Tag: multiple sclerosis

A (not so) new symptom

Yesterday evening, I was enjoying a nice relaxing bath when all of a sudden I found myself gasping for breath. I couldn’t get air in. I was terrified. Was I about to die?

When I eventually calmed down and righted my breath, I could work out what happened. I’d choked on my own saliva. Yes. You read that right.

And, it’s not the first time it’s happened. So it got me thinking. Embarrassingly, I regularly wake up with drool all round my mouth (honestly, this is actually more shameful than the time I admitted to shitting myself on multiple occasions). I constantly feel like I’ve got excess saliva in my mouth and my throat often feels like it’s quite closed up. Like someone is gently pressing on my airway. Is it all linked? (SPOILER ALERT – of course it bloody is!)

So I dufilly trotted off to an MS Facebook group. These guys and gals will know if it’s MS or just a completely different slathering problem.

As expected, many come back confirming that, yes, it is just another MS symptom. Honestly. It’s the gift that keeps on giving!

I call this a not-so-new-symptom because whilst it’s something that’s lurked for a while, this connection to MS is completely new. And to be honest, if I hadn’t had a near death experience (no I’m not being melodramatic, Mother) then it would never have occurred to me to even ask the question.

Anyway. I don’t really know what to do with this brand new piece of information (the GIF is for you Kat and Iain) other than just acknowledge it as another gift of MS and move on.

Out of genuine curiosity though I have two questions.

1) what in hell can I do about this one?
2) MSers, what do you do when you make a connection to an old symptom. Do you bother telling your nurse? It all feels a bit pointless because I’ve got it but do they need to keep an accurate account of all your symptoms?

HELP!!

Thank you for being my Piglet.

“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.”
A.A. Milne

🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡

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. The best a girl can get.

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.

OMS (Overcoming MS) Diet

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).

img_20180701_1646376567899939660193456.jpg

OMS isn’t just a diet. It’s a sevenstep 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 fishbased 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.***

Hungover?

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.

Back in my late teens/early 20s when I’d be out at least four nights of the week. I had so much energy and suffered from horrendous FOMO so I was ALWAYS out!

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?

I need to get back to the gym. It’s a “hangover” I’m willing to have because the long term benefit outweighs any short term pain.

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?

Wrong.

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 😉

“Yeah I’m fine.”

My lovely Mum and Dad have been up this weekend to see Dave and I in our new home. It’s been a gorgeous weekend and I was devastated to see them go on Monday. I’ve been doing this for ten years nearly and it never gets easier.

The first thing to do on their visit, was to introduce my boxer, Poppy, to mum and dad’s Schnoodle, Reg. We did this by introducing them on the neutral territory of the water park a couple of minutes walk down the road from me. There’s a couple of big reservoirs you can walk round. It’s really lovely and lots of people walk their pooch there.

My main girl, Poppy

Anyway, I digress. We took them on a pretty big walk around them (which I rarely do – it tends to be Dave’s job). Mum and Dad both commented how surprised they were at how far I managed to walk. Roughly a mile. I think they were just as surprised when I told them that pretty much every bone and muscle in the lower half of my body was in pain. But there’s nothing you can do. You’ve just got to get on with it.

That’s the thing about invisible illness. The only thing that isn’t invisible sometimes is the brave face you put on. I only ever admit how I’m feeling when someone close to me asks me like they actually want to know. Anyone else will simply get the stock “yeah I’m fine” response.

It’s a difficult balance to strike. You don’t want to go through life being miserable about the pain you’re going through and constantly going on about it. You don’t want to inflict your troubles on everyone else. They’re your problems, not everyone else’s, after all. But you also want people to see and understand that sometimes you need a really simple adjustment to make your life easier. Sometimes that adjustment is as simple as an acknowledgement that you’re finding life a bit hard.

Because it’s a tricky one to get right, many MSers end up on the side of permanently pretending that everything is “just fine” but having this internal struggle and frustration that “nobody gets that things are a bit harder for me”. Then they still won’t speak up and we’re all just too damn proud to ask for help. Or we genuinely believe we don’t need it.

As I’ve already said, as a general rule, Dave does the Poppy walking because I find it so hard. But as he was at work, I really didn’t have much choice on Friday. And let’s just say I’m still paying for it now.

This isn’t a tale of “woe is me”. This is a tale of a girl that was so bloody desperate for the temperature to cool down because she was sweating constantly, she’d forgotten how much pain the cold caused her. It’s a tale of a girl who needs to learn to be a bit more honest when she’s feeling a bit shit.

It’s not unbearable pain – I can keep going through it on the odd occasion there’s no alternative. But it really is enough to get me down. And I’m starting to feel a bit fed up of it all.

But for now, I’m practicing gratitude where I can. It does tend to distract from the pain slightly, as does writing this blog. I’m throwing myself into reading excessively. I’m napping when I need to and generally trying to slow down a little because it’s been a whirlwind six weeks.