My MS Story (Part 2)

Just three months after I was sick and dizzy with double vision and constant vertigo, it happened again.

It came on this time much more aggressive than the first time. However, having made so much progress when I went back to work last time, I took a week off work again, but didn’t bother going to the doctor or getting a sick note.

Despite feeling dreadful, I dragged myself back into work. As far as I was concerned, I’d had a viral infection a few months earlier, and perhaps I hadn’t shaken it off properly so it reared it’s head again.

Once again, I was back wearing my glasses, and fortunately I hadn’t thrown out the prism that had corrected my vision the first time around.

This time, my “episode” lasted around 5 weeks – so a touch shorter than the first time.

The rugby league season started again during this episode – and I wasn’t to be put off going to see my boys in Cherry and White.

I should have stayed at home. It was horrendous. Getting into the stand was particularly bad as there was no hand rail. Along with everything else that had gone wrong with me, my balance was pretty questionable. I spent the whole match feeling sick, and struggled to even see what was happening really.

Don’t be fooled by the smile – I felt HORRENDOUS!

Like last time once I’d recovered, I didn’t think of it any more and that was the end of it.

That was the last of any serious relapses that I remember for a couple of years at that point. I was still experiencing the tingling in my legs that had started a few years earlier. I’d grown so used to it though, that I didn’t even notice it anymore.  It would come in waves of severity. Even to this day, I still experience it, but it’s never pain. It’s not even discomfort. I can’t even say it’s annoying. I described it to my Neurologist as like someone had put a Berocca in my leg (pretty sure it’s the first time she’s heard that) and I made a friend laugh the other day when I said it just feels effervescent. He’s confident that no-one has ever described a symptom of MS in such a positive way, and if I’m honest, I’m inclined to believe him!

The Snail Mail Project

I’ve talked at length recently about my love for letters.

I’m obsessed with them.

I need more Pen Pals in my life!

So, this evening I’ve set up “The Snail Mail Project”, a group on facebook, which aims to connect letter lovers from all round the world.

There’s only three of us there so far though.

If you want to get involved, you can do so at The Snail Mail Project

I’d love to see you inside!


My MS Story (Part 1)

I’m still struggling to get my head around my recent diagnosis. I find myself getting on with my life, as if nothing has changed and then I’ll have a little niggle, or the tingling in my leg is more prominent than usual. It’ll hit me. And I won’t cry or get upset but I’ll feel really strange for a while.

I’m getting counselling through our company Employee Assistance Programme. If you’ve got this facility where you work, if you ever need someone to talk to, use it. I cannot put into words how valuable it is!

I’ve opted for e-counselling because for the most part, I feel fine. Which scares me. I have it in my head that I should be “not ok” at the moment. Because I feel fine, I wonder if I just don’t get it. Really I want to just dig into how I’m feeling a little bit to see if I’m in shock, in denial, or genuinely as ok as I feel! If I’m not ok, I’d rather drag those feelings up now and deal with them.

I believe that MS started for me in about 2011. I went to the doctors with tingling feet. They felt like they were freezing constantly. Apart from the tingling, I had no sensation in my feet and I struggled keeping my ballet pump style shoes on my feet. I went to the doctors about this and was told “no it’s not poor circulation” and “no we don’t know what it is so off you go for an MRI”. I never heard the results of that MRI, and because the tingling had more or less gone, I didn’t really think anything of it.

My next memory of anything particularly significant was in October 2013. I woke up one morning with double vision and the room spinning, and no, I hadn’t been drinking the night before. The only way to describe the sensation though, was the feeling you get when you lie down on the bed after a good night out and it’s spinning!

I went to the doctors the next day. My doctor sprung into action, saying he thought I might have had a mini stroke. I got sent to hospital for more tests. I had a CT scan as well as all the blood tests under the sun. I remember walking along the road like I was drunk. It was awful. I must have looked like the local alcoholic.

I usually wear contact lenses, but to help with the double vision I had to wear my glasses and place a prism over my left lens. It looked TERRIBLE and I was so worried I’d end up always having to wear my glasses (something I’d never been keen on).

Before they fit my prism, the only thing that helped the double vision was this patch

After some googling, it was apparent to me that my symptoms were very much like “Labyrinthitis”. I never really got a diagnosis, but I did get my ears syringed and a five week sick note.

(I must just add, having your ears syringed is a lovely sensation and not the slightest bit uncomfortable like it sounds!)

I look so horrendous in this picture because I’d spent about 2 weeks with my head over the toilet. The vertigo made me feel violently sick.

After five weeks off, I went back into work. Everything I’d read about Labyrinthitis suggested that the best thing to do is get on with your life and retrain your brain because it can hang around for months, years even.

At about the six week mark, and just one week into my return to work, I was virtually symptom free. I never got a formal diagnosis and I didn’t need to return for another sick note so that was the end of any medical attention.

No! You’ll mess up my macros!

I uttered these words from my lips about a year ago, to a colleague who asked if they could have one of my rice cakes.

A rice cake.

It’s only now I can see how ridiculous I sounded.

I’ve spent the best part of 10 years on a diet. Never the same one for too long, but I’ve tried Slimming World, Calorie Counting and Macro Tracking. I tried 5:2 for a bit (but VERY quickly lost the plot with it). I’ve tried intermittent fasting and let’s not forget my time on The Body Coach where I got so swept up in Joe Wick’s curly hair I didn’t have a clue who I was anymore.

I’d successfully lost somewhere in the region of 5 stone. The trouble was, it was the same stone going on and off constantly.

The day I got told that I “might” have MS, a switch went inside me. I couldn’t go on like this anymore. Two weeks from my 31st birthday I decided that enough was enough and diets couldn’t rule my life anymore. I was done with constantly using food to reward and punish myself.

On 25th September, my 31st birthday, Mel Wells started her Self Love week. I hadn’t heard of Mel before. (Or maybe I had – she played Loretta McQueen in Hollyoaks), but I fell in love with her, and her wonderful tribe quickly. Everything she stood for and advocated throughout that week was everything that I needed at this moment in my life.

By the end of the week, I’d resolved to join her academy. In doing so, I’ve now successfully ditched the diet mindset that I’ve spent my last ten years obsessed with (and constantly being made to feel like a failure from). The trouble is, up until roughly a week ago, I was very much living from a place of abundance. Like, eat all the food Jo, because you can!!!!!!

It’s liberating to not feel bad for eating so-called “banned” or “bad” foods, and I’ve got carried away with that. I’ve probably put somewhere between half a stone and a stone on. And now I’m ready. I’m ready to start eating intuitively, and not be bound to a diet. I’m ready to start eating whatever food makes me feel good (by which I mean, not eating all the chocolate because whilst it feels good to not punish myself, it doesn’t stop me feeling shitty and sick! But also still eating the chocolate because I love a good Bounty!)

I’ve gone from obsessing about food to going to a place where I truly enjoy my food. I made this realisation yesterday whilst I was sat eating a salad at a little coffee shop Dave and I had gone to for lunch. I’d opted for tuna salad, and I found myself thinking about how the tuna tasted. Not like how I was used to. In fact I even thought it was salmon for a short time, until I realised the tuna was probably just out of a tin in oil rather than one in brine or spring water as I was used to. It was bloody delicious!

I’m only at the start of this journey, but I’ve realised that baby steps are ok, as long as I’m going in the right direction.

No – I won’t be getting results as quickly as people doing all my previously mentioned diets, but my results are no longer about the number on the scale. They’re about happiness and treating myself right.

I’m enjoying this journey and I’m looking forward to seeing how far I’ve come in another 6 months.

And I won’t get funny about people eating my rice cakes ever again. In fact, eat them all. They taste like cardboard anyway.