It’s MS Awareness month. So in honour of that I’m posting to my story and/or Instagram feed every day.If you’re interested in following, you can do here.I’ve planned out different topics to address over the course of the month. Yesterday was ‘What is MS?’ Today will be ‘How do they diagnose it?’I’m telling my story. I’ve done this via my blog, but that only works for “bloggers”. Also, even though you share blogs, it still feels deeply personal. An Instagram story where people can interact and ask questions feels right.So that’s it. If you’re interested, you know where it find me!That doesn’t mean that it’s the end of this blog – I’m just doing something different for this month
“Today was a Difficult Day,” said Pooh.
There was a pause.
“Do you want to talk about it?” asked Piglet.
“No,” said Pooh after a bit. “No, I don’t think I do.”
“That’s okay,” said Piglet, and he came and sat beside his friend.
“What are you doing?” asked Pooh.
“Nothing, really,” said Piglet. “Only, I know what Difficult Days are like. I quite often don’t feel like talking about it on my Difficult Days either.
“But goodness,” continued Piglet, “Difficult Days are so much easier when you know you’ve got someone there for you. And I’ll always be here for you, Pooh.”
And as Pooh sat there, working through in his head his Difficult Day, while the solid, reliable Piglet sat next to him quietly, swinging his little legs…he thought that his best friend had never been more right.”
From time to time, my mood dips and it’s usually triggered by a flare up in MS symptoms. Go figure.
This last week I’ve been feeling so extremely tired and in quite a bit of discomfort, particularly in my legs and hips. It’s not fun, but it’s my reality.
I don’t like to allow myself to feel too sorry for myself though – after all, there are plenty of other MSers who have it worse. But the reality is, there’s millions of other people who DON’T have MS. So I’m totally allowed to feel bloody miserable from time to time. And that’s ok. The big thing is how I recover from that, which I always do.
In the past few days, I’ve been feeling extreme amounts of gratitude. Particularly towards Dave. Some people would say it goes without saying and if the shoe was on the other foot, I would do exactly what he’s done, but it blows my mind that he’s stuck by me through this. The fact that I’m rarely up for a night out and would rather sleep doesn’t seem to bother him at all. And that deep realisation of just how much someone must love you is enough to move you to tears.
Unfortunately, in the many Facebook support groups I’m a part of, I often see that it’s all too common for the diagnosis and having a disabled partner to be too much. The other partner leaves. And it’s so easy to say that if someone leaves you in the face of your disability that you’re better off without them, but the truth is, we all need our Piglet.
Piglet and Pooh’s story is about me and every single person in my life who let me have my bad days thanks to the psychological impact of MS. I have been in awe as I’ve come to the realisation over the last week or so how many amazing people have my back. Especially when I’m having a Difficult Day.
Thank you for being my Piglets.
NEDA. Sounds like nada. And ‘nada’ is the exact amount of damage MS has done since I’ve started Lemtrada.
NEDA means ‘no evidence of disease activity’ which is the best result I could get from an MRI scan. I mean I could be told that my lesions are shrinking but since there’s no cure for MS I’m pretty cynical about that – or rather, I don’t believe it actually means anything.
Anyway, it was news I needed to hear and helped me put my positive pants back on. I’ve been feeling a little disillusioned about my choice to have Lemtrada recently. I’ve not relapsed since being diagnosed, but for some reason I feel worse which just wasn’t making sense. And when I say worse, I’ve found I’m having to make new adjustments. When cooking, I’ve found I’ve needed to sit at the kitchen table to do the chopping and prep of a meal because standing up for a long time is getting hard! (Note to self – buy a perching stool). When going into town, I’m having to find a bench to sit on and take a break whilst Dave pops into a shop. Things are just feeling a bit tougher.
Talking to my nurse put it in perspective though. He rightly pointed out that I’m still only 7 months post recovery of my second round of Lemtrada. It’s winter which makes all of us feel rubbish and it’s really hard to recover from the Christmas period with MS. I moved house. I’m still adjusting and recovering from life being crazy!
So the good news is that I might not be getting better, but I’m certainly not getting any worse. Since I’ve had my treatment people always ask “has it worked?”
If by “worked” people mean that I’m not getting worse, then I can finally now confidently say that yes, it has.
If this is as bad as I’m going to feel then that’s a small price to pay to stop things getting worse. And I’m delighted with this news.
Mid 2018 I decided to limit my intake of meat products. I no longer purchased meat to cook myself but would still eat it if someone else was cooking to avoid being a pain in the back side. When eating out, I’d make my food choice by first seeing if I wanted any of the veggie options. If that was a no, I’d move to the pescatarian (fish) options. If I still didn’t want it, I’d look at the meat options as an absolute late resort.
At this stage in my life I had spent most of my 20s yo-yo and fad dieting but had vowed to give up abusing my body in this way when I was diagnosed with MS. So, I totally forgave a close friend asking me “is this not just another diet in disguise?”
No. It wasn’t. Because this time I wasn’t doing it to lose weight. I wasn’t doing it for my health on a superficial level. Shit had got real.
By mid-January 2019 I hadn’t eaten any meat products since the start of the year and was finding it relatively easy. Then I completed my Reiki 2 attunement around that time and suddenly it wasn’t just a case of not eating meat for my health – ethics became important to me too. Once you’ve given up meat and don’t find it too difficult, it becomes much easier to face up to the ethics around the meat industry. We very much bury our head in the sand because the reality of how animals are treated can be too horrific to face up to.
But I digress. And perhaps I need to back-track a little. How did I know that giving up meat products was good for my “MS health?”
Upon diagnosis one of the first questions I asked was whether there was something I could do food-wise to help myself. Slow it down. Reduce day-to-day symptoms. That’s when I stumbled upon Professor George Jelinek’s book, Overcoming MS (OMS).
OMS isn’t just a diet. It’s a seven–step recovery programme with proven results. These steps are outlined throughout the book. Which I never made it through. Yep. I said it. Didn’t even get past page 47. In all honesty though, at the time I don’t think I was ready to make as dramatic a change in my life as my diet given the news of the enormous change that is MS.
Following the launch of my recent podcast episode, I had some lovely feedback from @healthy_living_gem on Instagram. We had a bit of a conversation about “MS stuff” and we ended up discussing diet. She explained to me how she more or less follows the OMS diet now and how it’s helped her. She also told me she follows it roughly 80% of the time. This makes me feel a whole lot better about halloumi. Not going to lie – the thought of quitting halloumi is a heavy part of my reluctance to go plant based! Also, I’m so “all or nothing” about stuff that it scares me that I’ll set myself up for failure.
But now I’m ready to face it. Essentially, from the point of view of the diet, I’m becoming a fish-eating vegan. I want to make this a slow-(ish) transition. I plan to start by switching my milk from dairy to almond right away. I’ll start trying to have just one plant and fish–based day a week until I find my feet with new recipes and finding something I can work with that doesn’t compromise on rest time. Because food prep is exhausting! I’d be thrilled if in six months’ time, I’m following Gem in a healthy 80/20 balance and eating fish and plant based at least six days of the week.
So today, I’ll start reading my OMS book again. And in coming blogs, I’ll talk about the different stages of the plan and how I’m getting on with it.
Do you follow OMS? How do you find it?
***If you have a diagnosis of MS a really kind person made a donation to allow people to get the book for free! It does depend on the country you’re in but for the UK, Ireland, NZ and Australia can get a hard copy of the book and for those in the US you can get an ebook version by clicking here.***
Back in October, when I went to the MS Sessions, I met the lovely Jessie Ace. She’s the person behind the DISabled to ENabled podcast and she’s as ace as her name suggests!
Anyway, she invited me to speak on her podcast and today my episode went live!
If you’re interested, it would mean so much to me for you to take the time out for a listen.
Check it out on the below link!
The DISabled to ENabled podcast | 38. Joanna Livermore: MS taught me a vital life lesson.
Two years ago today, I was diagnosed with relapsing remitting MS. At the time, this blog was my saviour. Being able to talk about how I was feeling and what I was going through was extremely cathartic and I couldn’t have needed it more. But I feel like I’ve lost my way with it recently. I’m finding myself writing only when I’ve been feeling frustrated and needed an outlet and that’s not what I want this to be about.
So I’ve been working on what I want this blog to be and how I can take it forward over the next few months and beyond. I’ve got some ideas, but I also want to know from you what you want as a reader.
I’m still yet to write about my experiences at the MS Sessions in Bucharest which was back in October which is ages ago now! But there’s so many important things I want to say about it and there’s so much that I’ve done following it regarding how I want to use my diagnosis in a positive way. Something that I was considering probably a year ago was interviewing other people with MS for their story and writing it here, but I’ve learned some skills at work with editing audio and I’m toying with the idea of podcasts amongst other things. I do however also want to bear in mind not starting something that I can’t keep up with or ending up burning myself out. I can’t do everything!!!
Anyway – focusing on two years with MS, I still stand by what I said this time last year. It’s one of the best things that’s ever happened to me. Sure, I don’t say that on my bad days, but from a big picture perspective, I wouldn’t be who I now am without it. And for the last year, I’ve been the happiest and most content I’ve ever been.
It feels important to talk about how I feel about Lemtrada, 18 months on from my first round. I feel like the first round wiped me out and I’ve not been the same since. Let me explain. Even after I was diagnosed with MS, I felt no different to how I did before. I was exactly the same. I didn’t ache unless I’d been in the gym, I was still tired all the time (but just in the sense that I needed early nights and then I’d be ok). I had the occasional brain foggy day which I could usually put down to a bad night’s sleep. It wasn’t like I was diagnosed and then all of a sudden I had all this stuff wrong with me all the time.
Before I go on, it’s important for me to point out that I don’t regret my choice to have Lemtrada. It was the best option based on the options presented to me and the key thing is, as far as I am aware, I haven’t had a relapse.
But what I do feel is this. I’ve never truly recovered from it. Now I get it. Maybe I’m six months off of recovering from it and feeling better. It wasn’t like I was diagnosed with MS and all of a sudden I felt rubbish all the time. That would be purely psychological because until that point I was more or less ok. No. I feel like since the first round of Lemtrada I’m constantly battling symptoms. I’ll either be tired, aching/in pain or my cognition will be a mess. Thankfully, never all three at once. Some people call them pseudo relapses, other people call them a flare up. Whatever they are, I feel like I’m in a constant state of it.
Fortunately, nothing is debilitating and that’s why I see myself as lucky. The aching is never horrendous pain that I can’t live with. It affects me psychologically more than anything on some days when it’s a little worse than usual and I feel like it’s never going to let up and that this is forever.
But when I can shift my perspective it changes. I’ve not (knowingly) had a relapse in all the time I’ve been officially diagnosed with MS. And actually never feeling more than 75% is a small price to pay if it’s (so far), halted my progression. So to anyone who is considering Lemtrada, there’s no way I would tell you not to have it.
God. That felt depressing and like a whinge. Exactly what I’m trying to avoid! I feel like a quick bit of honesty about Lemtrada was needed though. I’ve not talked about it for ages and I’m finding myself increasingly thinking about the fact that I’ve not had a relapse but I currently feel ten times worse than I did two years ago. And there might be someone out there wondering the exact same thing on a personal level!
Moving on, let’s talk positive. In Bucharest, I met the lovely Jessie Ace. She runs the Disabled to Enabled Warrior podcast and she asked me to be on it. We recorded the interview back in December and my episode comes out next week! I will of course be sharing the life out of it and it would mean a lot for you to have a listen yourself. I talk diagnosis journey, how I’m involved with my local MS Centre and the benefits of Reiki with MS.
I’ve also been keeping busy with Wigan MS Therapy Centre and have started to open the centre up a couple of times a month so that young people and full time workers can access the facilities and support group that comes with going to those type of centres. It’s very early days at the moment and I have a really clear vision for it. Obviously, after just one meeting it doesn’t yet meet that vision at all. Rome wasn’t built in a day and it will grow into exactly what it needs to be in time though.
Following my starting this, I’m really happy to have been put forward to join the committee for the centre and am now the Young MS coordinator. More on that as the role evolves 🙂
Blood tests are still being done monthly and all the results are coming back ok. No sign of thyroid issues or any of the other associated risks with Lemtrada. I think I’m on number 19 of what will be roughly 60 tests now. They’re flying by! I’m coming up to my annual check up with my consultant too. That’s on Friday 6th March and I’ll be getting results of the MRI I had back in September at that point and will hopefully get good news about how Lemtrada is working for me.
And that’s all for now. I needed to do a catch-up to get me back to blogging consistently and I’m hoping to talk more about things I’ve mentioned above, along with some other stuff throughout this year.
But for now, I’m gonna go and celebrate my two year anniversary with a brew and a nap!
We’ve all been there. Whilst thinking we’re on death’s door from all the sambucca shots last night we’ve sworn we will NEVER drink again. But within a few days it’s forgotten and we’re making next weekends plans.
Granted as we settle down, those night’s out are probably less frequent, but the bottom line is that the majority of us are still willing to have a hangover to end all hangovers in exchange for an awesome night out.
And why wouldn’t we? I think they call that living!
So how is this relevant to MS?
Well, I have to make decisions similar to this everyday. Earlier today, I was explaining to a friend how you often feel that when you make a decision to walk the dog, go to the gym, dance around your kitchen or indeed go out partying or drinking, people are judging whether you really are struggling or not. Because surely if you can do that, you’re fine, aren’t you? Right?
It’s a big decision, whether you do those things or not. Going to the gym is something you might do, not because it doesn’t cause you pain and is easy, but because you know that if you don’t, your disability will get a hell of a lot worse.
You might decide to walk the dog because the dog needs to be walked. It’s unfair not to.
You might dance around your kitchen because you used to love dancing and your condition has robbed you of being able to do it for more than five minutes anywhere else. And you might still go out because you want to retain as much normality as possible, you’re still human and enjoy socialising and if you don’t, chronic illness can be really bloody lonely.
You make those judgements for your own sanity and because you’re not going to let your condition rob you of living. You decide to do it because even though you know you might pay for it for days afterwards, what it will do for your soul, far outweighs the pain and fatigue that will come after it. It’s a conscious choice to have fun knowing full well what the consequences are.
Not unlike a hangover 😉