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WhatMS Ep14 - MS&Cannabis Katt and Brandon discuss using cannabis and CBD medicinally for managing multiple sclerosis symptoms.*During the episode I mention a research paper showing c...

We finally recorded a new, (a bit all over the place, but all round fairly interesting 😉), episode of the podcast 😂🥰

Buster and myself talk about ‘hospital days’ with a chronic illness.

Youtube link -

https://youtu.be/lQ0adXOgQHE

And is also available on all other podcast platforms - just search WhatMS 😊

▪️Ocrevus Treatment Pt.1▪️

Tomorrow on the WhatMS podcast Chronically Courageous and I will be discussing DMDs, (disease modifying drugs).
- The importance and role of DMDs.
- Early intervention leading to better outcomes with MS.
- Our own experiences with the DMDs we have taken.

I had my first full dose of Ocrevus (ocrelizumab) 5 days ago, (I had my two half doses back end of last year), and I was luckily in the first group for treatment at my hospital post covid stuff, (my treatment was delayed), which I’m ridiculously grateful for.

In our immune systems are over active, they are that over active they ending up attacking, damaging and destroying, parts of our central nervous system, (our brain and spinal cord), which is what causes the vastly wide range of symptoms pwMS experience. Ocrevus works by targeting specific protein markers on the surface of our B cells, (a type of white blood cell - their role within the immune system is thought to contribute to the attacks on our CNS). These B cell markers are destroyed, leaving us immunocompromised (more susceptible to getting ‘normal people sick’), but with a 70% reduced relapse rate compared to placebo. It is administered in hospital through an IV, which puts the medication straight into the vein over the course of the day.

I got dropped at the hospital at around 8.25am. Due to the current situation people are not allowed to enter the hospital with you, but you’re not allowed anyone with you in the treatment room anyway, so that was fine ☺️.

You must wear a mask, but the nurses allowed us to remove our masks to eat and drink, and also during any infusion reactions (which I will go on to discuss).
I always make sure I wear relatively comfy clothes to the hospital, but also do my make up/hair etc, sounds weird because I never usually bother most days, but I guess it’s like my warrior war paint or something like that 😂🤷🏻‍♀️.

SNACKS are important. Probably the most important part of infusion day 😉 Chocolate milk to be specific. I am joking, but also do make sure you have some nice yummy food for energy, but also because your favourite snacks can be pretty comforting when you’re hooked up to an IV having parts of your immune system destroyed!

HYDRATION is important too. I think I drunk about 3 litres throughout the day. I do everyday anyway, but if you’re dehydrated, it’s harder for the nurses to cannulate and it can also amplify any infusion related headaches.

Ask to have your cannula in your preferred arm, I stupidly said my right arm, cue me putting my bag on the cable and nearly ripping it out when I stood up 🤢. Yeah, don’t do that 😅. 10/10 would not recommend.

I was given paracetamol, and antihistamine through my IV (I’m allergic to tablets), and I got drowsy very quickly (apparently it hits harder straight in the vein 😅😂). You’ll be given a flush through your cannula, and a small dose of steroids, and then the fun can begin.

From pretty early in the day I was fairly ‘ms-sy’, my vision was pretty bad, so were my tremors, but I think it was probably just because I was feeling stressed.

They start the infusion off at a fairly slow rate, and then depending on how your body reacts, the nurse will adjust it hourly and that speeds up the whole process. The nurse will also take your obs, (blood pressure, temperature, etc), periodically throughout the day.

With my first infusion I did have a pretty strong reaction, my face was really itchy and temporarily swelled up, my nose started pouring, throat felt sore and I kept sneezing.
This time around I had a few hot flushes, some heart palpitations, but that was pretty much it during the actual infusion. I took my mask off when I was getting overheated, and a bit of fresh air did help.

When you’re done, they will flush through your cannula again, remove it, and then you’re free to go 🎉

I think my infusion started at around 9.30am and I was totally finished at around 3pm. Make sure you get someone to drive you home, because, for sitting in a chair all day, infusion days are exhausting. I think it’s important to note here that not only is the infusion taxing on our physical bodies, actually just even having to go to the hospital, whatever the reason, can be very emotionally draining and/or triggering, for all sorts of reasons.
Basically you’re totally allowed to, (and probably will), feel like complete rubbish, don’t ever feel bad about that.

In the car on the way home I was EXTREMELY ms-sy. I felt like I was slurring my words, my vision was blurry, and I kept forgetting what me and the friend that picked me up (❤️), were talking about mid sentence. I also forgot the word for hospital and called it ‘the hotel’ 🙃🤦🏻‍♀️. By the time I’d got home all of my ‘right side’ symptoms were flaring up. The following day was worse, a lot of my existing symptoms all at once, nerve pain in various places all over, my right hand, foot, leg, knee were doing their usual dead thang, my vision was bad, soles of my feet were tender, and I had pretty bad nausea, amongst a bunch of other things. I had headaches, and also hot flushes and heart palpitations on and off. I felt like I’d been hit by a truck a bit, (a lot).

This continued for a few days, it had eased off a little yesterday, (bar the nausea which seemed to ramp up throughout the day into the evening 🤢), and today my symptoms seem to be MUCH quieter, I’m just feeling pretty exhausted, like I know my body is asking me for some serious rest.

I’m pretty sure over the next few weeks I will start to feel more human again, I just recommend being VERY careful being out in public/around other people immediately after, and the few weeks post infusion, as last time I caught a minor cold, and it wiped me out for an extra 3-4 weeks as it caused my symptoms to flare up that much.

I have actually relapsed between my treatments, (three weeks into lockdown and it took me out for about 12 weeks in total). This doesn’t mean the treatment isn’t working, and from what I can remember from a neurologist I saw in London last year, ocrevus doesn’t reach peak efficacy until the 18 month mark. So we shall wait and see...

Other than the actual infusion side effects, the only ongoing side effect I’ve noticed is some hair loss. I have a lot of hair anyway (🙏🏻) so it’s not in anyway noticeable, but it does tend to come out in clumps on my pillow sometimes, or in the shower.

Also I must state that any DMD is most likely NOT going to help with any MS symptoms you already have. That is not the role of a DMD. The role of a DMD is to (hopefully) reduce the number of relapses we have, which then means less disease progression, (symptoms), over time.

I will continue to keep everyone updated on my own Ocrevus journey, but if anyone has any questions don’t hesitate to DM ☺️.
If anyone has any questions, or anything you’d like us to discuss on the podcast tomorrow, again please don’t hesitate to message!

For more ‘personal’ insights to my own life, thoughts and feelings on my day to day life with MS, and also some non MS related heath and fitness content too. Please have a look at my personal page 🧡

I will continue updates with my Ocrevus journey periodically on the social media ✨

For the first post, I thought it would be best to attempt start at the beginning, (which is also definitely not the beginning really, but the beginning of the ‘thing’ I’d been struggling with for 10+ years having a name...)

Multiple Sclerosis.

I’ve been thinking a lot about what advice I would have given myself back then, in the weeks and months following my diagnosis - knowing all that I know now...
I saw a random post on Instagram a few days after I was discharged from my week hospital stint/diagnosis, and she seemed so at peace and positive with it all. I remember lying in the bed at my dads, feeling the most poorly, and the most scared I had ever been in my 29 years thus far, pleading with the universe that I too would feel similarly after my first year.

I didn’t. lol.

Which brings me to my first point...

There is no time limit on your grief. Nor is there a ‘right’ way to grieve. If you are newly diagnosed, (and even if you’ve been diagnosed for 20 years), you are allowed to be heartbroken, you are allowed to be devastated, you are allowed to be utterly terrified, and you are allowed to express that. Sitting in my hospital bed, with half of my face dropped, unable to use one side of my body, unable to speak, or think clearly, I was having a silent sob to myself. A nurse came over and told me to ‘cheer up’ and I should ‘count myself lucky because it’s not terminal’. This type of toxic positivity will be thrown at you left right and centre, by people who will never understand. People will flippantly say ‘stay positive’, because 1. It’s a lot easier for a healthy happy person to ‘just be positive’, and 2. It makes others uncomfortable. That is on THEM, not you, and always remember, you’re not responsible for how other people feel about YOUR illness.
In that moment in the hospital I felt extreme guilt - now I will not allow people to tell me how I ‘should’ feel about anything. Expressing your emotions is healthy and brave, especially expressing emotion off the back of any kind of serious trauma. Dealing with it and processing it, without pretending it’s not a thing, will see you well as time goes on.

Advocate hard for yourself. If you have been diagnosed with MS the chances are various doctors have been giving you the run around for a while. If you’re young and ‘look’ well, this will likely have been even worse for you. It is not ok to be ignored. It is not ok for you to be suffering with no answers. It is not ok for symptom upon symptom to be put down to ‘just your mental health’. It’s not ok for you to be gaslighted by medical professionals, (this STILL happens to me now despite having MRIs literally covered in various white splodges). In the years running up to diagnosis, and when I was first diagnosed I didn’t dare speak up, or disagree, with medical professionals. Now I know this is crucial. Chase things up, tell doctors what you want and need. Your lived experience is real and you deserve to been seen and heard.

Do your own in-depth research. I see a lot of mixed messages about this subject - generally other pwMS urging newly diagnosed folk to stay away from google. Whilst I completely agree that the weeks and months following my diagnosis were not the time to be scaring myself unnecessarily, (I refused to look at anything at the time whatsoever), when you feel ready, read. Watch videos. Educate yourself on our illness, what is ACTUALLY is, how it works and the real and serious implications it brings with it, (this is really tough and scary, but personally it helped me, knowing what I was truly dealing with). It also means that you are able to question things from an informed place if you ever need to. It pains me that for a lot of pwMS, they receive what I call ‘the leaflet’, with a list of reallllllly general symptoms, are sent away, and left to make sense of something that doesn’t make any sense at all. The sensation of water being poured all over my body, my face dropping, how much my ‘health’ can vary so drastically day to day, the sensation of one leg being huge in comparison to the other... These are just a minuscule amount of things that are definitely not mentioned in ‘the leaflet’.

Don’t ever take on any guilt over your own unique version of our illness. I was told by an MS nurse that, ‘most people with MS live ‘normal’ lives and work and carry on like ‘normal’. Then there’s me sitting there with so many debilitating symptoms, feeling so poorly, thinking ‘???????’. I’m now 31 years old and I’m in the process of coming to terms with the fact I will likely never live a ‘normal’ life again. There is a lot of pressure put on us to ‘carry on’, (which we bluddy do anyway fyi people), but that day I felt like I was failing, or ‘not trying hard’ enough, because what she was saying to me didn’t fit with my lived reality. How poorly you are is not your fault, despite how young you are, or how fit and heathy you may appear, don’t feel pressured to play your symptoms or your struggles down.

People will turn their back on you. I find this one funny, because I would initially read other people saying this and smugly think to myself, my friends would never do that... but I learnt fairly quickly, they can and they will. This sounds like a negative, when really it’s just damaging people removing themselves from your life, and saving you the trouble. It hurts, it makes no sense, but on the flip side you will develop deeper relationships with the people around you that really do genuinely love and support you. Some of the people around you will not have the emotional capacity to deal with you being perma-sick, and again, this is NOT your fault, (can you see a running theme here 🤔😉).

Strangers from the internet will lift you up and help you in your darkest moments. The people that love you are fantastic support of course, but there is nothing more cathartic than spilling your heart out to someone that truly ‘gets it’ on a level the people around you cannot. Network, reach out to individuals in the MS community, make friends, ask questions. There is no better person to tell you about our illness than someone who is living it. This was one of the best things I ever did and I now have life long friends because of it.

I was diagnosed mid-worst relapse I’ve ever had in my life. I’d been having them for years, but the relapses of 2019 were particularly vicious, and for a long time seemed completely unrelenting. When in a relapse we have the fear that things will never improve, but I beg that the chance they might keeps you going, because they likeliness is, they will in some form or another. That’s not me saying things will ‘go back to how they were before’, or ‘everything will just be magically made better’ - because they won’t, and it won’t. That’s not me saying physically, certain things will 100% definitely improve, because those things, sadly, might not resolve completely, if at all. Again, this is in no way your fault - but you will have periods of time when you feel better [than you’ve been feeling]. It feels like those times will never come in the moment, and the mental battles that come with our physical illness are incomprehensible, but what I’m basically trying to say is, wherever you are, things do have the ability and potential to improve, no matter how slight, even if it’s from purely a mental standpoint.

There is no cure for our illness. This seems like an obvious one, but one of the first things I did when I was first diagnosed, in true Katt Snelson style, was to buy a book. The OMS book to be exact. I was convinced I was going to be symptom free if I followed what the book was telling me, and I’d live happily ever after. A few months in I realised that, the book wasn’t actually based on any SOLID science, and the people I was aware of in the community following the diet at the time, were still relapsing. It was not a ‘cure’ and you cannot ‘recover’ from multiple sclerosis, no matter what anyone tells you. That said, lifestyle and nutrition changes do HELP, and I will go into more detail, and break down some of the more popular ‘MS diets’ in future. I’m an evidence based practitioner, which means I work with facts and evidence, however around my diagnosis I needed that hope, and it’s normal, and human nature, to seek resolution and answers for things that are scary and not ok for us. You will also get plenty of unsolicited advice from many people that DONT have our illness. I used to politely grit my teeth, and nod and smile, as if somehow me telling the person talking at me that they were wrong, would be insulting and/or hurtful to THEM 🤦🏻‍♀️. You don’t have to listen, it’s insulting and hurtful that they feel it’s acceptable to talk so brazenly on such a topic they know nothing about. And no I will not be drinking my own urine, (apparently this will cleanse and cure me 😉, genuine ‘advice’ I was given by a complete stranger), their ignorance is not on you, have the strength to call them out on it, and if you don’t feel you can, remove yourself from the situation. You don’t have to, or need to, put yourself through that.

Everyone’s MS is different. Again another obvious and very common one I hear all the time, but as you move forwards on your own journey you will really learn this for yourself. It is the broadest spectrum, with such a vast variety of symptoms, and affects people in such an individual way. Take the time to speak to others and learn about THEIR MS, but also rest assured knowing that how YOU choose to deal with YOUR version is the right way, comparison isn’t needed.

I won’t beat around the bush - you’re in for a wild ride, things will be different, difficult and scary. You will feel lost, alone, confused and sometimes want to give up altogether. Just please remember you are not alone in your feelings and struggles, ever. Even when it sometimes feels that way. The MS community is here for you. WhatMS is here for you. Despite it all, in time, you will get to know your MS very well (although it does love a curve ball 😉), you will learn what it means for YOU personally, and you will develop coping strategies that will carry you through. Confession - when I was first diagnosed I cringed at the term ‘MS warrior’ - now I really realise that we really fu***ng are. Warriors. Fighters. And we should just be so ridiculously proud of ourselves every single day.

and I, will be discussing everything ‘diagnosis’, including our own individual diagnosis stories, on our first whatMS podcast. If you have any questions, or anything you’d like us to cover, please dont hesitate to DM ☺️

What would you want to tell your past self, knowing what you know now? 🤔🧡👇🏼