Tag: ms

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).

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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.

When the mind says “yes” but the body says “no”…

It’s been ages since I’ve written and I guess I just haven’t been feeling all that inspired to write. Having said that, I’ve got lots of ideas following my recent, amazing trip to Bucharest for the MS Sessions (more on that in a blog in the VERY near future).

But today, I want to talk about the mind/body link. Because today, mine are totally not on the same page, and haven’t been for the last month or so.

Some of you reading this will know that Dave and I completed on our first home just over three weeks ago. And it’s amazing. I truly, could not be happier.* But my word, isn’t moving exhausting? There’s been a never ending stream of flat pack, boxes, admin, decorating and just “stuff to do”. Throw a trip to Bucharest in the middle of it all and you end up with one exhausted MSer.

Home 🙂

I try to slow down, but my brain is constantly thinking of the (what seems like) 1,001 things that I need to do. Add to that, I’ve been crazy busy at work this week and I’m just feeling a little overwhelmed. I’m not living in the present – I’m constantly looking at the next task.

Let’s back track a second.

The day after I got back from Bucharest, Dave and I headed out to do a food shop. And for the first time I felt like my disability wasn’t invisible anymore. I was walking along with stiff legs. My knees just wouldn’t bend. My balance was way off. I’d gotten out of bed that morning and had fallen straight back in.

My first thought was “shit, am I having a relapse?” A couple of weeks on and I’m almost certain that I’m not. I’m just bloody exhausted. BUT I WON’T SLOW DOWN!

I’ve got fellow MSers left, right and centre telling me to “slow the hell down” but I’m not doing it.

And now I find myself lying flat on the bed with every bone and muscle in the lower half of my body aching. All comprehension and reasoning in my brain is gone. Ask my a question and I have no idea what the answer is.

It’s my own fault. I insisted on going out and doing a food shop today. I know, I know, but Lidl don’t deliver and they’re WAY more cheaper. By the time I got home I was physically exhausted. My legs hurt, my hips hurt and my feet hurt. I wanted to cry in pain. I did for about five minutes but got in bed with Pops (my dog) and we had a nap.

The second I woke up (feeling much better), I jumped up and I’m doing all sorts of crap that really does not need to be done yet. And now I’m back in bed in pain again. I know. I’m an idiot.

The thing is, sometimes I don’t feel mentally exhausted. I have so much clarity and I feel like I can take on the world. And I’ll just keep on pushing through the pain to get the job done. I need someone to tell me to stop. Which Dave did eventually do today. After I got up and I started trying to unpack the last boxes, he walks in like “what on earth are you doing?!” and promptly tells me to go and put my feet up.

Thing is, when I don’t feel tired, it’s tough to stop me. I physically find it hard to just sit and do nothing. I get restless. I’ll keep on going until the pain cripples me and someone tells me to stop being a hero and sit down.

A friend and fellow MSer, Ilise just sent me this and it is so appropriate.

Really, what I need to do is learn to accept that almost everything really can wait until tomorrow. I don’t have to constantly live “getting shit done” and at 100mph. And let’s face it, the only person beating me up when it’s not getting done, is me.

*That’s a lie. I’d be happier if the used tea bags actually made their way to the bin and if he bought 3ply loo roll and not 2, but I can just about live with it 😂

In a funk.

I’m really scared. Scared for the future. I’m going against all my rules feeling like this. I tend to prefer to not dwell on what might happen with the progression of my MS. Because that’s just it. It only ‘might’ happen. There’s just as much a chance that everything will be ok. Which is why I see little point in wasting time worrying about it. That isn’t effective 100% of the time though. Like now for instance.

I’m not really sure what’s triggered it. I returned to work last Monday after six weeks off following my second round of Lemtrada and it was ok. As I’m on a phased return, I worked four hour days last week, today I managed five hours and tomorrow I’m going to try for six. And for the most part, since about two weeks ago I’ve been feeling considerably better than I usually do.

This weather is not helping at all though. Yesterday, I felt terrible. And all I could think about was the fact that I really needed to clean my bath. But I just didn’t have the energy. I could barely stand up for 20 seconds without feeling like I needed to sit down again. And still….”the bath needs cleaning Jo,” said that little voice in my head. All I could think about was that just for once, I’d like my whole bathroom to be clean at the same time. Not just the toilet, or not just the sink, or not just the bath.

But I left it. I just couldn’t do it.

Today. I’ve been into work and had a good day. And although I’ve had a bit of an upset tummy since I got home (this happened last year – damn immune system. It literally reacts to the slightest thing) I’ve been full of energy. To the point that I’ve done a load of washing, changed my sheets, vacuumed and guess what? Cleaned the bathroom! THE WHOLE BATHROOM! I’m sat in my bed now in an attempt to recover from that mass expenditure of energy, but I felt good whilst I was doing it, so I don’t really regret it!

Dave and I are in the process of buying our first home at the moment and it’s really stressful waiting for a completion date. But we’re having ALL the grown-up conversations in the meantime. The current debate is over having, or not having a cleaner. Because I can’t even begin to explain how knackering cleaning that damn bathroom is. And I can’t just wait for a random day where I have energy like I do today. It could be months before this happens again! And actually, even if I do have the energy levels for it, I’d rather use it on going out for a nice walk or on some other quality time with Dave and Poppy.

rpt
 I mean, wouldn’t you rather hang out with these two than clean a bathroom?

It’s conversations like this that are making me fear for the future. I don’t know if it’s the very real responsibility of having a mortgage and desperately trying to find an insurer that will give me a half decent quote on life insurance (*NEWSFLASH*: getting a decent quote with MS – not easy. And don’t even bother with critical illness when you’re already considered critically ill). It could equally be that I read a story about a 46 year old woman who is living in a care home with residents that are mostly in their 80’s and living with dementia*. The system has totally failed her. It’s heartbreaking. She didn’t inflict MS on herself. She didn’t chose to have it. I know that life isn’t fair, but nobody deserves to live how she is living. And it just seems to have hit me that that might become my reality and it scares the living daylights out of me.

I know that right now I’m in a little funk that’s completely normal when you have a degenerative condition such as MS. In a matter of time, whether it’s days or weeks, I’ll snap out of it and start living in the present again. But sometimes I just need to let this emotion come out, rather than bury my head in the sand. The trick is remembering to stand back up and march on.

I’m ok. I really am. On a rational level I know that this is just something I need to go through, but I also know that there’s light on the other side and it’ll be ok.

 

*I didn’t go looking for this story. I tend to avoid it because I know that half the time the media only tells half a story anyway and is meant to sensationalise and make us all worry and fear everything. This was posted in an MS Facebook group though and I guess curiosity got the better of me.