat down and cried instantly. She asked me straight up "So.. what's causing you to be so anxious?" and everything came out like word vomit. I explained that I was worried about the uncertainty of the disease and whether I was going to deteriorate as time goes on. I also told her about the Selma Blair Interview that I had watched the night before and how her's had got so progressive that she now needed a walking aid and can barely even speak. I also mentioned that I'm constantly worried about whether I'll wake up and be able to move in the morning or not. Emma then began to reassure me that the treatment that I've had is fantastic and that it has helped thousands of people live a normal life. She said even though it is a progressive disease and it's completely unpredictable, I need to try and put all faith in the fact that this is going to work and my relapses will slow down.
Emma spoke about the fact that I'm going through a grieving process and it's like I'm grieving the person I used to be because MS was not in my life plan. She said "You never thought you were going to go to school, study all of those years, go to college, work and then be hit with an incurable illness" and she's right. I never in a million years thought that this would or could ever happen to me but it has. I guess I'm still healing but I don't know how long it's going to take and I think that's what I'm most frustrated about. We then spoke about the guilt that comes along with being sick and she asked me how would I react if my friends told me they had been diagnosed with a chronic illness? I said that I would be supportive, caring and everything that my friends are to me and then she said "Exactly, so why would you feel guilty for being the sick one?”
I didn't have an answer.
First of all, the lady I go to see is called Emma and she specialises in Multiple Sclerosis therapy and my god.. she's an angel.
So there I was, waiting outside of the room, watching other patients walk past me. (Oh btw, my counselling is inside of the hospital that I go to for my monthly checks) and then Emma came out of her room to get me. I was a little bit nervous but I felt relieved that someone was going to finally listen to all of my thoughts, instead of me listening to other people's. I sat down and cried instantly. She asked me straight up "So.. what's causing you to be so anxious?" and everything came out like word vomit. I explained that I was worried about the uncertainty of the disease and whether I was going to deteriorate as time goes on. I also told her about the Selma Blair Interview that I had watched the night before and how her's had got so progressive that she now needed a walking aid and can barely even speak. I also mentioned that I'm constantly worried about whether I'll wake up and be able to move in the morning or not. Emma then began to reassure me that the treatment that I've had is fantastic and that it has helped thousands of people live a normal life. She said even though it is a progressive disease and it's completely unpredictable, I need to try and put all faith in the fact that this is going to work and my relapses will slow down.
Emma spoke about the fact that I'm going through a grieving process and it's like I'm grieving the person I used to be because MS was not in my life plan. She said "You never thought you were going to go to school, study all of those years, go to college, work and then be hit with an incurable illness" and she's right. I never in a million years thought that this would or could ever happen to me but it has. I guess I'm still healing but I don't know how long it's going to take and I think that's what I'm most frustrated about. We then spoke about the guilt that comes along with being sick and she asked me how would I react if my friends told me they had been diagnosed with a chronic illness? I said that I would be supportive, caring and everything that my friends are to me and then she said "Exactly, so why would you feel guilty for being the sick one?”
I didn't have an answer.
I just guess that when it’s YOU that’s going through something, you only ever really see it from your own point of view. Not from the eyes of your friends or your family. For a while, I had gotten so caught up on worrying about whether I am a burden to other people, I forgot that if it was the other way round, I would 100% be there for those that needed me. Just like my friends, my real friends. We then began talking about coping mechanisms and what I can do to help relieve some of the current stress and worries that I had. I told her about my blog and that I like to document my journey online - she told me that she thought it was fantastic because I’m the ‘perfect patient’. She began to explain that although the nurses and the doctors can educate people about Multiple Sclerosis because they’ve studied it, I’m actually a real life patient that is going through it. She said “We don’t have MS.. but you do, so the words that you speak, offer way more meaning than anything I or your doctors could ever say”. And I completely agree.
I actually get annoyed by this quite often. Sometimes when I don’t feel like certain doctors are listening to me, my first reaction is “Well, you’re not even sick, so how you would you know?” and sometimes I truly believe that they don’t know. They have no idea what it’s like to live with MS or any type of chronic illness, so I hear what they say but I sometimes choose not to listen. This also stems from the fact, I went to my doctors surgery 18 times before I got a diagnosis and it was actually the opticians that sent me to the hospital, not my GP.
Emma then began listing all the great qualities about myself, all the things I already knew but managed to forget which obviously made me cry, like a baby, again. To be honest, the whole hour was spent sobbing into a pack of tissues whilst being told to "breathe" over and over. I also told Emma that even though I've had Lemtrada and will probably choose DMD's (disease modifying drugs) again in the future, I still want to go down the holistic route and try to help myself as much as I can with my diet and the environment around me. I wrote an Instagram post and spoke about the "Wahls Protocol" which is about how you can heal/reverse your illness. I said that there are 15 million people in England that have a Chronic Illness, so we must be doing something wrong. People are getting sicker as time goes on and the medicine that the doctors give us, aren't always helping. We need to resolve the root cause of our illness's, rather than suppressing our symptoms. If we only treat symptoms, then we'll always have a cause. So that's what I'm doing now, focusing on eating foods that fuel me, are good for my body and being mindful. You have two homes, earth and your body.. take care of them.
After my first session, I felt like I could breathe again. I felt like I weren't alone in my thoughts anymore and most importantly, I had faith that everything will work out in the end. So thanks, Emma for lighting the way and giving me back a ray of hope.
Have YOU ever been to therapy for your chronic illness? If so, did it help?
Charleigh
x
I HAD THERAPY FOR MS & THIS IS WHAT HAPPENED
this post contains affiliate links
I decided,
well, actually my MS nurse decided that it would be best for me to talk to someone about how Multiple Sclerosis is currently affecting me mentally, not just physically. I jumped at the chance because I'm not afraid to admit that my mental health and anxiety have suffered greatly since being diagnosed (I touched on that a little here). So that's where we're at now.
First of all, the lady I go to see is called Emma and she specialises in Multiple Sclerosis therapy and my god.. she's an angel.
So there I was, waiting outside of the room, watching other patients walk past me. (Oh btw, my counselling is inside of the hospital that I go to for my monthly checks) and then Emma came out of her room to get me. I was a little bit nervous but I felt relieved that someone was going to finally listen to all of my thoughts, instead of me listening to other people's. I sat down and cried instantly. She asked me straight up "So.. what's causing you to be so anxious?" and everything came out like word vomit. I explained that I was worried about the uncertainty of the disease and whether I was going to deteriorate as time goes on. I also told her about the Selma Blair Interview that I had watched the night before and how her's had got so progressive that she now needed a walking aid and can barely even speak. I also mentioned that I'm constantly worried about whether I'll wake up and be able to move in the morning or not. Emma then began to reassure me that the treatment that I've had is fantastic and that it has helped thousands of people live a normal life. She said even though it is a progressive disease and it's completely unpredictable, I need to try and put all faith in the fact that this is going to work and my relapses will slow down.
Emma spoke about the fact that I'm going through a grieving process and it's like I'm grieving the person I used to be because MS was not in my life plan. She said "You never thought you were going to go to school, study all of those years, go to college, work and then be hit with an incurable illness" and she's right. I never in a million years thought that this would or could ever happen to me but it has. I guess I'm still healing but I don't know how long it's going to take and I think that's what I'm most frustrated about. We then spoke about the guilt that comes along with being sick and she asked me how would I react if my friends told me they had been diagnosed with a chronic illness? I said that I would be supportive, caring and everything that my friends are to me and then she said "Exactly, so why would you feel guilty for being the sick one?”
I didn't have an answer.
First of all, the lady I go to see is called Emma and she specialises in Multiple Sclerosis therapy and my god.. she's an angel.
So there I was, waiting outside of the room, watching other patients walk past me. (Oh btw, my counselling is inside of the hospital that I go to for my monthly checks) and then Emma came out of her room to get me. I was a little bit nervous but I felt relieved that someone was going to finally listen to all of my thoughts, instead of me listening to other people's. I sat down and cried instantly. She asked me straight up "So.. what's causing you to be so anxious?" and everything came out like word vomit. I explained that I was worried about the uncertainty of the disease and whether I was going to deteriorate as time goes on. I also told her about the Selma Blair Interview that I had watched the night before and how her's had got so progressive that she now needed a walking aid and can barely even speak. I also mentioned that I'm constantly worried about whether I'll wake up and be able to move in the morning or not. Emma then began to reassure me that the treatment that I've had is fantastic and that it has helped thousands of people live a normal life. She said even though it is a progressive disease and it's completely unpredictable, I need to try and put all faith in the fact that this is going to work and my relapses will slow down.
Emma spoke about the fact that I'm going through a grieving process and it's like I'm grieving the person I used to be because MS was not in my life plan. She said "You never thought you were going to go to school, study all of those years, go to college, work and then be hit with an incurable illness" and she's right. I never in a million years thought that this would or could ever happen to me but it has. I guess I'm still healing but I don't know how long it's going to take and I think that's what I'm most frustrated about. We then spoke about the guilt that comes along with being sick and she asked me how would I react if my friends told me they had been diagnosed with a chronic illness? I said that I would be supportive, caring and everything that my friends are to me and then she said "Exactly, so why would you feel guilty for being the sick one?”
I didn't have an answer.
I just guess that when it’s YOU that’s going through something, you only ever really see it from your own point of view. Not from the eyes of your friends or your family. For a while, I had gotten so caught up on worrying about whether I am a burden to other people, I forgot that if it was the other way round, I would 100% be there for those that needed me. Just like my friends, my real friends. We then began talking about coping mechanisms and what I can do to help relieve some of the current stress and worries that I had. I told her about my blog and that I like to document my journey online - she told me that she thought it was fantastic because I’m the ‘perfect patient’. She began to explain that although the nurses and the doctors can educate people about Multiple Sclerosis because they’ve studied it, I’m actually a real life patient that is going through it. She said “We don’t have MS.. but you do, so the words that you speak, offer way more meaning than anything I or your doctors could ever say”. And I completely agree.
I actually get annoyed by this quite often. Sometimes when I don’t feel like certain doctors are listening to me, my first reaction is “Well, you’re not even sick, so how you would you know?” and sometimes I truly believe that they don’t know. They have no idea what it’s like to live with MS or any type of chronic illness, so I hear what they say but I sometimes choose not to listen. This also stems from the fact, I went to my doctors surgery 18 times before I got a diagnosis and it was actually the opticians that sent me to the hospital, not my GP.
Emma then began listing all the great qualities about myself, all the things I already knew but managed to forget which obviously made me cry, like a baby, again. To be honest, the whole hour was spent sobbing into a pack of tissues whilst being told to "breathe" over and over. I also told Emma that even though I've had Lemtrada and will probably choose DMD's (disease modifying drugs) again in the future, I still want to go down the holistic route and try to help myself as much as I can with my diet and the environment around me. I wrote an Instagram post and spoke about the "Wahls Protocol" which is about how you can heal/reverse your illness. I said that there are 15 million people in England that have a Chronic Illness, so we must be doing something wrong. People are getting sicker as time goes on and the medicine that the doctors give us, aren't always helping. We need to resolve the root cause of our illness's, rather than suppressing our symptoms. If we only treat symptoms, then we'll always have a cause. So that's what I'm doing now, focusing on eating foods that fuel me, are good for my body and being mindful. You have two homes, earth and your body.. take care of them.
After my first session, I felt like I could breathe again. I felt like I weren't alone in my thoughts anymore and most importantly, I had faith that everything will work out in the end. So thanks, Emma for lighting the way and giving me back a ray of hope.
Have YOU ever been to therapy for your chronic illness? If so, did it help?
Charleigh
x
(This post includes Affiliate Links, when you click the name of the product)
My makeup routine has slightly changed recently. After spending about 6 weeks in total, wearing absolutely no makeup at all, I was extremely excited to put a full face on, only to want to take it all off less than two hours later. If I'm honest, I absolutely hate the feeling of a heavy foundation on my skin, especially as the weather has been getting warmer, it literally just melts off my face. I'm not the greatest at makeup anyways and I never find or try out new products, I'm just a bit boring when it comes to that. Once I've found a product that I really love and that works for me, I tend to just stick with it for as long as I can.
That being said, here is what I've been using on my face recently.
Foundation / The Ordinary Serum
I've been using this now for around 7 months and it is my current favourite foundation. I LOVE that it's light and natural, it doesn't feel too heavy on the skin and it kind of reminds me of a tinted moisturiser. It is so easy to blend because it just glides over the skin and it also has SPF 15 in it too so.. bonus! OH.. and did I mention, It's under £6?! 10/10 recommend.
Concealer / Maybelline Eraser
This has been a staple in my makeup bag for SO long, I couldn't even tell you how many years I've owned this for. I've tried other concealers but I always go back to this one and the Collection 2000. The reason I love this one so much though, is because it's the easiest thing to apply! You turn the applicator, which is like a small sponge and it glides over your under eyes. Perfect.
Powder / Rimmel Stay Matte
Again, another item that I've had in my makeup drawer/bag for years and years. I prefer a Matte finish because in this heat, I sweat like a b*tch, so I always set my makeup with a matte powder. It's just what works best for me.
Blush / HD Brows Blush in Punch
A few weeks back, I cleared out my beauty desk and found this bad boy. It was brand new, hadn't been opened, I gave it a whirl and haven't looked back since. I used to never wear blusher, I didn't think it was popular anymore and that no one wore it. I couldn't of been more wrong and I personally believe it can take your face makeup to a whole new level, when applied correctly.
Bronzer / Benefit Hoola in Caramel
THE. BEST. BRONZER. I'VE. USED. Honestly, you just have to try it for yourself! You will glow to the gods.
Mascara / Curling Mascara with 25% off AD
This is the Mascara from the beauty company I am partnered with and I use it every single time I do my makeup. The curling wand enhances the lashes and lifts them up, which creates a 'false' look. And because I don't wear eyeliner in the day anymore, I love how much the mascara widens my eyes.
Highlighter / MAC SkinFinish in Soft & Gentle
Another classic and it last's foreverrrr. I put this on the top of my cheekbones, the top of the bridge on my nose, the end of my nose, my cupids bow and occasionally on my chin/forehead. If this ever got discontinued, in truly Charleigh style.. I would flip a table.
Lips / I alternate between a Red Lip - MAC Ruby Woo & A Kate Moss Nude
Finishing off with:
- Mario Badescu / Rose Water - This is infused with Aloe herbs and natural Rose Water. It refreshes the skin whilst hydrating it at the same time, I've used this for over 2 years and it works brilliantly.
- Urban Decay - Setting Spray - I think you would all agree that this is probably the best setting spray to use. It keeps your makeup in place for hours on end and it doesn't settle into fine lines or glides around the skin. It just stays put and It's everything you would want a setting spray to be.
And that is pretty much everything that I've been using on my face for the last 4 weeks or so and..I like it. Of course it's probably going to change over time again and I'm more than likely going to stop using foundation all together in the summer, just like I do every year. You know when you're so tanned and glowy that there is no need to wear layers of foundation? Yeah, that's what I'm looking forward to. Also, if you have any recommendations on what is good right now and a must have in my makeup bag, then let me know!
Love, Charleigh xo
MY CURRENT GO TO MAKEUP
(This post includes Affiliate Links, when you click the name of the product)
My makeup routine has slightly changed recently. After spending about 6 weeks in total, wearing absolutely no makeup at all, I was extremely excited to put a full face on, only to want to take it all off less than two hours later. If I'm honest, I absolutely hate the feeling of a heavy foundation on my skin, especially as the weather has been getting warmer, it literally just melts off my face. I'm not the greatest at makeup anyways and I never find or try out new products, I'm just a bit boring when it comes to that. Once I've found a product that I really love and that works for me, I tend to just stick with it for as long as I can.
That being said, here is what I've been using on my face recently.
Foundation / The Ordinary Serum
I've been using this now for around 7 months and it is my current favourite foundation. I LOVE that it's light and natural, it doesn't feel too heavy on the skin and it kind of reminds me of a tinted moisturiser. It is so easy to blend because it just glides over the skin and it also has SPF 15 in it too so.. bonus! OH.. and did I mention, It's under £6?! 10/10 recommend.
Concealer / Maybelline Eraser
This has been a staple in my makeup bag for SO long, I couldn't even tell you how many years I've owned this for. I've tried other concealers but I always go back to this one and the Collection 2000. The reason I love this one so much though, is because it's the easiest thing to apply! You turn the applicator, which is like a small sponge and it glides over your under eyes. Perfect.
Powder / Rimmel Stay Matte
Again, another item that I've had in my makeup drawer/bag for years and years. I prefer a Matte finish because in this heat, I sweat like a b*tch, so I always set my makeup with a matte powder. It's just what works best for me.
Blush / HD Brows Blush in Punch
A few weeks back, I cleared out my beauty desk and found this bad boy. It was brand new, hadn't been opened, I gave it a whirl and haven't looked back since. I used to never wear blusher, I didn't think it was popular anymore and that no one wore it. I couldn't of been more wrong and I personally believe it can take your face makeup to a whole new level, when applied correctly.
Bronzer / Benefit Hoola in Caramel
THE. BEST. BRONZER. I'VE. USED. Honestly, you just have to try it for yourself! You will glow to the gods.
Mascara / Curling Mascara with 25% off AD
This is the Mascara from the beauty company I am partnered with and I use it every single time I do my makeup. The curling wand enhances the lashes and lifts them up, which creates a 'false' look. And because I don't wear eyeliner in the day anymore, I love how much the mascara widens my eyes.
Highlighter / MAC SkinFinish in Soft & Gentle
Another classic and it last's foreverrrr. I put this on the top of my cheekbones, the top of the bridge on my nose, the end of my nose, my cupids bow and occasionally on my chin/forehead. If this ever got discontinued, in truly Charleigh style.. I would flip a table.
Lips / I alternate between a Red Lip - MAC Ruby Woo & A Kate Moss Nude
Finishing off with:
- Mario Badescu / Rose Water - This is infused with Aloe herbs and natural Rose Water. It refreshes the skin whilst hydrating it at the same time, I've used this for over 2 years and it works brilliantly.
- Urban Decay - Setting Spray - I think you would all agree that this is probably the best setting spray to use. It keeps your makeup in place for hours on end and it doesn't settle into fine lines or glides around the skin. It just stays put and It's everything you would want a setting spray to be.
And that is pretty much everything that I've been using on my face for the last 4 weeks or so and..I like it. Of course it's probably going to change over time again and I'm more than likely going to stop using foundation all together in the summer, just like I do every year. You know when you're so tanned and glowy that there is no need to wear layers of foundation? Yeah, that's what I'm looking forward to. Also, if you have any recommendations on what is good right now and a must have in my makeup bag, then let me know!
Love, Charleigh xo
My first observation showed that I had a temperature, so they stopped the infusion for half an hour. My 4th observation showed my heart rate was above normal. A normal heart rate is between 60-90bpm and mine was 142. Throughout the day, my heart rate was going up and down but nowhere near where it should be. Kerry kept telling me to be calm, relax, think happy thoughts and all of that but honestly, I felt fine. I had my Mum by my side the whole time and I wasn't worrying about anything but I know subconsciously you can worry! So I laid back in my chair and tried to relax as much as possible. Time went on and my heart rate was still going up and then down and then back up again. So I actually ended up having an ECG which came back fine apart from it showed how fast my heart was racing. I think I left the hospital that day on a heart rate of 113.
Tuesday came around and when I had my first observation, It showed that my heart rate was already at 137, so my new nurse Veronica (again, absolute babe with the kindest heart) refused to do the infusion. She rang my MS nurse who also thought it wasn't a good idea to continue, with my heart rate being so high before the steroids OR Lemtrada. At this point, we were waiting for my Neurologist to give an answer as to whether he thought we should continue. After all, he knows best. After 30 minutes or so, we got the call to say that he thinks it's fine to continue and that's what we did.
My final day of treatment was Wednesday. One final push and then it was time for recovery. I was exhausted this day and really ready for it to be over. It's really hard to describe how Lemtrada makes you feel but besides the burning itch from the hives it gives you, it makes you feel drained, tired, exhausted and sluggish. Have you ever been in a position where you've had to put poison in your body, to make your life a bit more bearable? But because of the hideous side effects, (including a brain infection which can lead to death) you've had to sign a contract to basically say "Hey, even if I die, my family can't sue you"?
When I came home, that's when I had to change my routine slightly. I follow a strict diet to make sure I don't catch listeria whilst in recovery. I can't be around small kids, babies or anyone who's sick. I also have to take anti-viral medication for 28 days. This is because Lemtrada destroys your T cells, B cells which are your lymphocytes and your white blood cells. Basically... my immune system is at 0.
Four days after coming out of hospital, I started to develop chest pains. A pain right in the middle of my chest which felt like a sharp burn, a bit like indigestion or heart burn. I took Rennie tablets, I drank Gaviscon out of the bottle and even drank cows milk (I don't usually drink it) to try and help any acid that I may of had in my tummy, causing the indigestion. None of these helped and the pain started to spread down my arms, around my back and also up my neck. I knew at this point that this wasn't indigestion. I was in so much pain that I was googling ways to help chest pain and it came up with "How to tell the difference between heart burn and a heart attack".
I knew that was a bit far fetched because c'mon.. I'm 23! I couldn't possibly be having a heart attack. But then I clicked the article anyways and my heart sank a little when it said that heart burn doesn't spread to any other places in your body but a heart attack pain can spread to your arms, your back and your neck. I was in and out of two minds, thinking of course I haven't had a heart attack but also thinking.. "Shit, maybe I have". I ended up emailing my nurse because the pain was getting too much and obviously, I had just had Lemtrada, so maybe it was something to do with that. I woke up in the morning to an email, a text message, a missed call and a voice message from my MS Nurse. The email said "I'm not sure whether the pain is on going but if it is, you need to call 999." I texted her and said that the pain had calmed down but I explained how bad it was, that it spread to other places and how I was feeling very faint and nauseous. She rang me straight away and said that a new warning had come out about Lemtrada, on Friday (3 days before this call) about it causing potential cardiac problems and that I needed to be seen by a doctor today. I rang my step-dad in hysterics and within 10 minutes, he had called me back and said "We're on our way". Less than an hour later, I was sat in isolation in the minor injuries unit at my local hospital, waiting to be seen. We were told that there was a 4 hour wait but I was seen within 20 minutes.
At this point, I had been taking Beta Blockers for about 7 days now and couldn't feel a difference. I was still dizzy whenever I stood up, I was still nauseous but unfortunately now, I couldn't walk up the stairs. It was like my legs were stuck in quick mud, I didn't have any pain with it though.. I just couldn't move. I began researching my symptoms and an Overactive Thyroid came up, that's when I knew I had it. With Lemtrada, 1 in 10 people get a thyroid problem. It is very common but I honestly thought I would never get it. I had 12 months of perfect blood results (I get checked every month) but between my last check up which was early March and when I started Lemtrada (early April), something had gone wrong. My legs had been shaking like a leaf since March 31st and I have been sweating uncontrollably since that day too. I also went to the Zoo in 8 degree weather and was dripping! I remember thinking "What the fuck is going on"?
Now I know why.
Now I know why my legs were shaking so much in hospital. Now I know why I'm sweating and losing a lot of weight. Now I know why I have tremors in my hands, legs and feet. Now I know why I'm dizzy standing up. Now I know why I've got a lump in my neck. Now I know why my heart rate reached 200bpm.
On the 29th of April 2019, I was diagnosed with Graves Disease, which has caused my Overactive Thyroid - all because of Lemtrada.
I messaged my nurse on the week of the 22nd.. and told her that I know I've got an Overactive Thyroid and she got me an appointment with my neurologist the week after. However, I had to go and have my bloods done beforehand and I was told they were testing me for Graves. My blood tests came back and showed that I did in fact have Graves Disease. They also showed a possible blood clot again, just like a few weeks ago. My neurologist asked me to stick my arms out, which I did and all you could see were my hands shaking, bouncing up and down and completely out of my control. I was told I would be referred to an Endocrinologist but I am still waiting for that. I went for another blood test last Friday, to confirm whether I had a blood clot or not but I haven't had my results yet.
My current situation is exactly the same apart from my muscle weakness in my legs are a lot worse. I now have to bum shuffle (lol) up the stairs and I walk a little bit funny. So now I have two auto-immune disease, both incurable and both attack my immune system. My MS attacks my brain and spinal chord and my Grave's attacks my thyroid. Life is really tough at the moment and I feel like I'm never going to get a break. I have had 9 blood tests in the last 4 weeks and honestly... I'm tired. I won't give up though and you can bet your bottom dollar that I will never let it break me.
"So strong and I don't know how but I can't be torn down"
A BUMP IN THE ROAD..
My first observation showed that I had a temperature, so they stopped the infusion for half an hour. My 4th observation showed my heart rate was above normal. A normal heart rate is between 60-90bpm and mine was 142. Throughout the day, my heart rate was going up and down but nowhere near where it should be. Kerry kept telling me to be calm, relax, think happy thoughts and all of that but honestly, I felt fine. I had my Mum by my side the whole time and I wasn't worrying about anything but I know subconsciously you can worry! So I laid back in my chair and tried to relax as much as possible. Time went on and my heart rate was still going up and then down and then back up again. So I actually ended up having an ECG which came back fine apart from it showed how fast my heart was racing. I think I left the hospital that day on a heart rate of 113.
Tuesday came around and when I had my first observation, It showed that my heart rate was already at 137, so my new nurse Veronica (again, absolute babe with the kindest heart) refused to do the infusion. She rang my MS nurse who also thought it wasn't a good idea to continue, with my heart rate being so high before the steroids OR Lemtrada. At this point, we were waiting for my Neurologist to give an answer as to whether he thought we should continue. After all, he knows best. After 30 minutes or so, we got the call to say that he thinks it's fine to continue and that's what we did.
My final day of treatment was Wednesday. One final push and then it was time for recovery. I was exhausted this day and really ready for it to be over. It's really hard to describe how Lemtrada makes you feel but besides the burning itch from the hives it gives you, it makes you feel drained, tired, exhausted and sluggish. Have you ever been in a position where you've had to put poison in your body, to make your life a bit more bearable? But because of the hideous side effects, (including a brain infection which can lead to death) you've had to sign a contract to basically say "Hey, even if I die, my family can't sue you"?
When I came home, that's when I had to change my routine slightly. I follow a strict diet to make sure I don't catch listeria whilst in recovery. I can't be around small kids, babies or anyone who's sick. I also have to take anti-viral medication for 28 days. This is because Lemtrada destroys your T cells, B cells which are your lymphocytes and your white blood cells. Basically... my immune system is at 0.
Four days after coming out of hospital, I started to develop chest pains. A pain right in the middle of my chest which felt like a sharp burn, a bit like indigestion or heart burn. I took Rennie tablets, I drank Gaviscon out of the bottle and even drank cows milk (I don't usually drink it) to try and help any acid that I may of had in my tummy, causing the indigestion. None of these helped and the pain started to spread down my arms, around my back and also up my neck. I knew at this point that this wasn't indigestion. I was in so much pain that I was googling ways to help chest pain and it came up with "How to tell the difference between heart burn and a heart attack".
I knew that was a bit far fetched because c'mon.. I'm 23! I couldn't possibly be having a heart attack. But then I clicked the article anyways and my heart sank a little when it said that heart burn doesn't spread to any other places in your body but a heart attack pain can spread to your arms, your back and your neck. I was in and out of two minds, thinking of course I haven't had a heart attack but also thinking.. "Shit, maybe I have". I ended up emailing my nurse because the pain was getting too much and obviously, I had just had Lemtrada, so maybe it was something to do with that. I woke up in the morning to an email, a text message, a missed call and a voice message from my MS Nurse. The email said "I'm not sure whether the pain is on going but if it is, you need to call 999." I texted her and said that the pain had calmed down but I explained how bad it was, that it spread to other places and how I was feeling very faint and nauseous. She rang me straight away and said that a new warning had come out about Lemtrada, on Friday (3 days before this call) about it causing potential cardiac problems and that I needed to be seen by a doctor today. I rang my step-dad in hysterics and within 10 minutes, he had called me back and said "We're on our way". Less than an hour later, I was sat in isolation in the minor injuries unit at my local hospital, waiting to be seen. We were told that there was a 4 hour wait but I was seen within 20 minutes.
At this point, I had been taking Beta Blockers for about 7 days now and couldn't feel a difference. I was still dizzy whenever I stood up, I was still nauseous but unfortunately now, I couldn't walk up the stairs. It was like my legs were stuck in quick mud, I didn't have any pain with it though.. I just couldn't move. I began researching my symptoms and an Overactive Thyroid came up, that's when I knew I had it. With Lemtrada, 1 in 10 people get a thyroid problem. It is very common but I honestly thought I would never get it. I had 12 months of perfect blood results (I get checked every month) but between my last check up which was early March and when I started Lemtrada (early April), something had gone wrong. My legs had been shaking like a leaf since March 31st and I have been sweating uncontrollably since that day too. I also went to the Zoo in 8 degree weather and was dripping! I remember thinking "What the fuck is going on"?
Now I know why.
Now I know why my legs were shaking so much in hospital. Now I know why I'm sweating and losing a lot of weight. Now I know why I have tremors in my hands, legs and feet. Now I know why I'm dizzy standing up. Now I know why I've got a lump in my neck. Now I know why my heart rate reached 200bpm.
On the 29th of April 2019, I was diagnosed with Graves Disease, which has caused my Overactive Thyroid - all because of Lemtrada.
I messaged my nurse on the week of the 22nd.. and told her that I know I've got an Overactive Thyroid and she got me an appointment with my neurologist the week after. However, I had to go and have my bloods done beforehand and I was told they were testing me for Graves. My blood tests came back and showed that I did in fact have Graves Disease. They also showed a possible blood clot again, just like a few weeks ago. My neurologist asked me to stick my arms out, which I did and all you could see were my hands shaking, bouncing up and down and completely out of my control. I was told I would be referred to an Endocrinologist but I am still waiting for that. I went for another blood test last Friday, to confirm whether I had a blood clot or not but I haven't had my results yet.
My current situation is exactly the same apart from my muscle weakness in my legs are a lot worse. I now have to bum shuffle (lol) up the stairs and I walk a little bit funny. So now I have two auto-immune disease, both incurable and both attack my immune system. My MS attacks my brain and spinal chord and my Grave's attacks my thyroid. Life is really tough at the moment and I feel like I'm never going to get a break. I have had 9 blood tests in the last 4 weeks and honestly... I'm tired. I won't give up though and you can bet your bottom dollar that I will never let it break me.
"So strong and I don't know how but I can't be torn down"
lol, love that for me.
Women in China, Japan and Southeast Asia have been using this trick for centuries to grow out their hair as long as Rapunzel's. They literally had floor length hair and rumour has it, it's because of rice water.
I don't know about you guys but.. I need me some of that.
RICE WATER FOR HAIR GROWTH (HOW TO MAKE)
lol, love that for me.
Women in China, Japan and Southeast Asia have been using this trick for centuries to grow out their hair as long as Rapunzel's. They literally had floor length hair and rumour has it, it's because of rice water.
I don't know about you guys but.. I need me some of that.
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